NOAH AOC

We had our intake session with Early Intervention today.  Braeden scored a 45% delay in physical development.  When I called to see if he qualified for services my biggest reason was because he wasn't sitting up unassisted for much time without tipping over.  Just this week he is now sitting and playing for 15-20 minutes at a time which is so awesome!  So I was suprised that even with accomplishing this milestone that he is still this much behind.   With that being said I think we will be asking for some physical therapy help to assist him in getting a little more up to speed.  Do any of you have any other suggestions? 

Do you have concerns based on what you are observing with your son, or are you concerned just based on the % delay that EI is giving you?  I don't personally have a lot of faith in their evaluations sometimes.  My oldest didn't qualify for the transition to the program for 3-6-year olds.  My son was considered delayed based on the fact that he wasn't potty-trained by three (which is fairly early for boys) and the fact that he wasn't afraid of strange children at the playground?!?!  I didn't argue with the evaluation because it allowed him to continue services, but the whole time my brain was screaming inside.  Kids all develop at their own speed, and if you are seeing continued improvement, you might not have reason to be concerned.  And congrats on the sitting up.  That always opens up so many doors for them.

Courtney

We used a basket with those gymni straps. atacched the straps to the sides of the basket and Andy could still hold the sides of the basket and play with the toys that are attached the the gymni straps. Once he is sitting up, you can buy a booster set and do the same thing.  The child sits in the boosterseats and plays with the toys. These were the pictures that I wanted to send you before. I also have pics of the black and yellow blanket with the contrasting toys in it. Some states have a Commission for the Blind, outr in NJ , send lots of free toys for the child to play with and stim off of them. Lots of lights and sounds to get the baby;s attention!

I had two concerns when I first called one of them was his not sitting up without tipping over and the other was the funny head tilt he had been doing for several weeks.  I was worried his neck muscles were getting weak on one side.  Well as I said he is now sitting just fine and the head tilt I discovered was because of a double ear infection that had failed to clear.  I think the one side was hurting him more than the other.  Otherwise, no I don't feel he is behind and the 45% delay suprised me.  His delay had to be 50% to qualify through Type II but he should qualify through Type I (diagnosed condition) if we want services.  They told me that I was in control of services - what I wanted to have help with.  Well, now I dont' really have anything that I think I need help with.  It is so frustrating trying to figure out what the best thing to do is.  I am leaning toward waiting to do anything until I meet with the vision outreach person the first week of April and go from there.  We'll see.

 If anyone has other suggestions based on your own experiences I would love to hear them!

 How old is your son?

He is just a little guy - 9 months old.

 The reason I asked is because Zach (6 years old with OCA) didn't sit up on his own until he was 9 months old.  I was freaking out and the doctor said that she would do a MRI/scan if he wasn't sitting up at 9 months.  Well, not only did he sit up, but he walked up steps, stood up in his crib and did some other major milestone ALL IN A 4 day span.  Of course, it was when my husband and I were away at our first NOAH conference and he was with grandma.

I worried and worried and it turned out to be nothing--just Zachary being his stubborn and independent self.  He does things ON HIS SCHEDULE--no one elses.  He had no other delays (except speech at 2, but not vision related--more "brother" related) and in fact, did other things ahead of his brother.

I began EI at 4 months old and stopped it at 1 year.  He didn't need it--I was wasting the VI teacher's time.  It was fine without the EI---there is nothing I missed by not having EI.  I know they told me he was delayed (at 4 months) but I would have to look with what.  By the way, I didn't really believe them--I think it was their way of getting him into the system so he could receive services from a VI teacher-which was my purpose at the time.  I think they wanted him to get services and then 6 months later determine if he really needed them--which he didn't.

Now in K, he only gets 30 minutes/week with the VI teacher and that is enough.  We always have the option of increasing the minutes if there is a need.  

Jo

I love your stories about Zach - they make me smile and feel much better!  I think alot of Braeden's (issues we'll call them) have more to do with his laid back personality and that he's just not in a big hurry - he's happy how things are.  He was rolling to get everywhere he wanted to go and now he's decided army crawling is better - its adorable.

