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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

Completely Overwhelmed

Posted by on Nov. 6, 2012 at 3:12 PM
  • 22 Replies

Our son, Henry, turns three in December.

We've noticed a lot of quirks with Henry over the past few years, and this summer, we started putting together some pieces. Henry marches to the beat of his own drum. He's a picky eater, he's terribly OCD in a lot of ways, and he doesn't talk as much as other kids his age. We kind of chalked it up to kids developing differently, and weren't all that concerned because he's so strong in other areas. He loves numbers, creates number patters, shapes patterns, counts forwards and backwards. He's also huge into words/letters. He spells at at least a Kindergarten / first grade level, and loves to read. 

But on thing I noticed this summer that didn't quite seem normal was what I call 'side-eyeing.' Just viewing lots of things out of the corner of his eye. Liking walking back and forth up the wall, looking at it out of the corner of his eye. He'll also sit on the ground, with, say, a belt or something, and just run it back and forth in front of his face and look at it out of the corner of his eye.  He'll also walk around and around the pool and do this.

I called our pediatrician, and she said that we could certainly bring him in, but that without seeing him, she recognizes that the 'side eye' thing isn't quite normal. She recommended that we call the Early Start program where we live (DC), which is funded by the city. They do evaluations, and can set up services.

The whole thing has been a nightmare. Henry had several evals... behavioral, cognitive, others, etc, and then we worked with them to set up an IFSP, which is like an IEP, but for younger kids. Further, they referred us to an actual developmental pediatrician for MORE evaluations to see if there is any sort of diagnosis. 

Couple that with the fact that in less than a month, he turns three years old. When he turns three, Early Start can't work with him any more, and all this gets transferred to DCPS. So now we have DCPS on our backs, because they need to complete THEIR evaluations for Henry so we can get services in place for him. We're only just getting services in place for Henry at this point with Early Start. 

I've missed a ton of work trying to get Henry to these evals (although one has been done at home), and the thought of going through these evals again is just overwhelming. We're also not finished the evals for the developmental pediatrician, and another round of evals for DCPS? I'm totally overwhelmed.

My question - 

How do you keep all this organized? And I mean that literally? I can't keep track of who is calling and emailing me from day to day. 

I'm so overwhelmed. 

by on Nov. 6, 2012 at 3:12 PM
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Replies (1-10):
beachbabies6
by Member on Nov. 6, 2012 at 4:07 PM
1 mom liked this

i have a calander that i carry with me and i have to write eveything down or i for get , good luck

saltycoqui
by on Nov. 6, 2012 at 4:36 PM
yes use a daily planner.
U can make one from any notebook and add some folders too for the papers that you will be getting.
Or u can also clear a drawer or box just for that stuff.


Quoting beachbabies6:

i have a calander that i carry with me and i have to write eveything down or i for get , good luck

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Basherte
by Silver Member on Nov. 6, 2012 at 5:29 PM
1 mom liked this

Get a notebook and write it down when anyone calls. Write down name of who is calling, the name of the company they are calling for, and what the call was about.

It will get easier once you get all of that done.Once you have a program set up for him it will get a little less crazy. Just a little less. Good luck with all of this. 
*hugs*

EDITED TO ADD THIS: Don't forget to mark down the date that they called and the time that you spoke to them. That way when something comes up... Like you remember something that was said but not all of the details you will be able to remind them of when it was said. Might jog their memory a bit. 

This also helps for bill collectors as well. Or any business type thing that you have to deal with . . . like bills. If you can tell them who called you or who you spoke to and the day and time that you spoke, it will help you. example: You called in about a problem with the bill, and so and so said that they would take care of it, but when you get your next bill you notice that so and so didn't take care of it. So you call back. You can then say so and so and I talked about this on blah date at blah blah time and so and so said that so and so would take care of it. I want it taken care of. < It will get so and so written up for not doing their job and should get blah blah taken care of immiediately. If not speak to a supervisor, then it will be taken care of.

BetsyAviator
by on Nov. 7, 2012 at 9:04 AM

Thanks. I'm already so disorganized to begin with. 


I'm also so frustrated that we're JUST getting his services set up, and since he's turning three in a month, we have to do ALL this over again.

JTMOM422
by Brenda on Nov. 7, 2012 at 11:52 AM

I have 2 binders that I put everything in. I have one just for ABA and the other for doctor notes and early intervention stuff.

autismmom13
by on Nov. 7, 2012 at 12:25 PM

My son did the side eye thing too.  We called it doing "perspective". At the time we lived in Southern Maryland.  We went through Kennedy Krieger. (Baltimore, Johns Hopkins) The wait took a bit to get in but then it moved quickly.  We saw Jessica Ditto and were very happy with her.  We also went once to Children's Hospital but learned after the appointment through my mother that the receptionists were making fun of the kids who had appointments so we didn't go back.

proudofwyatt
by on Nov. 7, 2012 at 1:02 PM

i have 3 words for you... DRY ERASE BOARD! ours has saved my sanity several times. i know it is extremely overwhelming, but just try to keep in mind why you are doing it all. for your son. he needs you, he can't do these things for himself. and in the end, you will be so glad you stuck it out. i hope things work out for you and your son.   good luck!!    ((hugs))

proudofwyatt
by on Nov. 7, 2012 at 1:04 PM

just a quick question... has anybody gotten an actual diagnosis for the side-looking? my son does this alot, he has an appt with a pedi opthomologist at the end of the month, but any info would be appreciated!!

lemonade1
by on Nov. 7, 2012 at 5:01 PM

Wow you used the words that we always use for my son - he marches to his own drum = thought it was an english thing.  Never had a problem with the eyes except he needed glasses as he is long sighted.  I have always made lists and kept a diary on laptop for his appointments, helps a lot.  But can I just add one thing Honey that I think we all should remember - we should give ourselves a break if we miss something now and then.  We cannot do it all, even if we feel we should.  I know I beat myself up over stuff but really my son is doing well and is happy so I give myself a pat on the back sometimes. 

emarin77
by Silver Member on Nov. 7, 2012 at 5:35 PM

Have your child see a psychologist either private or through your school district.  Some schools need you to go through their psychologist to receive school services.  Once child is diagnosed he can receive services his whole life.  I have never trusted Early Start services since services are such a short time.

To be organized I always have a calander and notepad at hand.  Write names of people, their phone #, and who they are (why are you and they are calling).

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