IEP Update and OMG some real drama

We had our IEP meeting - we got everything we asked for.  Yay!

Drama.

2 Fridays ago, we had some business to take care of so Marc and I took off work.  It just so happened that Dylan was off school.  Great timing.  We sent him to day care for the morning and we went and took care of our junk.  We went to pick him up at daycare.  He was outside playing.  We asked if he wanted to go to a different playground and fly his kite.  That was met with an emphatic YES! 

We were walking to the car when I hear Marc behind me say "OMG What is that smell?!"  I turned and asked him what he was talking about - I couldn't smell a thing.  He was pointing a the ground with his head twisted over his shoulder.  I touched his should and asked again.  He started to stagger and I caught a glimpse of his face which was hideously contorted.  Then, he started to shake.  As she shook, he was falling.  B'H I was able to grab him and lower him to the ground (just got a scrape on his chin and on both hands).  He laid on the ground convulsing and I'm screaming.  A woman stopped her car in the road and jumped out calling 911.  I turned Marc over.  He was blue, frothing at the mouth.  I couldn't find his pulse (may have been none or may have been I was too panicd to find it) so I started chest compressions.  People came out of the center to help.  One man (who I later discovered is a doctor) asked me who I was.  When I told him I was his wife, he told me I shouldn't have to do cpr and asked if he could take over for me.  I allowed him to and after a few more compressions was able to find his pulse.

Now, dear friends, the thing that sucks the most out of this is that Dylan was right there for the entire thing.  When Marc collapsed he walked over to him (when he was face down) and tried to look into his face.  I shoo'd him away.  I didn't want him to see his father like that.  I didn't want him to see any of it but he did. 

I called Marc's mother as soon as I knew what hospital we were (unfortunately) going to.  I called my Mom.  I checked on Dylan (who was brought back into the center) and made sure he was okay - I assured him everything would be okay and I ran to the ambulance.  Once inside Marc started to awaken.  He was out for a good 20 minutes.  According to him, one minute he's walking with his family and the next he's being attacked by a group of men who are holding him down trying to get a needle in his hand.  Scary.  He fought them the whole way to the hospital.   Once at the hospital he started to calm down.  My Mom met us at the hospital and, because Marc was stable, his Mom was there, she ran me back to the center to Dylan and to my car.  Dylan was so freaked out and rightfully so.  I thought it would be good for him to see Marc before he went with my Mom so we brought him to the hospital.  Bad idea - made things worse.  He didn't want to go near Marc.  My Mom took him to her house and he spent the night.  He asked a million questions over and over and over again and my Mom patiently gave him simple answers over and over and over again. 

He's still asking the questions....

Why did Daddy fall down?
Why did Daddy's legs shake?
Why did you take away Daddy's gum?  It's not nice to throw gum in the street Mommy.
Why did yuo push on Daddy's tummy?
Why was Daddy in the big bed?

We had questions of our own.  First they told us it was a heart attack.  Then they said that seizures can raise cardiac enzymes and that it was "just" a seizure.  The idiots, I mean hospital, said it was from his meds.  His discharge consisted of a nurse removing his IV's and telling him not to take the meds any more.  That's it, no discharge papers, no signing something nothing.  Oh, and get this - the neurologist came in on Saturday - spoke to Marc for 5 minutes, stepped out to take a call, came back in for another few minutes and got another call and never came back.  Virtua Hospital blows chunks. 

Tuesday we went to a real hospital with real doctors.  They did an EEG and came back later for the results.  We fully expected to hear it was the meds and not to take them and buh bye. WRONG.  Abnormal brain activity in the temporal lobe.  Looks like he has a seizure disorder and the Wellbutrin he takes lowered his threshold for a seizure.  Since he has been taking it (for 1.5 years) he has complained of strong smells/tastes that weren't there.  Those were little seizures confined to his temporal lobe.  The seizure 2 weeks ago spread past the temporal lobe throughout his brain causing a grand mal.  Thank Gd he wasn't driving.  Thank Gd he wasn't alone with Dylan.  Thank Gd he wasn't alone.  So now he's on anti-seizure meds but is still at risk for another one.  He can't drive for 6 months.  If he has another seizure -he won't be able to drive for a year. 

Oh, did I tell you they found Dylan's has a genetic abnormality?  Yeah, he has a deletion at 16p11.2.  Explains a LOT and has put my mind at rest in many ways.  You can read about it HERE.  I now know that the seizures weren't caused by any type of abuse or lack of care which gives me a lot of peace.  We meet w/the genetics folks at CHOP and they said we are doing all the right things and they can't predict his future.  I told them that I don't care - whatever it is - he'll be awesome :)

An Update and Observations

I called the caseworker at Dylan's school.  I asked her where we stood on our request to get him a one on one.  She said "well... this year isn't going to happen".  I stopped her and explained, again, that we are not unreasonable and we understand that this year is shot where that is concerned.  HOWEVER, I wanted to know if my request for a one on one will be in his IEP.  The answer was yes.  There are still some paperwork bullshit to get through but yes, it will be done.  ~insert happy dance~

Observations....

1.  Since pulling Dylan off food dyes (all), he no longer has uncontrolable meltdowns.  When he does melt - it's for good reason and it's easily managed.

2.  My son is smart.  Like wicked smart.  I explained to him once about how there are certain foods (like candy and ice pops) that have "ickies" in them and that is what makes him so angry sometimes.  I have since found out that he will turn down candy because they have ickies or ask someone to check to see if something has ickies in it before he'll eat it.  He understands what those nasty dyes do to him physically and emotionally and he just doesn't like it.

3.  We paid over $10,000 in medical last year between me and Dylan (mostly Dylan).  It was worth every.single.penny.  His speech is coming along beautifully, we are parenting better, and he loves the therapeutic riding and just thinks it's fun.

4.  We are so very blessed to have Dylan as our son.  His smile lights up every room.  He's so full of love and is able to share it with those he cares for.  He's smart and incredibly funny (although I could live without his adoration of everything that is farting). 

5.  I'm getting better at filling his sensory needs with the strangest things. Last night, he was a bit overstimulated so I had him roll limes for me for juicing.  I placed my hand over his and pushed down and rolled the lime around the table.  He did it for as long as he needed and then went into the other room to play - calm as could be.

6.  I need to work on not getting upset when his need for sensory input involves getting into dirty water after being told not to go near it.  Gross!  I have to realize if I don't catch the signs, he'll do it himself. 

Oh that reminds me, his teacher told me that if he needs sensory input, he'll actually go into the corner, get the brush and start brushing himself.  How cool is that?

The "R" Word

March 2nd was National End The R Word day.  It calls for an end to the word retarded used as slang.  I remember growing up and slinging that word around thoughtlessly.  I cringe at those memories now.

Many twitter folks were tweeting and retweeting about ending the R-Word.  I just kinda passed those by.  I had been uncomfortable playing word police.  I don't know why.  If someone used the "n" word in my presence, I'd have an aneurysm.   Why was the "r" word any different?  Especially now that I'm raising a child with special needs. 

Yesterday a coworker was goofing around with another coworker.  They were, well, to be honest, using the speech patterns you'd typically hear from a deaf person and just laughing and laughing.  The more it went on, the angrier I got.  Don't they realize they are doing this within 20 feet of a parent of a special needs child?

I had been feeling that polital correctness has been way out of hand.  But then I realized what being PC boils down to, not policing what words people use but educating them about the words that hurt.  I need to find a calm way to talk to these people about how their words are hurting me.  However, one person involved is in charge of our IT department.  I have to tread lightly.  He has a child so I hope he'll understand.

Now, can someone please tell me where I left my balls?  The big brass ones?

And the diagnosis is....

No clue.  Basically, the doctor said that when a child exhibits the disorders that Dylan has, it will usually fall under a category of some sort (usually Autism).  However, not my boy.  He doesn't fit into any of their little cubbie holes.  He is most definitely not autistic.  He's way too social and makes eye contact and just doesn't have any of the markers they look for to put a child on the spectrum.  They did offer us a test where he "plays" with a psychologist for an hour or so and they determine through that if he's autistic.  I really don't see how that is going to make a difference.   He's Dylan.  Plain and simple.  He's my sweet, wonderful boy who has some challenges.   So the game plan is to do what we are doing and touch base as needed.

Before that appointment, we met with the school to go over the behaviorist's report.  Throughout the entire report, she says how much better Dylan attends to his schoolwork when he's working one-on-one with an adult. However, the final conclusion is... he needs positive feedback every 3 minutes.  I also had my panties in a twist about the fact that she starts her report with "Dylan is a 5 year old boy who lives with his adoptive parents".  Since I was not in a good frame of mind where this person was concerned, I decided to just shut up and let her talk and then address the issues at the end (in the event that she addresses them in her explanation).

While she did help to make sense of things, she didn't answer the big questions.  I wasn't the only one put off by her lack of suggestion for a one-on-one for him or the 3 minute thing.  I finally said to her "are you really going to put that in his IEP?"  She said that was her intention.  I pointed out that the IEP is a legal document which means the school and the teachers, aids, etc are all responsible for making sure that his IEP is fulfilled.  Who's going to track this?  Who's going to make sure that he's getting his "atta boys" every 3 minutes?  What happens if it happens every 4 or 6 minutes?  What about if he's having a bad day?  Are you going to expect the teacher to say "great left hook Dylan" when he's beating the shit out of a classmate?  Seriously???

The caseworker said "what everyone is saying without saying is.... he needs a one-on-one".  I told her yes and she started to tap dance.  I need to redo the rubric which previously indicated he did NOT need a one-on-one (it's a form that you circle answers, add it up and viola! you have a magical answer), then I have to talk to my supervisor and then, if he qualifies, we have to hire and train... I stopped her.

