Friday, December 17, 2010

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?







Wednesday, December 08, 2010

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.

Thursday, December 02, 2010

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.

Wednesday, December 01, 2010

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.

Friday, November 26, 2010

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.

Wednesday, November 24, 2010

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.

Tuesday, November 16, 2010

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?

Thursday, November 11, 2010

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.

Thursday, November 04, 2010

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.




Thursday, October 28, 2010

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?

Monday, October 25, 2010

Friday, October 22, 2010

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.

Thursday, October 21, 2010

!#$@#@! 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.

Monday, October 11, 2010

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". 

Thursday, October 07, 2010

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

Tuesday, October 05, 2010

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.

Monday, October 04, 2010

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.


Wednesday, September 29, 2010

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!

Thursday, September 23, 2010

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.

Thursday, September 16, 2010

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.

Tuesday, September 14, 2010

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???