In your opinion should I go ahead and establish services and then if we don't really need them fine?  Is it harder to do it later?  I want things to be as normal as possible but I don't want to overlook an opportunity either. 

 I would definitely get services now and see how it goes.  I enjoyed the VI teacher coming 1/month to just "talk".  She would tell me about her high school students with albinism and all the things they do in HS.  She was more of a "support system" for me at the time.  She would check Zach over, but really never did anything special--but again, he was fine.  I liked the program but after 6 months (and paying 30.00 per visit), I felt like he was fine and I could use that money for other things pertaining to his vision.  

I was put on "hold status" or something like that when Zach was 1 year old.  Basically, I could call them at any point and begin services again, but I never felt the need.  At 3 years old, he was offically dismissed from EI and went to preschool with an IEP.

I often tell people that Zach's disability is his attitude!  He is SO stubborn and independent.  From the beginning, he does things on his terms and just really has to "feel" like he made the choice to do whatever it is.  If you force him to do something, he will just fight you until the end.  Sometimes, we get into "control battles" and he just keeps going.   On the other hand, he is the most affectionate and loving little boy who loves hugs.  

Jo

Thank you for all of your advice - there is nothing like hearing things from someone who has walked the same path ahead of you!  Can I ask what Zach's uncorrectable vision is?  Has his nystagmus slowed or is about the same as it has always been?  I thought Braeden's had slowed down since he was first diagnosed but lately it seems to have ramped up again. 

By the way I love your post about Zach's presentation - I think it was a wonderful idea and I'm inclined to suggest something along the same line when Braeden does get into school.  Awesome job!

 At his last exam, he was about 20/100.  His left eye is much stronger than the right so his acuity is actually 20/60 in the left eye.  He holds a book very close to his face and sits about 5 feet away from the TV.  His nystagmus is moderate and certainly does speed up or slow down with certain activities.  I actually don't pay attention to it anymore unless I am looking right at him closely.  The PO always said it was "moderate" compared to other kids with nystagmus--meaning it could be better and it could be worse!  Zach has excellent functional vision and accommodates for himself nicely.  He really has learned ways to accommodate for himself.  I teach him techniques, but mostly he learns himself.  I noticed him accommodating himself at early as 18 months old.  

The nice thing about age 5,6 and up, is that they really begin to verbalize things quite well.  Zach can answer "What do you see" well and now verbalizes when he can't see things.  We have been working on advocating for himself and letting people know he needs something (to move to another seat, to sit closer, a bigger book etc... )  He has really progressed in the last 2 years with this concept and isn't embarrased or afraid to express "when something is too small". In my opinion, this was half the battle because I was "guessing" and hoping I was right.  Now, when we go somewhere, he picks the best seat or he moves his chair to see better.  He holds the book to read or he says I need help.  

He also uses a monocular quite well.  He plays the piano (I enlarge the music sheets) and swims well too.  By the way, he plays the Wii like a maniac!  He plays ping pong and baseball on the Wii VERY well.  When I look at how fast those balls are moving, I am shocked that he can see it and react so fast--but he does.  I think the Wii has helped his vision b/c he can play these sports and be close to the TV. The other day he was racing a car real fast and I actually was getting sick just watching him.  Yet, he was going around curves, up and down hills and everything.

Just another note:  Zach has the whitest hair.  He was clear blue eyes so he some pigment, but very little, yet his vision is pretty good.

Jo

I find it hard waiting to see what Braeden's uncorrectable vision is going to be.  I was told we would have a little better idea at his next appointment so I am interested to hear what the PO has to say then.  Aside from the nystagmus seeming to speed up lately he seems to be seeing things quite well, which I'm glad for.  Today our ped made a referral to the Genetics place here so we can explore a little further if Braeden only has OA or some form of OCA.  The report from our visit to Portland said it was one or the other and it does make a difference as far as implications for my daughters and their sons if it is OA vs. OCA.  Braeden has  good pigment.  He has light brown hair with a red hue and blue eyes with a small brown starburst in the center.  His coloring is very similar to his second oldest sister with the exception of the red hair - that is his alone!