I told her that I don't expect new services like that for him this school year.  I understand that it's not as simple as pulling someone out of a pool of aids and saying - here's your kid.   What I do expect is that they will do whatever they need to do to ensure Dylan has a one-on-one for first grade.  That when I return to discuss his IEP, my expectations are that he will continue with the current path of services (speech 3x a week/OT 3x a week) and that he will have a one-on-one.  I will not accept anything less so do whatever you have to do to make it happen.

This is a new caseworker.  She doesn't know me.  I told her to talk to our former caseworker from Dylan's preschool (she knows her).  She'll explain who we are.  We aren't the parents who sit by and expect the school district to do everything for our child.  We do our part.  We just want them to do theirs.  He needs an aid who can manage his sensory needs, keep him engaged and on the right path so that he can learn.  This child is smart.  I'm afraid that if we don't do things the right way, he'll lose his love of learning.  That's not acceptable to me.  Not at all.

***EDITED TO ADD (thanks Liana!)

I did speak with her about the adoption thing.  I asked her first what the relevance was in case I was missing something.  She just kinda looked at me and said, what do you mean?  I told her that he lives with his mother and father - how he came to be my son is not at all relevant to the case at hand.  I told her that adoption is an event, not an ongoing thing.  I asked her if she puts in other kids' reports that Jane Doe lives with her biological parents.  She said of course not (everyone rolled their eyes at this point) and I told her to take it out.  My son doesn't need yet another label.  I have no problem with his adoption being discussed in his medical records, it's relevant.  Unless she feels that his behavior issues were the cause of his behavior, she needs to take that out.  She apologized and agreed.

Anticipation and anxiety

When I was a kid, report card time was a terrifying time for me.  I never did well (thanks to an undiagnosed learning disability) and the results of the report card always ended up in having my ass whooped, being told I'm stupid and lazy and other uplifting things like that.  I'd be a mess and the teachers would always tell me that it's never as bad as I imagine it to be.  What they didn't get was... it was that bad.   It wasn't always physical.  My parents eventually gave up on me (and reminded me of that often) so all I had to suffer were the verbal affronts.

It took a long time for me to learn that in most situations, the anticipation of the event is always more stressful than the actual event.  I had to learn the "short term pain/long term gain" concept because I kept putting things off in anticipation of how horrible they may be when I had to actually deal with them.  I've gotten it down fairly well.

However, right now, I sit in anticipation of Dylan's developmental pediatrician appointment.  It's just shy of 1 week away.  Originally, we were going to see a doctor at a satellite office so we wouldn't have to pull Dylan out of school early or take off too much time but the doctor we originally saw at the main office changed gears on me after he received Dylan's teacher's assessment forms.  He felt that it would better to see him and the new doctor together because it may be hard to accept a diagnosis from a doctor we just met.

What does that mean?  I know what it means.  I also know I shouldn't care.  I know I should just continue with my mantra - "Dylan is Dylan and you can stick any labels on him that you want but it won't change the fact that he's Dylan".   This doctor wants to tell us that Dylan has autism.  He's be put on and pulled  off the spectrum so many times it's silly.  I know it doesn't change anything but still, there is this part of me that is scared.

A chance to win a really cool book....

For those of you with sensory seeking/avoiding kids, you'll know that there isn't much out there in the way of books for them to read to understand themselves.  Well, a new one was just published and all you have to do is go here to the SPD blogging network to enter for your chance to win.

Adoption Relevance

Of course, adoption is very relevant.   My question is more towards people's insistence to constantly point out that Dylan is adopted.  I understand it's relevance in his medical reports.  A lack of a medical background is very relevant.  What I don't understand is it's relevance in a behavioral specialists report.  "Dylan lives with his adopted family".  Does she write "Jane lives with her biological family" on other children's reports?  How is his being adopted relevant to the fact that he can't sit still, gets into his classmates personal space and has a tendency to hit other kids in order to gain sensory input?   Yes, I'm pissed at the overall report.   Her recommendation of positive reinforcement every 3 minutes is laughable (although I'm told that this is common with how behaviorists write reports).  It gives no real life answers to his educational challenges.   But I'm more pissed about the inclusion of how he became part of his family as being relevant to her task at hand which was to observe him and make recommendations on how to better manage his behavior in the classroom.

So... adoption friends... tell me.... am I off base here?  Is it relevant?  Am I the only one who gets pissed at this kind of thing. 

I still remember correcting a teacher who referred to my Mom as my step Mom.  I told her not to call her that and she challenged me because "that's what she is".  I proceeded to tell her about my birth mother and the abuses I suffered at her hands.  I told her that my Mom is my Mom and that she is not to label my family.

Dylan is saddled with enough labels.  How he became part of a family shouldn't be one of them.

*EDIT - Marc thinks I'm way off base.  That maybe the fact that Dylan is adopted is at the roof of his issues or a lack of medical background is the reason for the mention.  He thinks I just don't like the report (true) and maybe looking for things.  I'm standing my ground for now - I'm open to the fact that I could be wrong but for now, I think I'm in the right.

My boy just can't catch a break... or a ball

I got to day care yesterday to find that Dylan was in the gymnasium.  I went to pick him up and usually, I can spot him as soon as I open door.  I didn't see him and saw one of the other teachers with an ice pack on a kid's head.  I asked where Dylan was and a teacher, who's back was to me, turned and there was Dylan, hysterical crying with blood just gushing out of his nose.  He took an errant basketball to the face.

I rushed him into the woman's locker room (ignoring the sign that says that children over 3 of the opposite sex are prohibited), put him up on the sink and set about getting the bleeding stopped.  It was swollen.  It hurt this a.m. but thankfully no bruising.

Initially, I wanted to take him to the ER but I called his pediatrician's office and they said not to bother, it's not like they can do anything for him if it is broken.  Today they just told me to bring him in if he has trouble breathing through his nose or if it looks crooked.

Poor Monkey.

Snowtastrophie and fevers

I'm beat.  Glad to be at work today.  Thursday we had a snowtastophie.  About a foot and a half of really wet heavy snow hit the area.  We let Dylan sleep in and when he awoke.... he was miserable.  Angry at everyone and everything.  Not at all like him.  A little while later, we realized it was 10 a.m. and he hadn't eaten or even asked to eat.  I asked him if he was okay and he complained his head hurt.  I felt his head.. yep, he was warm.  99.5 to be exact.  Okay, no biggie.  Normally, I wouldn't even give tylenol for that but with his head hurting, I gave him a bit.  A little while later, temp is down and he is happy as can be.  About 2 hours after breakfast, he wanted to go lay down in our bed to watch TV and spent the rest of the day there.  We knew something was up.  His temp shot to 101.5 where it stayed till Saturday morning.

It sucked on so many levels.  I hate seeing him sick.  It was a snow day but he didn't get to enjoy the snow.  He missed speech and hippotherapy and we missed a wonderful wedding.   However, I got something I normally don't get... a lot of long, continuous snuggles.  So all in all, not the worse thing in the world right?

Drowning

That's how I feel.  I feel like I'm drowning in information, both a lack of and overload of information.   Every time I think I have a handle on Dylan's challenges either a new one will pop up or an existing one will go into overdrive.  He's sensory seeking like crazy... still.  He gets 3 days of OT a week and hippotherapy on Saturdays and still it's not enough input.   He's still off the charts at school and at aftercare.

If you remember,not too long ago, we had to pull Dylan out of his after care program at school.  Well, we may be faced with that yet again.  His behavior borders on dangerous.  Not because he's doing something terrible, but because he just won't listen - if you try to get between him and his sensory input, he'll jump right over you... literally.  When it's one on one, it's rough.  When it's a high school kid who's responsible for 4-6 other kids, it's a nightmare.   So, we may be facing expulsion yet again.  However, one of the solutions I came up with was acceptable to the program director of the current program.  We'd hire a nanny who would take him to the center after school so he could play with the other children.  That way - he's have his friends but the center wouldn't be responsible for him.  So... after a HUGE meltdown by yours truly yesterday, we at least have a viable option.

Hippotherapy is going well.  He loves it!  It's a great tool (how would Snicker's feel about you not cleaning up after yourself?) and he has a natural gift for it.  I noticed his first day, he immediately fell into the rhythm of the horse.  Last week, a volunteer said "wow, he's in jump pose!".  This is a big deal as the kids are chest down toward the front of the horse.  It's a precarious position and one that takes months of work to accomplish.  Not my little equestrian, he did it properly his second session.  This weekend, after his third session, we were told that he's done with his current horse and ready to move on to a more advanced horse.  The horse he's been on is very smooth and gentle.  The new horse (while a very gentle animal of course) is a little more aggressive with his motion so Dylan will have to work harder to stay in the saddle.

I have a new nephew.  My sister-in-law gave birth last Monday and last night was his bris.  She seems really anxious and, well, down.  I'm worried for her.  She's a pediatrician so I'm hoping that as a physician, she'll recognize postpartum depression (if that is what is going on).  However, doctors tend to have that superman syndrome so I'll be keeping a close watch on things.

Giddy Up!

The meeting at day care went well.  Dylan is having a hard time following directions and it's a safety concern.  We came up with strategies to set him up for success.  Yay!

I have been talking a lot with the therapists at school.  Dylan needs more OT than they can offer.  In fact, if Dylan could receive OT 24/7 - he'd be a very happy boy.  His OT said "he'd mainline sensory input if it were possible - he's a junkie".  ~le sigh~ 

Hippotherapy has been something that my brain has been playing with for a while.  No, it's not therapy involving hippos :)  It's therapy using horses.  Dylan's core strength is poor.  Yes, my boy with the six pack abs has poor core strength.  Apparently his back is strong but his abs are weak.  When I heard this I knew this was a good option for us.  So tomorrow, we are heading to a stable about 40 minutes from our house that specializes in hippotherapy to see if it's a match for Dylan and for the stable.  The horse will provide him with the sensory input he craves, improve his core strength and, hopefully, continue his love of animals.  Dylan is amazing with animals.  See....



