Feeling 100% Overwhelmed

iVillage Member
Registered: 11-06-2012
Feeling 100% Overwhelmed
4
Tue, 11-06-2012 - 2:47pm

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 for day to day. 

iVillage Member
Registered: 02-17-2004
Wed, 11-07-2012 - 1:30pm

Huge hugs.  This is a really tough time right now.  It will get better.

I just lost a huge post to you, so let me see if I can think of it all again.

As for organization, you will want a journal to record good/desired behavior and bad/odd behavior.  Record the date, time of day, what the behavior is, what stimuli is in the room (smells, lighting, sounds, people in the room, etc.), how long the behavior lasts, and what ended it.  You want to see triggers, frequencies, duration, and how it ends.  You will begin to see patterns in about 2 weeks.  This will help YOU the most to help your DS to handle difficult situations.  Take this with you on evaluations.  You will never remember all the information required on all those forms.  This will help.

Make photocopies of EVERYTHING you sign, fill out, and receive.  Write notes of phone calls.  You are emotional right now, you can't rely on memory.  Have it so you can go back and review as needed.

Get a calendar.  Put down all the appointments, all therapy sessions, all commitments your DS already (like soccer practice).  Plan everything you know out as far as you know.  A paper calendar works best for me as I tend to delete electronic calendars accidently on a regular basis.

Make sure all information comes to you.  You need to be the central point.  You are the boss of this team.  You interview those working with your son.  If someone is not a good fit for the team, find another.

As for the team, it sounds like you have quite a bit going on.  Be very careful about double evals.  Some evals done more than once a year will have invalid results.  For example, if you do a test, then do it again within a year, the child may remember aspects of the test and result in a higher testing score even though improvement may not have occurred.  Before anyone tests DS, ask what specific test they are going to do, what information they seek, and if one of the tests he has already taken will answer the questions.  Make SURE you have written copies of all testing results so you can photocopy and send as needed.  Due to privacy laws, agencies do not share testing results.

Have goals identified from each eval.  There should be 6 month goals and long term goals.  Keep these in the calendar (central location).

As for who does evals, this stuff is a mess.  At least my experience was.  Make sure a sensory OT is present.  When you have a really bright boy, he can fall through the cracks depending on how the system is set up.  A sensory OT will pick up on handwriting, sensory, anxiety type things which may be in play instead of cognitive things.  Make sure you have a sensory OT though.  Not all are and your DS sounds like he may have either some sensory things in play or some anxiety.

Your developmental ped may talk about nutrition.  Nutrition is VERY important to our kids.  If you dev. ped does not talk nutrition (as in REALLY talk about nutrition), look for someone DAN certified.  My DS is tested regularly via bloodwork to make sure iron, vit D, vit Bs, creatine, and carnatine are all good.

Look up vision therapy for later down the road.  I think 3 is too young for this, but it may come into play around age 5.  Read it so you know about it and can watch to see if it becomes relevant.

A good read to get your feet on the ground - Sensational Kids by Lucy Jane Miller.  Another good one is Asperger Syndrome & Your Child by Michael D Powers with Janet Poland.  Both should be in the library.

If you have any questions, feel free to come back.  The beginning is the toughest time.  It does get better really soon.

Karen

iVillage Member
Registered: 02-17-2004
Wed, 11-07-2012 - 1:40pm

With as long as that post was, can you believe I forgot to mention?

Forgot to mention...

Really smart kids know something is up.  I told DS that he was so smart, I was bragging on him and wanted to see just how smart he was.  I told him he would be asked 2 year old questions all way to 8 year old questions.  So some of the questions would be really easy and some he would not know.  He was not expected to know 8 year old questions.  If he knew anything above (insert current age) that is just extra good stuff.  DS seemed to buy this line and cooperated very well as he was showing off.  To this day, he has no clue he is behind on anything developmentally.

Any therapy was presented as play time and playdates with the therapist.  We never said therapy in front of him.  We'd say it was time to play with Ms. Sophie (made up name for example purposes).

Be prepared emotionally to undergo testing once a year for a while.  We would 'graduate' for a little while then go back at the time for a few months after the following eval.  DS turns 6 soon, we were diagnosed at age 3.  I try to line up all evals within the same month so we are the same age with everything we are working on.  It makes for a rough month, but all our milestones are for the same timeframe.

Karen

iVillage Member
Registered: 11-06-2012
Thu, 11-08-2012 - 3:07pm

Thank you thank you thank you!

This has all been so overwhelming, and your advice is really helpful, especially regarding keeping a journal of behaviors, triggers, outcomes, etc. I hadn't even thought about that.

I'm at work at the moment; sorry for the short response, but I want you to know it was very helpful!

iVillage Member
Registered: 02-17-2004
Thu, 11-08-2012 - 8:44pm

Good.  I'm glad it will help.  You will get a system down soon.  It does takes some time to adjust to all this though.  You will make some mistakes.  Chalk it up to learning and don't waste time to dwell.

The journal will be the most help for YOU.  Once you learn what triggers bad behavior, you will be able to prepare you son.  For example, my DS is sensitive to loud sounds - even the toilet flushing.  So before we flush, we tell him, we are flushing the potty.  He would get his headphones on, then say ready.  Then we'd flush.  After he learned that the noise would not hurt him, then he used the headphones less and less.  But we had to address the stress associated with the surprise of the noise.  Also knowing this, we had to avoid public bathrooms for a while (auto flushers and air driers - UGH!).  As we addressed this sound issue, his anxiety decreased around the sounds (he knew he could use the headphones if needed).  The surprise was his headbanging also decreased.  He felt more in control.  So it's good all around.

The journal will also help you identify when your DS is happiest.  If DS has a bad or stressful day, you can redirect him to a happy activity to destress.  This will help tremendously with behavior.

Finding the right team and getting through the initial hoops is very time consuming and flat out confusing.  Hang in there.  Ask any questions you may have.

Karen