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.