He's never been one to pull tails or poke ears or eyes.  He knows when he wants to pet a dog, that he asks permission first, holds out his hand (palm down) for the dog to smell and waits for someone to tell him it's okay.  Something he's gotten compliments on since he was a toddler.  He loves animals so what better way to do therapy and not have it feel like yet more therapy right?

That terrible sensation you get

When you get an email from the head of your child's day care telling you they need to meet with you.... yeah, I have that right now.  They want to meet with me early next week to discuss strategies to use with Dylan as they've had a few "incidents". 

School is complaining because they've had a few "incidents".

My heart is breaking because I don't know how to get through to him.  I don't know what is wrong.  I can't fix it for him. 

I'm terrified that there is more to this than meets the eye.  He has been stimming up a storm lately.  His OT said if he could mainline sensory input he would.  There are days (most days actually) where he just doesn't seem to get enough. 

He needs more than what he's getting.  More what... I'm not sure.  I have no money to throw at this.  I already pay out of pocket for speech therapy (on top of the speech he gets at school), behavior therapy (thank Gd we have an appointment tonight), social skills class, one on one tutoring.  I'm trying to find someone who will do OT either at his day care or on the weekends but I have no idea where I'm going to get the money for it.  I'm also considering looking into Hippotherapy.  Right now... I just feel if I do anything else, it's worthless till we know what the hell is happening. 

If anyone has any insight, I'd love to hear it.

Looking back

9 years ago, I was just waking up knowing this would be the day I would wed my love.  9 years ago today, I got up, went to the salon, got myself all done up, went to the synagogue, got dressed and at 4:00 p.m. walked down the isle with my Mom and Dad.  9 years ago today, I married my best friend.

5 years ago, I was looking forward to a nice dinner out but a little sad that we hadn't heard anything about going to Guatemala to pick up our son.  5 years ago, I was heading home from work when my cell rang.  It was a number I didn't recognize and almost didn't answer it.  Fortunately, I did.  It was the liaison from our adoption agency.  She said "we need you in Guatemala on Monday" (this was Friday).  I called Marc and told him he wasn't going to be going to the Monday Night Football game that we were given tickets to because we would be in Guatemala.  Original Post Here.  5 years ago we sat in Marc's office, with me parked illegally, and for 2.5 hours made our plans to go to Guatemala.  I didn't even get a ticket :)

December 2nd is a wonderful day - it brings amazing men into my life.

A Holiday Rant

First... for those of you celebrating Chanukah, Chag Samach!

Okay - now onto my rant.  Here in Philadelphia, there is a Christmas Village at City Hall.  Vendors are set up selling ornaments, tinsel, tree accessories, etc.  There is one person selling Chanukah stuff and one vendor selling Ramadan stuff.  For the most part though, it's Christmas items.

Apparently, some PC idiot got offended and now the name Christmas is being taken down it's now being called the "Holiday Village".  WTF!  Let's look at this please... they are selling ornaments, tree skirts, tree stands, tinsel, angel and star and various other tree toppers and we now have to call it a Holiday Village because there are just so many other holidays that are celebrated with trees and ornaments and tinsel and the like.  Let's see there's Arbor day, no wait, that's not right.  Um, there's Eid Al-Fitr, no that's not it.  Um, Yom Kipper, wrong.  Hmmm oh yeah... there is only one holiday that uses these items and it's Christmas.   Please untwist your panties and let's start calling things what they are without getting overly PC please.  This little Jewish girl has absolutely NO problem whatsoever with a Christmas Village.  If it bothers you so much, start up your own _______(insert religion here) Village.

Let's show a little common sense going in to the New Year please?  And to the parent of the little Jewish girl who was overhead at the Village asking her parent "do we have a Village too?"  the answer is simple.  No sweetie, that's not how we celebrate Chanunkah.  We can, however, enjoy and appreciate what our non-Jewish friends do to celebrate their holiday.

Thanksgiving

Our day started out nice enough.  Got up, showered and dressed and out the door we went to the Philadelphia Thanksgiving Day Parade.  It was lovely.  Dylan lost his mind when the Scooby Doo float went by.  He's on a Scooby kick.  He was fascinated with the big balloons and worried about Frostie when his strings got caught on a light pole.  He just sat atop Marc's shoulders, eating a soft pretzel and watching the wonder that is a parade.  He loved the bands and, since he was wearing a hat with ear flaps, it seems it was enough to filter out the sounds he doesn't like.  Overall, it was a great experience.


Then, Marc's mother offered to take Dylan for the afternoon and bring him home for dinner. Great, we'd have an easier time getting the house cleaned up and dinner prepared (~insert Gd laughing here~).

When we got home, we realized that we were missing a few things so off to the market I went. Got home and realized we had been shorted our squashes at the produce store so back out the door I went. Got home and Marc tells me my Mom stopped by to drop off soup. Great.

Five minutes. Phone Rings. Mom says to me "I just got rear ended. I'm on XXX Road (right around the corner from me) and I'm hurt. I scream at Marc and run out the door and fly over to the accident site. My heart was pounding but it almost leaped out of my chest when I saw a fire truck. I pulled in behind the police car and took off running in the direction of the accident with people yelling at me. Fuck em. That's my Mom. I got to the car as the paramedics were taking her out on a backboard. I totally lost it. It's been 4 years since I lost my Dad and all I could think of is that I can't lose her too. The paramedics were wonderful, told me she was fine and that it was just precautionary. I went home, got Marc and took him back to the site to take her car home (thankfully it was drivable) and ran into the city to get my sister and came back to the hospital together. We stayed with her, she had CT Scan and x-rays and proclaimed her to be fine. She's hurting like hell today but I'll tell you what...

I'm really thankful that she's okay. I'm thankful that my wonderful husband cleaned the house and made almost every dish for the Thanksgiving meal and then cleaned up everything by himself. I'm thankful we are all healthy, have what we need and have a loving family.

I hate it when my spidey sense is right

I've been worried about Dylan.  Something felt off.   He's been having behavior issues off and on the whole year.  I'd say 90% of those issues are sensory related.  I just didn't feel they were managing his Sensory Processing Disorder or SPD correctly.  I was right.

Last week he had a perfect week. No issues with behavior at school or even at home really. I had noticed that a lot of the stimming he was doing at home (verbal and physical) was greatly reduced. He seemed more calm, more center. Not so much this week.

He came home Monday and was a bit of a sensory junkie. I knew the report wasn't going to be great before I even opened his book. The notes stated "had a great morning, not so great afternoon". Can someone please tell me what the hell that is supposed to mean? How can I help the teacher if I don't have details. GRRR okay, I know she's busy and can only do so much so I'll leave it alone.

Last night, when I went to pick him up, he was playing and throwing himself to the ground. ~insert HUGE red flag~ He was also being mouthy (chewing on anything he could) and being fresh with me. I usually will look through his stuff at daycare while he plays. I just couldn't bring myself to look at it.

I got home, opened it and sighed. Dylan had a terrible day culminating with him hitting another child. Ugh, I feel so bad! Now, if you have never had a child with an articulation disorder, you won't know the heartbreak it is to see your child suffering but he just can't get the words out. He looked like he was in physical pain when I was asking him what happened. He couldn't get the words out. I have no idea what happened. I emailed the teacher.

Her response was that she wasn't there when it happened (I think he was in art) and would find out from the teacher. She said that his afternoons are rough. She thinks it's because he's tired. He spins in his seat, won't sit still (stimming) and they are using a sensory diet but it doesn't appear to be working.

My response to her was explaining that he is used to long days and yes, while he does get tired in the afternoon, if his sensory needs are met, he should be able to attend to his work.  I also asked... "What tools are you using in the classroom?  Are they being used consistently or in response to behavior?  Do you feel an aid for Dylan would be in order?"

 When I observed in his classroom a week or so ago, I noticed that he was stimming.  I waited to see how it would be handled.  It took him sliding off his chair onto the floor under the table before the aid went and got his weighted vest.  He immediately calmed down.

I think it's time to request a meeting with the child study team leader - I want another OT session added to his IEP (he gets 2) and, depending on the response I get from his teacher, I may demand he get an aid.

Speaking of entitlement....

Where does a parent's responsibility end and the school/state's responsibility begin? Our audiologist has recommended that Dylan use the software program "FastForward" next year. It's software that helps to retrain the brain's ability to process information (neat huh?). The school doesn't offer it. It's several thousand dollars from what I hear and we don't have the money for it. Someone said to fight the school, make them pay for it. That feels wrong to me. I am his parent - it's my responsibility isn't it?

A coworker told me her sister got funding from the state to build a sensory room for her son. $1,000 from the state of Massachusetts! How cool is that? Her son is severely delayed and is blind. She also has very limited income as well. I looked to see if something like that was offered locally for Dylan. It appears there is. However, I stopped. There are so many people in our state who probably need these services more than us. Would a sensory room or something like hat make a huge difference to Dylan? Part of me wants to ask for help - we could really use help but part of me doesn't want to take away from someone who may need it more. I guess it's the Jewish guilt thing. I don't know. I really need to process this. Anyone have any insight?

Parent Observation Day

Today was parent observation day.  A day to go into school and see what my son's day is like.  I came out of it excited and terrified all at the same time. 

I love the teaching methods being used as they really seem to be speaking to Dylan.  However, his sensory seeking is off the hook.  I was happy to see one of the aids get and put his vest on him but it did take a while for her to pick up his cues.  Now, I know, I'm his mother and I can sense his seeking before he actually does it but he's having behavior issues that are tied to his SPD & CAPD.  If they aren't properly managing both, he's going to have increasing problems.

Now, we do have parent teacher conferences next month so I'm going to wait till then to address it. I did call his teacher out though. Yesterday we got a note home that he had a rough day. He refused to come in from recess. I emailed her and asked her what was their action plan as they have had this happen before with him. Her response was that she'd talk to the OT. WTF - the OT isn't going to do what I told you to do months ago which is to set up his expectations daily before the troublesome activity. "Dylan, we are going outside for recess. What do you need to do when I call you? Come In? Yes, thank you". That's all it takes for him to comply. When I pressed her on it she admitted that the class was a bit off because of her and her staff being sick and they didn't set him up properly yesterday. Great, you give him a time out for something you could have avoided. Nice.