My daughter is also 9 months and has OCA (my guess is type 1 because she has white hair). She started sitting up well only a few weeks ago. I think part of the reason it took her so long to sit up well is that she prefered to be on her tummy/back because she could get closer to things to see them better. It was almost like she had no desire to sit up. Each time I placed her in the sitting position she would arch her back or tumble over almost immediately. She wanted to be able to roll around. Once she had better control and could bend/lean to get something to bring it closer to her face she sat up better. 

Like you said, our EI caseworker has told me that we can request services whenever we want. We only receive vision therapy services right now. The VT comes out once a month and basically talks with me and plays with Caroline. She doesn't really do anything that I don't already do. But it is nice talking to her and she always comes with some piece of information or a little 'thing' to try. Since she only sees her once a month she is a little more objective on the progress Caroline is making.

We are going to have an OT eval done soon due to her lack of interest in food. I have been toying with request PT to help her with crawling, pulling up etc. But at 9 months she is still within the 'normal' range.

Anyway, just wanted to add that I know your concersns....

Hi, My name is Paula and Russell is 32 months old now. He did not sit at 6 months, we had our 1st visit w/ the PT and he started sitting, then there would be a concern about him feeding himself and in two weeks, no longer a problem, then he'd plaster his chin to his chest when we tried feeding and in a few weeks, no longer a problem, .... etc... no longer a problem.

We had a physical therapist to start, sort of had a vision girl/teacher..  , added an OT and developemental specialist (we really didn't have a vision therapist but the OT and DS both had interest in vision related delays so that is the biggest reason we had them), within about 3/4 months the PT only came out once every 3 or 4 months to just touch base. By the time he was 2, the OT and DS came once a month, we had a new vision teacher start in november who is WONDERFUL, and had the PT come back out because in jan the PO had 'concerns' about the 30% head tilt and neck muscles.. of course, the PT said... no problem - and we do some stretches/etc (like when we pull up from the changing table).

The evaluations should be taken with a grain of salt - like the atlantic ocean grain...  In PA, I was told just him having albinism automatically qualified him - presumtive eligability, so the 'delay' % really isn't a factor.  At his 2 yr evaluation his fine motor grasping skills he scored at 14 months instead of 26 months.... yet, you put a chocolate sprinkle on the table in front of him and ;pinch it - he'll do exactly the same thing... now for the second sprinkle, he'll just put his face to the table because now he knows it's chocolate...

It is very scary at first - the 'unknown' and we have much ahead but I'm now to the sortof scared sometimes.

Also, the yellow and black blanket that Jill mentioned.  Do you want one?  pztsbear@comcast.net

Raising a child w/albinism ... If you haven't - become a member of NOAH. ;)

Masking tape over a flashlight (one that makes noise too) and have him 'track' the light while on the changing table or the highchair...

Sunglasses outside, car window tint (I just put an extra film over the back windows - don't know if it's legal or not though) and pictures/etc on the back of the car seat. Balls that make noise, have lights, and roll slow.

I put window tint on the sliding door in the kitchen too... of course, now the boys just keep tearing it off, but it worked for a while.

Black contact paper cut into the shape of the top of the highchair tray - with cheerios/rice crispies - high contrast.

Sorry for rambling and paraphrasing - my brain is tired.

Keep smiling and let me know about the blanket,

Paula

Paula,  thank you for your stories and your exercise ideas.  Jill had mentioned the blanket to me before but I wonder if I will even be able to get Braeden to stay on it.  As soon as I put him down these days he is constantly on the move!  The high chair activities I think will work good especially as he begins tryng some finger foods.  I did give him his first biter biscuit this past weekend and he held it like a pro and had no problems with hand/eye/mouth coordination!  He did make a wonderful mess of himself though ;0) 

 Paula, does Russell have OA or some type of OCA?