It was nice to see him in speech therapy and in OT. Kid gets a little massage before each session. Lucky!!! We had a great session with our therapist last night and he gave a great example of central auditory processing delay.

You work in the city. You come up from the subway and a big bus flies down the street 3 feet away from you. You barely even register it as you are used to it. Your mind tells you it's nothing to worry about.

You aren't a city person but are there on business. You come up from the subway and a big bus flies down the street 3 feet away from you. You jump back in surprise and fear. Your brain isn't used to it and kicks in your fight or flight.

These are examples of prioritizing. Your brain tells you when something is important and when it's not. Even though Dylan had to deal with a time out yesterday, his brain will still not prioritize his teacher calling him in from recess because it doesn't process that way. He's not being defiant. This is happening on a neurological and even cellular level. CAPD is going to be a hard nut to crack.

Entitlement and parenting

Yesterday, while waiting for the train, I notice two adorable, fashionably (expensive) dressed little girls.  They were about 5 and 8 and waiting for the train with their mother.  Now, I like to ride in the first car so that was the area I was waiting in.  The train arrives and a crowd gathers where the doors are about to open.  As they open, the little darlings literally threw themselves through the crowd, knocking me and two other women to the side, yelling "outta the way!" and ran up to the seats by the front window.  ~insert jaw drop here~

The mother, who witnessed this entire thing, said nothing to her little angels.  One woman who got pushed told the girls they weren't nice and they just (of course) rolled their eyes at her.


They then proceeded to sit in their seats with their feet on the window of the train.  Again.... Mom said not a word.

Can I get a WTF here please?  Had this been 30+ years ago, the car would be bloody from the beating my mother would have given me for such behavior.  Had this been Dylan behaving in such a manner, after apologizing personally to ever individual he pushed, his little butt would be in the back of the car.

I try to practice attachment parenting which includes gentle discipline.  However, I have discovered, like all parenting styles, there are those "fringe" elements.  Within the gentle parenting community there are parents who believe that punishment and consequences are not gentle and therefore should not be used.  Again, get I get a WTF!  How the hell do kids learn boundaries without consequences?   How can you administer consequences without punishing a child?  Now, punishment doesn't mean physical violence.  I don't believe hitting accomplishes anything but sending a wrong message to children and making them fearful.  At least, that's what it did for me.

So tell me wise internet....  What did these girls learn today.  If their mother practices this no consequence parenting style (which I'm assuming based on her reaction to her children's behavior), what message did she send them?  That it's okay to knock over adults in order to get what you want?   Charlie suggested I wish them well in prison which was great but I got the facebook message as the girls were getting off the train.

Therapy

We see a behavioral therapist.  We discovered early on that two incredibly different parenting styles + one incredibly intelligent, manipulative little boy = a lot of headaches and heartache.  So... we found a therapist who not only treats Dylan but treats us as well. 

Man, he really can call us on our shit when warranted. He can also be incredibly supportive and gives amazing  parenting techniques and ideas. The result has been we are coming together to parent more. I have to learn to back off and Marc needs to learn to step up. We both want to do what's best for Dylan so we are learning and it's working for all of us. Problem is... he's crazy expensive. But as I've said in the past, I'd sell myself in order to continue seeing him. He's that good.

I will say that he worried us a bit. He seemed surprised that Dylan sleeps about 11.5 to 12 hours on average. He said that while it works for us now, as he gets older, developmentally, he's going to want to stay up later. I don't see that happening any time soon (he says next year but I think it may be longer). But he seemed very concerned about the amount he sleeps. Now it's got my brain going. I'm wondering if I should call his pediatrician and discuss it with her. Right now, I'll just sit with it. He's always been a fantastic sleeper. Most parents would kill for their kids to go to bed at 7:30 p.m. every night right?

SHE'S BACK!!!

Baggage & Bug are back!!!

~doing happy dance~

Update on spidey sense and a small milestone

I emailed the teacher.  She was out sick Monday and Tuesday and Wed wasn't quite right yet.  The schedule has been off so that would explain why Dylan is off. Okay onto the milestone :) Last night, around 7:15 p.m. Dylan came up to me, placed my hand on his face for some face squishes and said "Mommy, I tired, I go to bed". ~waits for everyone to get over their jealousy~ I said fine, took him upstairs, got him washed, brushed and into PJ's and then it was off to bed. I snuggled with him for a few minutes, came downstairs at 7:35 p.m. and announced "he's out!". He's getting better and better at self regulating whether it's sleep, eating or sensory.

My Spidey Sense Is Tingling

GAH! I hate it when this happens. I feel that something is off with Dylan. I can't place it. I think his teacher may have been out this week as nothing has been touched in his book bag all week with the exception of Monday and Wednesday. Wednesday we just got a positive behavior report and that's it. Nothing is written in his work book. No speech work nothing.

He also seems a bit off. Like something isn't right. This morning he said he didn't want to go to school until I told him it was Shabbat (he loves Shabbat).

I really hope it's nothing but it's quite rare that my intuition says something is off and it's not.

!#$@#@! Insurance

Our new insurance policy begins next month.   Unfortunately, Dylan's therapies are still not covered.  But some of our copays have gone down (yay), well visits are now copay free (yay) but my cost of insurance is up by almost $90 and... my beloved gastocrom is going from $40 for a 2 week supply to $70 ~thud~. I'm going from spending $1,040 for Gastocrom a year (approx) to $1,820 a year.

Where the hell is my health insurance reform. Dylan and my medical bills are absolutely crippling us financially.

I tried to go without gastocrom. I weaned myself off of it and have gone a few weeks without taking it. I've been flushing daily even though I'm taking my aspirin (I flush due to an extremely high progestaglandarin D2 level). My brain fog is terrible. I can't keep a straight thought in my head. I hate to say this but I really need this medicine but it's so fargin expensive it drives me batty.

Of course, the only population (that I'm aware of) that uses this medicine in this form is the Mastocytosis sufferers. Guess they know they have a captured audience so they can change whatever the hell they want. However, I shouldn't bitch too much, I do have insurance and it does cover the med. For that I am grateful.

Just watch this... please

Thanks to Dad Gone Mad

Singing

Yesterday, Dylan got himself into a snit.  After a warning or two, I sent him to his room to cool off.  I went up about 5 minutes later and I could hear him singing to himself "show me the way to go home". 

Drama

Last Monday - at Dylan's after school care - the woman went on and on about how adorable and sweet he is.

Last Friday - at Dylan's after school care - the woman told me that Dylan slapped another boy. We talked to him about it.

We reminded him over the weekend that hands are not for hitting, we don't hit our friends, etc. This past Monday - nothing. This past Tuesday - at Dylan's after school care - the woman told me that he is hitting the kids, interfering with their games and that this may not be the right program for him. I tried to explain his needs but she didn't want to hear it. She made it very clear to me that in order for her and her staff to properly care for Dylan and his classmates, they would actually have to do something besides sit on the bench and hope the kids don't kill each other and she wasn't willing to do that. We asked him why he was hitting the kids and he said in sad little voice "Mommy, they won't play with me". ~insert knife in Mommy's heart~

Fine.

Yesterday, called Dylan's old day care to see if they had openings. CHECK!

Yesterday, called the district's transportation department and arranged for a bus to pick him up in the a.m. from the house. CHECK!

Yesterday, called Dylan's old day care to verify they got the information and make sure they were ready to roll. CHECK!

Yesterday, called the after school people and told them Dylan won't be back and why. They thanked me for being professional in my delivery of the news (I guess they get a lot of screaming parents). CHECK!

Called Marc and let him know that Dylan starts back to old day care... Thursday. Yep - got it done in one day! ~doing the happy Mommy dance~

So... instead of Dylan being stuck in a big all purpose room (nightmare for kids with auditory processing and sensory disorders), he'll be in a wonderful place where he can go swimming, play basketball and gaga (Israeli dodge ball), continue to learn about Judaism, and be in an inclusive environment. YAY

Back To School Night

Tonight is back to school night. We get to hear presentations from the principal and others from the school, meet with his teacher, her aids and the therapists who work with Dylan daily and get to meet the rest of the parents of the kids in the room.  I'm really looking forward to it.  Dylan, in just the few weeks he's been in Kindergarten has been doing incredibly well.  His speech has been improving daily - coming home with new words (he currently likes to call things strange), his behavior is getting better and more age appropriate.  We are just thrilled. 

Of course... I could have lived without hearing that he slapped a kid yesterday at after care.  I asked him why and he said the boy wouldn't play with him.  ~sigh~  We talked about keeping his hands to himself.  Hopefully he gets it.

Like speaks to like

Last night, we had the pleasure of attending a birthday party for one of Dylan's classmates. The family lives about 5 minutes from us and has 4 boys. Dylan's classmate is the youngest of the bunch (oldest 16) and is as sweet as the day is long. There were about 4 other children in attendance which was a nice easy number for all the kid to manage.  

The birthday boy is older than Dylan (Dylan's class is Kindergarten through 2nd Grade).  I asked the other Moms of the older boys "is the teacher as amazing as I think she is?"  I got the same response from all.... "no... she's better".

One boy was there with his grandmother.  When we sang Happy Birthday, it triggered an auditory sensory response and he had his ears covered.  No biggie - we all get it.  I don't think Grandmom realized that and was trying to push his hands down.  I just wanted to walk over and let her know that it's okay - we all get it.

Marc and I did a great job (if I do say so myself) parking the helicopter for the night.  It was hard.  They have a trampoline in the back yard, no net, the metal bars weren't covered well and it was ripping in some parts.  Dylan had a blast jumping off of it.  Oy.

One of the boys has cerebral palsy.  His mother obviously allows him to decide what he can and can't do.  He wanted to go on the trampoline with the boys and she picked him up and put him up there.  The boys did lower their level of insanity a touch but they rough housed with him and he loved it.  At one point, the birthday boy stood up and the little guy clothlined him and knocked him right on his butt.  The parents were hysterical!  We laughed a lot last night.  It was so nice.

Tomorrow is back to school night.  We get to meet with his teacher and, hopefully, his speech and OT therapists.

Understanding stuff

I am currently reading Like Sound Through Water by Karen Foli. It's a story of a mother and her journey to discover her son has an auditory processing disorder. This book has been very difficult to read. It's very well written. But it hits home at every turn. When she speaks of her knowing something isn't right and being told by her husband that their son will be fine and will catch up eventually I felt that knife turn. When she speaks of the pain of reading that first test result where her son's testing is so very low and her agony and confusion. Gd I could have written a lot of this book.

So... it's slow going. I read, I get choked up and put it down. However, I have to get my ass in gear because it's a library book. Actually, I took out three books. All about various disorders that Dylan has been diagnosed with or is suspected of having. My Mom is giving me grief that I need to stop reading but I'm learning. As I learn, his behaviors make more sense. The more they make sense, the less stressed out I get over his actions. She doesn't get that though and that's okay.

Kindergarten is going well. I love his teacher and his therapists. They have been great with communicating with us and Dylan is really enjoying himself. I was a bit concerned with the after care but now I'm a little more relaxed. I've gotten to know the care givers and he's got himself a few girlfriends to play with (yes, they are about 8-10 years old). He's quite the Romeo my boy. His teenage years are going to be very interesting indeed!

Show me the way to go home...

Dylan loves music in all it's forms. I've sung to him since he was a baby. The first song he ever "sang" was Rainbow Connection and then he just would pipe up with words at the right time. He loves to strum his guitar and sing songs, usually making up words when he can't remember the right ones (which we love) but he never sang WITH me. That was... until the other day. I was driving home, singing "show me the way to go home", you know, from the Jaws movie, when all of a sudden, he starts to sing WITH me. OMG it was so much fun! Then I realized... his first song that he sings correctly and with me... is a drinking song. Yeah, pass me the mother-of-the-year award. heheheh Now we sing together every night on the way home. I'm sitting at my desk at work thinking about what songs we can sing on the way home. I love that he loves music so much. He also loves shows. My MIL took him to his first live production. It was "If You Give A Mouse A Cookie". He loved it. Sat through it with very little fidgeting at all. At summer camp, his advocate loved the days when the older kids would put on a show. It was guaranteed that Dylan would enjoy seeing whatever production they put on.

~spit~

That's what Dylan did at lunch yesterday. He spit into the food. I don't know if it was the food for everyone or just his own but ewwwww. I emailed his teacher this a.m. apologizing for his behavior, letting her know we addressed it at home (no punishment as he was given a time out at school) and asked her if she knew what may have caused him to do that. It's very out of character for him. He did it once before at day care and we know it was a frustration thing. Her response made me adore her even more. She said that she was thinking about it last night and thinks it was a sensory thing. He was pulling at his tongue before it happened and had licked the table ~insert confused face here~ prior to his spitting. She'll talk to his OT today to make sure that he's getting the appropriate amount of oral stimulation he needs. I have been told, by a few parents, that it gets harder as the kids get older to get the right services for children with special needs. All I know is what I have now and let me tell you, it rocks my world.

Overwhelmed

Last week, we had our final testing at the audiologist's office. Dylan's behavior therapist, Mr. D., feels that contrary to what his developmental pediatrician thinks, we are looking at a central auditory processing disorder (CAPD) vs. your run-of-the-mill ADHD. We found an audiologist who would see us since most won't touch a kid for CAPD until they are at least 7 (not mature enough to handle the testing which requires they sit for long periods of time and attend to tasks). Well, this audiologist (top in her field) does the testing in small bits so she was able to fully test him over 3 visits and the outcome was.... he has CAPD. Challenge is, she really can't give him that diagnosis for at least a year and be taken seriously but we know and we can now work towards helping him. Except, nothing really helps. That's what Mr. D told us. Mr. D, in addition to being a therapist, also has a child with CAPD. He's done it all. He's tried it all. He said we basically need to stay on him to keep trying and keep working his butt off in school. It's going to get harder because he's not going to want to always work hard so it's our job to keep him on task. David used the "d" word last night. As in "your son is disabled". I am really struggling with this. I mean look at him, he's strong, he's healthy, he's smart. How can you call this child disabled. But he is. I know that but it's killing me.

It's been a while

Is anyone still out there? Sorry it's taken me a year to write but damn life has been busy. I read back over last year's posts and laughed when I read in February 2009 I posted that Dylan had "a bit of a speech delay". Turns out it wasn't that simple. He has a severe speech delay. He also has dyxpraxia, sensory processing disorder, central auditory processing disorder, static encephalopathy, and possibly ADHD (you don't need me to post a link to that one do you?). I have spent a good chunk of my free time reading up on each of these disorders to ensure that we are doing everything we can to ensure that Dylan will have a productive school and home life. I've found the more I understand these delays, the more I understand his behavior. Also, seeing a behavioral therapist helps tremendously (anyone in NJ who needs a recommendation - let me know). I have also taken up sewing. I made Dylan a quilt ~insert puffed chest~ and am in the planning stages of making one for my Mom and Sister. We are financially strapped so buying the material is just going to have to wait. Between paying for Dylan's day care the past few years and the private therapy, let's just say that McDonald's is gourmet night out. Blech. We are on the right path though, we are working with a financial guy to get our bills down. Hopefully, we'll see some light at the end of this tunnel in the next few years. So.... how are you???

4 Years ago

Dylan was born. 4 years ago today I was in Boston, staying with our dear friends Andy and Lori just waiting. Waiting to become a mother. 4 years ago today, in Guatemala, a wonderful woman gave birth to the boy who would become my son. She has been on my mind a lot today. I wonder about her and how she is. I would love to reach out to her but my fear (and Marc's fear) is that we will hurt her by contacting her. I don't know. It's amazing how much has changed in 4 years. He's all boy now. No more infant, no more toddler - all boy. Running, jumping, playing. He's skinny because he'd rather play than eat (a skill Marc and I are trying to master). He loves to explore the world around him. He loves to be active. He's a great eater and a wonderful sleeper. He's still my baby and lets me hold him and rock him to sleep. These days I think it's more for me than for him. He talks up a storm and is becoming more independent. Today Marc and I are working a half a day, picking up Dylan from Camp and heading to the beach.

URGENT! Prayers Needed!

My dear friend Kim, after a very difficult pregnancy, had a beautiful baby girl. Ellie needed a shunt put into her brain so yesterday they did the surgery. After the surgery she was doing well but ended up having to be put on a ventilator.

Please keep little Ellie in your prayers (good thoughts/good vibes, etc.)

Michael Jackson

Yeah, I know, not something you'd ever think you'd see here. However, I am saddened by his loss. He, like Farrah, was a huge part of my childhood. I remember going to USA Skating to see the premier of Thriller. I loved his music, his moves, his talent. When the accusations came out that he had molested those kids... part of my childhood was lost. Because of his wealth, he could easily buy his way out of the situation. Did he? We'll probably never know the truth. Part of me wants to believe he was the victim of his fame and that he only wanted to be a friend to all of the children in his world.

I guess you're wondering why I'm blogging about it. The latest "news" to come out is that Michael may not be the biological father of his children. That he may have used a sperm donor. What is bothering me is the fact that the media is claiming Jackson not real father of his children. That "Surprise! Michael Jackson's children look nothing like him!

To all the rags printing this garbage... WHO THE FUCK CARES? He is their father. He has been the man raising them and these poor children are mourning the loss of their father. Not a stranger. Why is it necessary to point out they don't look like him. I know plenty of children who don't look like their parents (and yes, they are biologically related).

The adoption community faces this fight day after day. Just because Dylan is not biologically connected to me does not mean he isn't my child. I love him with the fire of a million suns - as does his father. The fact that we don't look alike means NOTHING.

So, to the media, if you have nothing to nice to say... do me a favor and STFU.

And now for something completely different.....

My masto is relatively stable so let's talk about the more important things in life.... family :) Dylan is going to be four in just a week. FOUR - can you believe it? My baby is gone and has been replaced with the most energetic and spectacular child. He loves to explore and loves books. He romps with his friends at his new day care and sleeps like a champ. He'd rather play than eat which is a skill I really need to develop. Now that we've got this medical crap out of the way, I need to play more. I've been so locked up in my head that I haven't been playing with him as much and that's no fun for any of us. We had a party for him with family & very close friends yesterday at Smith Playhouse. This place is truly Philadelphia's best kept secret. My best friend, Joelle, was so impressed at how safe and secure it was. Only 10 and under allowed in the playground so no teenagers bullying around the little ones. The playhouse is 5 and under. He was so cute singing "Happy Birthday to Me". He had such a blast. His Pops (Marc's Dad) came in for the occasion which was nice. I think it's the first time our families were together where I didn't stress. In case you didn't know - our families have never gotten along which has been a source of much angst for Marc and I. We finally told them that it's their problem not ours. My Mom said hi to his mother (huge step) and even spent the evening hanging out with us, Marc's Dad, brother, sister-in-law and niece. Nice time was had by all and I think those walls are slowing starting to crumble. This is a good thing because I really don't want Dylan caught up in this type of nonsense. I can't wait to go home tonight. Marc is leaving early and is going to put together Dylan's new big wheel. It's the original kind (not one of the fancy shmancy ones) and he had tried it at a neighbor's house and loved it.

More on Masto

So while I was up in Beantown, Dr. Castells ordered some additional testing. Some blood work and a urinalysis. I'm happy to report the blood work came back normal. Urine... not so much. My Prostaglandins:D2 levels are, um, elevated. By elevated I mean 10x normal (Normal is between 100-280 and I'm 1241). I was totally freaking out.

My dear friend Fiona, a fellow sufferer and genius extraordinaire provided me with some information on PD2 and Masto. Turns out it has something to do w/lungs, can be associated with COPD and of course, my thoughts go back to Dad.

I know he had this. I am positive about it. I can't help but wonder... would his COPD been as bad had he been diagnosed? Would taking a different regimen of drugs made his quality of life any different?? Not that this changes anything but it does make me very sad. Sad that something could have made his breathing a little easier if only they had found this.

Next weekend I have a follow up appointment with my allergist. From what I gather from Dr. Castells, it was quite a find she made... this masto. She seemed surprised that she would order a tryptase level. I want to give her a big hug. Not that I'm happy to have this disease but more that it was caught very early on (comparatively speaking) and hopefully, with the proper medications, I can expect to have not only a normal life expectancy but a good quality of life as well.

Of course, quality of life is, in some cases, a choice. If I don't choose to get my fat ass in the gym and get my eating under control, I won't see a good quality of life. Marc and I have an appointment with a nutritionist (we had an initial appointment and are very excited at the prospect to be working with her) and next week - I'm back in the gym.

Andy, Lori & The Twins, GDT'rs and Dr. Castells - what a weekend!

Holy smokes what a weekend! It started off with us flying out of AC Airport. Unfortunately, our flight was delayed 3 hours and my big fear was not getting up to Boston in time for my appointment. Thankfully, we did take off and had a quick, uneventful flight.

Upon arriving in Boston, our darling friend, Andy, picked us up and took us to his house. We chowed down on pizza and beer and just relaxed while they "dream fed" their twin daughters. I always knew Andy & Lori would be amazing parents. Seeing them in action just showed me how amazing they are. Their girls have bad reflux and have developed bottle aversion. When Dylan was their age, he'd down 6oz of formula in about 10 minutes. These sweet angels take about 1/2 hr just go get down 4oz. I just hope that their reflux fads into their memory and are able to eat without pain soon.

Next morning we were up early and headed into Boston. Andy dropped us off on Newbury Street where we had breakfast and just relaxed. Around 11 we headed over to meet my friends from the GDT at The Savant Project which was a 2 mile walk in the rain. We stopped at Northeastern University's student center for a break and an extra umbrella.

We had an amazing lunch with some amazing ladies (Marc was quite happy to be surrounded by a bunch of beautiful women). The hour or so flew past and then Marc and I were on our way - walking to Dr. Castells' office compliments of Google Earth.

What we hadn't realized is that we put in the wrong city so what we thought was only a 2 mile walk from the restaurant was really a 7 mile walk from the restaurant. When we realized our (ok my) blunder, we hopped in a taxi. I thought the taxi driver was trying to pull a fast one - going behind these buildings and such. Much to my delight - he knew exactly where we were going. Unfortunately, I left my cell in his taxi. Marc had the receipt so we called the cab company and the driver brought the phone back. He tried to give him a $20 but the guy took $10 (for gas) and said that was enough. Nice guy!

We then had our appointment with Dr. Castells. I felt like I was meeting with the Dali Lama. She was a bit uncomfortable with the idea of me taping the conversation but fortunately relented (because I forgot half of what she told me). She said I have a normal life expectancy with this disease. I may have an increase in some symptoms but nothing life threatening. No reason to think I'll just start shocking but should carry epi just in case. Avoid triggers as much as possible. Take care of myself as much as possible. I do have urticaria pigmentosa pretty much all over my body (not just on my legs like the hematologist said). She's added gastocrom and ketotifen to my regimen. The gastocrom is covered by insurance (yay). The ketotifen is not available in the US so I had to order it from the UK. It's supposed to be the best antihistamine in the world.

Back home on Saturday morning after a few more snuggles with the Boston Babes (and the twins too -hahahaha). Dylan was at Bubbe's and had a blast. Sunday we just relaxed and now are trying to get back into the swing of life again.

Travel, Parenting & Masto - not a pretty mix

We went out to Boston to celebrate our dear friends, Andy & Lori's, baby naming for their beautiful twins. The three of us flew to Boston (via Atlantic City - what a pleasure!) and things were going beautifully... on the surface. Just under the surface my anxiety was rearing it's ugly head. Pushing it down, I pushed forward determined to just suck it up and deal (instead of doing the intelligent thing like taking my meds).

At the synagogue, Dylan understandable was getting antsy so I took him out of the chapel to wander the halls. He hadn't gone to the bathroom in a while so we went into the rest room and I told him it was time to potty. He didn't want to go. I told him to just try. No! Dylan goes into meltdown mode. Full on screaming at the top of his lungs, kicking, hitting. I wanted to die. I took him out of the bathroom hoping it would help. Nope. Took him downstairs (chapel was on 2nd floor). Nope. Outside, more melting. Meanwhile, 45 minutes has elapsed and it doesn't occur to my darling husband that Dylan and I have been gone a while and that maybe, just maybe, he should check on us.

By the time I am able to get Marc's attention my anxiety is in full blown attack mode. I manage to get his attention, he walks out, I shove Dylan at him and lose my shit entirely as I walk away. Cried for over an hour, burning my eyes... yet again, setting of a bad masto event with major flushing and hives. Finally get back to the hotel, get meds in me and calm down. Now... since, my stomach has been in shreds. The only good thing about having this diagnosis is that when something happens in my body, it makes more sense now than it did in the past. Someone recently asked me if I found that my symptoms have been worse since my diagnosis and I said no - just now I know what they are instead of some weird pain, nausea, etc.

I'm so tired. I can't wait to see Dr. Castells on Friday. I don't know what I expect. Maybe she'll be able to waive some magic wand and have all this stuff make sense.

One thing is clear... I need to get on a regimen of anti-anxiety meds sooner than later (yes Ms. L, I will be calling your pyscho-pharmacologist shortly). I need to do something as I really can't live like this. It's not fair to me, it's definitely not fair to Dylan or Marc.

Trying to resolve the past and look to the future... all without losing my mind

My beloved sister who I love with every part of my being asked me to do something. She wanted to do a grandchildren portrait for my Mom for Mother's Day. Ohhhh, what a fun idea! Then I realize, that means my brother's (the one we're in reunion with) would be included. Not that they shouldn't be. It's been over two years they've been in our lives and while we are still not good enough to celebrate their children's birthdays with them (it would upset my SIL's parents I guess), my mother would move the moon and stars for them.

Because it was my sister who asked, I agreed. I then bawled my eyes out. My heart aching with the knowledge that this is something my father would have loved but will never be part of. Not by his choice either. Oh, and I still have a hard time looking at the youngest because he looks exactly like my father.

I have to figure out how to forgive him. I really want to but every time I go down that road, so many issues pop up in my path, blocking that road.

I guess I'm glad it was my SIL. She's easier for me to take for some reason. The kids were amazing and my Mom is going to plotz when she sees the portrait we had done. The kids were all so well behaved (mine being the most photogentic ~preen~) and I even ordered some for myself. It's going to take work but my goal is to have them on display by Dylan's birthday.

Sorry I've been MIA

Been going through my (hopefully) last go around with testing before my appointment with the world renown Dr. Castells. I had emailed her asking what tests she'd like to see prior to my coming up there since I am doing this trip out of pocket and would rather have my testing done and paid for by insurance.

So my list is as follows....

Blood Work
24 Hour Urinalysis
Bone Marrow Biopsy
Bone Scan
CT Scan (with and without contrast)
Skin Punch (can't wait to get these fucking stitches out already).

Now we wait for the results (bone scan normal) and we have our appointment at the end of May.

_______________________________________________________________________________________________________ Now on to the important things... Dylan

OMG he's getting so big! I can't believe he's going to be 4 soon. He amazes me every day with his intelligence, his beauty and his humor. Just when I think I can't possibly love him more... I realize I do.

Today we had our final meeting for IEP services. He's going to receive speech and behavior therapy. He's starting a new day care center and then a week later will begin to receive his services. I'm a total basket case. I think the transition will be harder on me than on him.

The teachers at his new day care center are heartbroken. I can't say I blame them.

Having a hard time wrapping my head around things

You know... most people who have a chronic condition or a disease, there is a process. If you are suspected of having a tumor, they do a biopsy. If they find "x" kinds of cells, that means it's malignant and you have cancer and treat it with a number of different things. If they find "y" cells, it's benign and you just keep an eye on it. If your husband has low sperm count and poor morphology and you have a high FsH chances are you're not getting knocked up naturally, if at all.

I get that... diseases and their processes usually make a lot of sense to me. This mastocytosis bullshit??? Not so much. Trying to understand why one person's levels are so much lesser than mine yet she can't leave her house otherwise she shocks. I'm trying very hard not to obsess about this... I really am. But I'm failing miserably. I want to understand this. I want to know what this all means. Unfortunately, I think I'm going to have to wait until I meet with Dr. Castells at the end of May (blech).

Oh, I emailed her yesterday and asked if she wants me to have any other tests prior to seeing her. I need to get an abdominal CT and a densitometry (off to google that one). I love my regular doctor. She is amazing. The most caring doctor I have ever met in my life. Everyone I have sent to her is just blown away by her. It's like you are working with a friend, not a doctor. I forwarded the email to her to set up the tests (or issue the prescriptions so I can set up the tests).

OK - ENOUGH WHINING - on to the fun stuff.

Potty training is going really well. Averaging 1 accident a day. Seems to be a poop issue. He doesn't want to poop in the potty but he has gotten much better about sitting on the potty for a spell. Yesterday, he had no accidents but we aren't sure if it's a Dylan didn't poop at all yesterday or a Dylan pooped on the potty and no one told us. Oh well, I asked the teacher to check w/the teacher who worked w/him yesterday and to just make a note as to whether or not he did. I don't want to end up with a backed up boy.

Maybe I should change the name to "Tales from the Potty"

We started potty training this weekend. Full force. Just pulled the band aid off and put him in big boy underpants on Saturday - no more pull ups (at least not during the day). It went well. Many lessons learned... such as...

The reason you put little boys into briefs instead of boxer briefs or boxers is because things fall out of boxers/boxer briefs as we learned when Dylan, who was playing in his yelled "Mommy! Poopy!" We ran upstairs expecting to help him on the potty. Instead we found poopy.... all over the floor! Apparently, he had an accident and it fell right out.

We asked him what happened and he said... "Mommy, poopy fall out of my tushy!" He seemed almost surprised by it.

This is going to take a while isn't it?

Bang A Gong

Dylan has been fancying himself to be the next Ringo. He insists on bringing his drumsticks into the car where he proceeds to clap them together and then drum on the seat in front of him. He's not half bad either (for a 3 1/2 year old).

He's changing day cares to one near our home. We are very excited as it's a Jewish day care center so he'll be getting a Jewish education and there is a big focus on fun and physical energy at this school which is something he really needs. He'll also be going to a local school for speech therapy which is great.

I can't believe he's almost 4 years old. Where does the time go??

Hurray!

I got an appointment with one of the country's leading mastocytosis physicians. Dr. Castell in Boston. It sucks but there aren't many doctors who seem to really know and treat this disease. I have been trying to wrap my head around it but the second I think I have a handle on it - something new appears on my computer screen.

I know, I know, I need to step away from the googling. I can't help it. I need to understand what is going on. I had a horrible reaction to anchovies the other night (at least I think it was the anchovies). Then I had a horrible reaction to the horrible reaction. My body was actually vibrating. I thought I was crazy but then I posted it on my listserv and I got a bunch of people saying "oh yeah, that happens to me too". Worse part, it's not the first time it's happened either.

I want to see this doctor so I can find out how I can stay healthy. People who have the advanced systemic mastocytosis are so very very sick. I have indolent systemic mastocytosis so my goal in seeing Dr. Castell is to ensure that I remain indolent. Hopefully her answer is better than my doctor's which was.... "some people stay indolent their whole lives with very few flairs while other people go from indolent to advanced. There is no rhyme or reason to it... it just happens".

Bullshit. I don't believe that. There has to be a way for me to stay healthy whether it's eating or avoiding certain foods, taking meds, exercising etc. Whatever it is - if it means I'll stay healthy... I'll do it.

The Kindness of Strangers

It never ceases to amaze me... the kindness of strangers.

Since receiving my diagnosis of systemic mastocytosis, I have, of course, sought out every source of information I could find. Unfortunately, there aren't many of them. I have found two groups on facebook with absolutely lovely people who have been more than willing to not only answer my questions... but answer them honestly. I have also signed up for two listservs and while I don't participate greatly with them, I read the compassion they have for each other and it warms my heart. Especially after having such negative feelings towards the "Big List" as the Guatemalan adoption listserv is/was known.

Today was my first day back to the gym. I feel the need to be kind to myself and this is one of the ways I like to show myself kindness. By giving my body the exercise it so desperately needs. I haven't worked out in a few months for fear of causing a reaction.

Now, being in the fitness business, I know the owner of my gym. However, I still think he would react the same to any member. I explained my situation and told him I'd be bringing my epi pen with me... just in case.

First, he was so very happy to see me back. A number of people mentioned they had missed me which felt so good! I gave him the bag w/my epi kit and told him I had an emergency card in the kit w/my allergies, condition, etc.

He took it upon himself to go online, pull up a video on how to administer an epi pen and had his staff watch the video. He was very discrete and let his staff know to keep an eye on me. I genuinely felt safe while I was working out. It was great and I did a half an hour on the eliptical which is pretty good considering I hadn't worked out in several months. I also pre-medicated which appears to have helped with the hives so a good experience across the board!

The Bad Wife

I feel like such a shit. It's Marc's Mom's birthday today. We were supposed to go over tomorrow night for a party. She's been sick all week with a fever and stomach stuff. Well, he just called me. Tomorrow night is cancelled and him and his brother thought it would be nice to bring over Chinese food (I really have to avoid MSG) and hang out.

He's picking me up, dropping me off at home and going back into town w/Dylan. I haven't been sleeping well... ok, I never sleep well but it's been bad lately and I don't know if it's the stress of this masto shit or if it's the masto. I just feel beat up today.

Marc undersatnds but I still fee like a shit.

I can't think of a catchy title

Brain fog has taken over. I'm totally overwhelmed by this entire thing. I think I have a handle on it one second and then it's lost by conflicting information I find. I spoke with my doctor yesterday. She wants me to see a specialist in Boston and also wants me to registered at the NIH for trials (not happening).

I ordered my MedicAlert charm and a bracelet from Lauren's Hope. They have pretty chains for medical bracelets and if I have to wear one of those suckers - I want it to be pretty damn it! I like the MedicAlert system. I gave them all of my information (and I mean ALL of my information) and they have it in their database. Gd forbid something were to happen to me and I was alone, they would contact Marc. They have a list of my meds which is growing daily - so far we have H1 & H2 inhibitors, an antihistamine nasal spray, wellbutrin and the occassional klonopin thrown in for bad days. I also carry an epi pen and we may be adding a mast cell stabilizer to the mix too. They also have the name of my doctors and also my insurance info. Pretty cool.

I wish I understood this disease more. It's the not knowing that's driving me nuts!

Test was done.

The test was done on Tuesday and I have to say - all things considered - it wasn't that bad. For any of you who may be on the National Bone Marrow Registry having a biopsy is really not that bad. I'd rather have that than another HsG ~shudder~.

Hopefully I'll have some answers in the next day or two. In the meantime, for your viewing pleasure, in case you've ever wondered what kind of instruments are used in a bone marrow biopsy.....

Basically, they give you lots of local (which was the worse part), they do a 1/16 of an inch incision, then they use the big thingie to get down to the bone and then they use the metal thing w/the top to it to drill into the bone then they suck up the marrow through the tube. I swear, when he was aspirating the marrow - it felt like it was coming up through my toes, through my leg and out my hip.

All in all, I've been a bit sore. Nothing terrible. It's definitely subsided today. So here's to hoping. The doctor doesn't think it's leukemia or even systemic mastocytosis but, after he saw my legs, agreed it could be cutaneous.

I'm bouncing off the walls today

I have been up since 3:00 a.m. On top of being apprehensive about my appointment with the hematologist today, I'm getting sick. I have a raging sore throat and I'm congested. Hopefully, whatever needs to be done today won't have to be put off because of this. I don't know how much more waiting my brain can take.

Missing old friends

Kim Kim & Wessel - are you lovelies still around? How are you?

What does all of this mean??

I'm so lost right now. This disease... this mastocytosis... what the fuck is it? So far all I know is I get hives, have anxiety, am a lousey sleeper, have a tryptase level of 70 and now... a N-methylhistamine level of 267 (normal is 30-200).

I'm healthy. I have a few minor symptoms. I haven't shocked (anaphalaxis) except for one episode where I may have shocked in 97 or 96. I've had some weird stomach things about 10 years back that could be masto or could be a virus.

Shit, now that I am obsessing about this... I had a weird thing about 15 years ago where I couldn't eat much and dropped like 50lbs. Stomach issue or masto? Your guess is as good as mine.

What I can't figure out is this.... am I sick? Seriously. I'm in pretty good shape. I normally spin 3x a week (stopped because the heat rashes me up and I'm trying to avoid known triggers), my cardiologist wishes all her patients had a heart like mine. My dad's pulmonologist says my lungs are strong. My biggest medical issue to date has been infertility.

I read stories. Stories of people who "shock" every 3-6 months without warning. Their blood pressure drops and wham, they're out. They've spent years trying to figure this shit out after suffering horrible illness. Me? I have hives. Pain in the ass yes, life threatening no. But was there a time... a time when their lives were like mine with just small little symptoms that were just irritating? Did I just get lucky to find an allergist who has knowledge of mast cell diseases and this is where I'm heading???

I have a girl's night out scheduled for Saturday. I'm a bit concerned about driving up there myself. At least now I understand the pre-cursors, etc so if I start feeling oogie, I know to get off the road and call for help. Still....

Marc has his Valentine's Day gift orders (we normally don't get gifts but)... as soon as we have a definate diagnosis.... we'll get me a pretty medilert bracelet.

Today was rough. Mom called to tell me my father's brother was dying. I wasn't close to him. In fact I was quite angry that when my mother called to tell him his brother had passed, all he could talk about was his medical shit. Well, I guess his shit was pretty bad too cause he has stomach cancer and hospice is being called in. I cried a lot today. Not so much for him (although no one should die that death) but more for his sons. I know that pain. The pain of losing a parent. It just brought it all up again. I was at work, not in a "safe" place. Shove shove shove the emotions down, get through my meeting, get through a few calls when my insides said, sorry - no more room in here and threw the emotions back up along with a nice hivey rash on my upper arms and a full out panic attack. One H1 and one h2 inhibitor along with half a klonopin and some deep breathing exercises I came back from a close call with my epi pen (much to the dismay of my coworker who is dying to stab me with it).

The though of going to work tomorrow is just hard for me right now. Part of me feels like I need a few days in bed just being alone to get this all straight but I know that that is definitely not the right path for me. I have 6 days till my appointment. 6 days till I can get some answers as to what this thing called mastocytosis means. It's going to be a looooonnnngggg 6 days.

Happy Valentine's Day

A happy Valentine's day to everyone still hanging around this silly blog. I had such a wonderful weekend.

Marc had Dylan "sign" my card. On the envelope Dylan drew a picture of me, Marc, Dylan, the cats with a circle around me which represented him hugging me. I had Dylan do the same on Marc's card. It was too cute. Marc made me dinner after Dylan was in bed. We just sat in the dining room, lit some candles and had a nice romantic dinner. We just talked, ate and drank the night away. When we were done we both said "we need to do this more often".

Dylan's day care was closed today so yesterday he went to Bubbe's house for the evening. Two of his cousins found out and insisted they had to go too. My Mom said that the kids were great with Dylan and enjoyed taking care of him. Even the little one who is 6 months older was careful with him which is very sweet.

While Dylan was with Bubbe, we took advantage of the grown up time and went out for a nice dinner. I had a bit of a reaction to something. I'm hoping it wasn't the seafood - part of me thinks it was psychosomatic but I took a benedryl just in case.

Today my Mom took them to the local aquarium on my pass. They all had a great time. My Mom called and sounded so exhausted! Happy but exhausted. Now he's at my sisters hanging out till we get there.

Probably one of the dumbest things I've said in a while

But I think I'd rather deal with IF than this stupid mastocytosis. With IF, I could say to my fellow suffers... "My FsH shot up to 35" and they would understand exactly what I'm talking about. In IF, the medicine makes sense to me. In masto - it makes no sense to me whatsoever... at least not yet anyway and it's driving me mad!

It seems like this is a relatively "new" disease so I don't know that there is any set protocol in dealing with it. It seems that many of these sufferers just go into anaphalactic shock at the drop of a hat. In fact, that's how they discovered they had the disease. That scares the shit out of me. I've made sure that the people who sit near me during the day know how to use my epi pen and where I keep it but what if I'm alone or worse, alone with Dylan? I don't EVEN want to think about it.

Another thing that worries me about this is that there doesn't seem to be specialists for this disease except the ones who first identified it (and who are not in my area). I'm spoiled. I see specialists.

Gotta love those "aha!" moments.

So, being the super-hypochondriac I am, I have been researching the hell out of mastocytosis. I've found a few blogs (which I need to add to my bloglines) and just reading some of their reactions as it related to this disease has given me some "aha" moments.

TMI warning - Like the time I was so sick I was vomiting and suffering horrific diarrhea (at the same time), severe flushing, back pain, fainting. Yes, I know it could have been a virus - but it also could have been a histamine load - it happened to me 2x.

Also, another masto sufferer mentions that she believes her masto was triggered after a reaction to an antibiotic. I had a horrible reaction to cephlesporin. Now I'm trying to remember if I had this issue with hives prior to that reaction. I really don't think I did.

In case you haven't figured it out - I'm a little freaked out by all of this. I'm given bits and pieces of info but no where to plug it in so it can make sense. I'm actually looking forward to talking to the hematologist.

Craziness

Blogging has definitely fell by the wayside as parenting has become my #1 priority. I do miss it and I think I'm going to try to start things up again. So let's see.... The kittens are great! It's the first time I've had cats that had claws (both Shadow & Saffie had come to me declawed... front and back) and I have to say that we've had very few problems (except for when they try to climb up Marc). I swear Buttercup (gray) is Shadow reincarnated. She is, by far, the sweetest little thing you've ever seen and I walked into the living room one day to find Dylan with his head resting on her belly watching TV. Wesley has very little patience for Dylan. Dylan is doing incredibly well. He has a bit of a delay with his speech but we are in the process of getting his IEP set up so within the next few months - he'll be getting all the help he needs. It's been an overwhelming process for us but we're just taking things one step at a time. Me? Doing well except for one leetle thing. For the past ten to fifteen years, I'd get these random hives. Around the time this all started, I noticed that I had developed spots that look like freckles on my thighs. I pointed it out to a dermatologist once... jackass told me it was fat deposits. Well, it looks like I may have mastocystosis which is a rare disease where your body produces too many mast cell. From everything I've read, it's not a big deal. I have a 24 hour urinalysis to do on Sunday, drop it off Monday, then hopefully we'll know for sure and go from there. If anyone who may be reading this (Gd bless you if you do) and has any knowledge of this disease, feel free to chime in.

A new additions to the family!

Easy there folks - it's not what you think :)

After losing Shadow this summer, we decided no more pets for a while. Then we went to Colorado to visit Marc's family for Thanksgiving. His Dad has two wonderful dogs, a cat and a visiting cat. Dylan was in heaven! Played with the cats and dogs almost non-stop. One morning, on the cats decided to wake us both up for a snuggle at 6:00 a.m. Marc looked at me and said "you're going to think I'm crazy but...." I laughed and said "I miss it too".

Introducing the newest additions to our family... Buttercup (gray) and Wesley (orange) who joined our family thanks to the rescue efforts of the Camden County SPCA..

Poop in the Potty - Poop goes in the potty!

I have no idea who's in this video on You Tube - I love the song and so does Dylan. Apparently it made an impact because when Marc and I were away this weekend we got a call from my Mom.... he pooped on the potty! I think we can officially say we are in full potty training mode :)

Saying Goodbye

Monday I went to Andrea's memorial. Just like Andrea, she planned the entire thing. It was beautiful.

Her husband Kelly spoke, her minister spoke, her children spoke, her eldest Alec played guitar and say "My Life" by the Beatles which absolutely killed me. One of her friends read a letter that Andrea had written for the occassion.

I hope, many many many years from now, when my time comes, I have enough time to be as prepared as Andrea was. I hope that I can face my death as bravely as she did.

Her death has brought me some peace with my father's death. I think she said it best when she said that the person who dies has it easy - it's the ones left behind that really have it hard. She's right.

The memorial brought up a lot of emotions about my father's death and my subsequent reunion with my brother (there are reunion stuff happening on Andrea'sside as well so I was really personalizing a lot of things). While I feel a bit ripped open, it's not necessarily in a bad way.

Get your babywearing gear here!

Win the Essential Babywearing Stash from Along for the Ride (one Beco Butterfly, one Hotsling baby pouch, one BabyHawk Mei Tai, one Zolowear Ring Sling, and one Gypsy Mama Wrap)

Rest in Peace Angel... Rest in Peace

Andrea Smith Punk Rock Mommy

By Michael Matza

Inquirer Staff Writer Andrea Collins Smith, 38, the "Punk Rock Mommy" whose online journal about her terminal illness was a heartbreaking yet uplifting fixture in cyberspace since her fateful diagnosis last year, died at her Fishtown home Saturday, just hours after her last blog posting.

"I am sure that some of you are profoundly saddened by my passing. Death is far more about the living than the dead," she wrote, opening herself for the final time to more than 70,000 monthly visitors to her Web site.

"But I believe in my whole heart that this is what was meant to be for us all. . . . I pray that none of you will ever get cancer, it sucks. But if you do or someone you love does I pray some of my words are a comfort to you all. Have a wonderful life. I will have a wonderful afterlife."

Smith's husband, tattoo artist Kelly Smith, said his wife died at 10:30 a.m. Saturday after respiratory complications.

"Her spirit was so bright. She touched a lot of people in a lot of different circles," he said, citing her passions for church, the punk underground, and groups concerned with maternal and child health.

"She really was the star of her show," said her friend Amy McConnell. "Everyone, it seemed, waited with bated breath to see what was going on with her life."

Avid followers certainly knew.

"I feel my body rushing toward death. New growths in my neck. New pain," she wrote on July 1. "And I no longer pray for more time. I really want to be in Heaven now. ASAP."

In May 2007, two days after graduating with a psychology degree from Temple University and two days before Mother's Day, the hipster mother of six whose tattoos and piercings were too many to count learned she had inflammatory breast cancer, a fast-spreading, generally incurable form of the disease.

Rallying around their stricken friend, the region's rockers, artists and self-styled outcasts turned out in force, cooking, cleaning, holding fund-raisers, and driving her to medical appointments.

Smith, whose life force never failed to register on people who met her, was widely known in the punk-grunge subculture anchored on South Street.

She liked to say she once held "the trifecta of cool jobs" - clerk at Zipperhead, waitress at Sugar Mom's, and office manager at the School of Rock, where students 9 to 17, including several of her own kids, learn to perform hot licks.

A parishioner at Kensington's Circle of Hope Church, Smith always prayed. After her diagnosis, she said last December, she had some "funny" conversations with God.

"I'm a mother. I just graduated from college. Now I have terminal cancer. I thought you wanted more from me. Besides, it's very cliched. Very Lifetime television," she said she told God.

On a serious note, she said, she came to understand that everyone's "life is very short. None of us knows how long we have . . ..

"You can sit around and wonder, 'Why me? Why me?' " she said in an interview with The Inquirer. "But do you ask yourself that when good things happen?"

Raised in Fort Lauderdale, Fla., Smith moved to Philadelphia with her mother and sister when she was 17 and immediately fell in with the punk and new-wave scene.

In 1989, she married musician Tony "Jeeter" Collins. A year later, their son Alec was born. Then came Jesse, now 16; the twins, Asa and Tucker, now 14; and Bailey, now 11, the couple's only girl. They divorced in 2000.

Four years later, she married Smith. Twenty months ago their son, Clay, was born. Persistent soreness that developed during breast-feeding led to the discovery of her cancer.

She began the Web site - www.punkrockmommy.org - to keep family and friends apprised of her condition, but it quickly grew, acquiring an international following.

A memorial service for Smith will be held at 9:30 a.m. Monday at New Life Philadelphia Presbyterian Church, 425 E. Roosevelt Blvd.

3 Years!

Three years ago today I wrote this post. Three years ago today we received our referral of our son, Dylan. He was 2 days old.

I can't believe it's been three years (2 1/2 that he's been with us). He is the most amazing child you have ever met. His smile will melt the hardest of hearts. His spirit is wild and adventurous. His speech is coming along nicely although him repeating our random "shit! fuck! etc." we could live without.

But I can't let this day or his birthday go by without acknowledging his first mother. Both Sunday and today I felt her in my heart, tugging. I can't help but wonder what she does on his birthday and on the anniversary of her relinquishment. I say prayers for her and hope that she reaches out to us one day. If not, I hope that if Dylan ever wants to find her, that her door is open to him.