Getting an evaluation?

[Jeeves]

My 11 yo was informally diagnosed by my sister, who is an OT/PT, with sensory processing issues when he was about 3 or 4 yo.  I have never gotten a formal diagnosis or done any formal therapy.  He doesn't have trouble all the time, but when he becomes frustrated, he often overreacts dramatically.  We have worked with him on how to calm himself down and how to recognize when he is becoming frustrated.  However, this past school year, it was really trying for us and I'm concerned about this upcoming school year. 

 

We did use the Diane Craft regimen of supplements after Christmas and that helped a ton.  But now that we're just having the 5HTP and pro-biotics (haven't had him on a multi-vitamin, but need to do that!), he seems a little on edge again. 

 

All that to say, is there a true benefit to having a formal evaluation?  Where would I go to get one (ps, pediatrician)? Also, we live in a fairly rural area, but are within an hour of a major metropolitan center.

 

Related to this, and part of the reason I'm asking this question, is that he struggles with writing--with pulling out the relevant facts, with coming up with a topic sentence, with seeing/understanding punctuation.  Would therapy help with this?  Or is that just for "life skills?"

 

 

[GoVanGogh]

Speaking from my own experience - I would get a formal OT evaluation.

 

I have read/heard mixed things about sensory processing issues - whether they stand alone or whether they are always seen in conjunction with something else.

 

In my child's case, his sensory issues (diagnosed at 2) are related to celebellum damage (from premature birth, but not diagnosed until much later.)

 

Also speaking from experience - our pediatrician was absolutely awful, refused to give us a referrel for evaluation until I insisted. As I was walking out of the office, he was still telling me I was wasting my time, there was nothing wrong, any mother would love to have my concerns. (We later ended up with a dozen diagnosis, each of which he should have caught!) 

 

Re: writing - it could just be a life skill issue that will resolve itself. But it can also be an indication that something more is going on.

 

Sensory issues can certainly affect writing -

the texture and feel of the pen/pencil across the paper

sense of balance may be off, which is causing him to focus on sitting up instead of writing

sense of place in space may be off, which is causing him to focus on where his arm is, where is hand is, where his pencil is, etc.

environmental factors may be overstimulating him, causing him focus issues

sensory issues can cause mental fatigue

 

It is really hard to tell w/o a formal eval, which is why I think they are so valuable.

[IsabelC]

It's difficult to tell how helpful any particular therapy or intervention might be, but generally it is useful to have a formal diagnosis so that you can at least look into what's available and possibly try some things out. It is probably worth getting a personal recommendation for a good pediatrician, then she/he can refer to for OT or whatever else you want to pursue. Just think of it as a fact finding mission - you are not obliged to follow any health professional's suggested course of action if you don't think it will benefit your son.

[geodob]

A major benefit of an evaluation, is that it can provide a deeper understanding of your sons difficulties.

Which would quite likely reduce your son's frustration, if he gained a real understanding of his problems.

Where a crucial element is to identify the underlying issue, so that the difficulties this causes with doing different things, can be understood.

This would also help you to identify what 'therapy' could actually be helpful.

 

Though the other side of it, is that it also provides an understanding of his ways of thinking and learning.

So that ways of thinking and learning that suit him can also be explored.

 

[GoVanGogh]

A major benefit of an evaluation, is that it can provide a deeper understanding of your sons difficulties.

Which would quite likely reduce your son's frustration, if he gained a real understanding of his problems.

Where a crucial element is to identify the underlying issue, so that the difficulties this causes with doing different things, can be understood.

This would also help you to identify what 'therapy' could actually be helpful.

 

Though the other side of it, is that it also provides an understanding of his ways of thinking and learning.

So that ways of thinking and learning that suit him can also be explored.

 

This really sums it up nicely.

 

To us, getting a formal diagnosis was devestating. But on the flip side, it has enabled us to finally understand our son and has been instrumental in knowing how best to educate him. When he gets frustrated with something in school, I can sit back and realize I need to approach it from a different angle. The diagnosis has been an important tool. Before it was like schooling with blinders on - I had an ideal of what his education should be, but I didn't fully know or appreciate his weaknessess so didn't take them into account.

[Jeeves]

This really sums it up nicely.

 

To us, getting a formal diagnosis was devestating. But on the flip side, it has enabled us to finally understand our son and has been instrumental in knowing how best to educate him. When he gets frustrated with something in school, I can sit back and realize I need to approach it from a different angle. The diagnosis has been an important tool. Before it was like schooling with blinders on - I had an ideal of what his education should be, but I didn't fully know or appreciate his weaknessess so didn't take them into account.

 

I think this is what I need to realize and I think it's why I needed to post something--I just need the encouragement that it WILL help to know and won't just be a label stuck on him that will make life even harder.

 

Thank you all for the push I needed! 

 

But now, here's the other part of the question--where do I go to get an eval?  I don't have any idea where to even start. Is it an OT I want to bring him to?  I just don't know.  Do I bring him to our family doctor first?  Do I access the public school system?  Any suggestions would be great!

[GoVanGogh]

I totally get the not wanting to slap a label on a child... But it isn't like you are slapping a label on for the sake of slapping a label on, if that makes sense. It is a tool to help you understand and teach your child.

My DH was very much against testing for quite a while, because of the label issue. But - teaching a child is a job. Can you imagine doing any job - from construction to lawyer - with only half the information? How could you do your best job possible if you didn't know a key piece of information?

To me, that was what getting the diagnosis meant - filling in those gaps that I just couldn't get a handle on... I knew something was 'off,' but what?

 

I would google "occupational therapist" along with your city information and see what comes up.

You could also call your doctor and ask for recommendations. (But I would not trust a doctor to judge what is going on - just my experience...)

 

Also - I was shocked at the price difference between facilities.

Our pediatrician referred us to a large facility linked to major hospital in area. It was nearly $300/hour. We started with them (not knowing difference), but - when we realized we were in for a long-term therapy situation - switched to a private therapy facility. They are $150/hour w/o insurance. (We are in an insurance nightmare right now.) I have since found a place that is $100/hour w/o insurance but hate to swtich again as we have been extremely happy where we are.

 

I would also go in very prepared - take samples across the subjects - math, writing, penmanship, art. Write up and print out concerns/issues, what you have done, what you feel like has worked vs didn't work, etc. It is better to go in too prepared... They will send you a form to fill out prior to evaluation, but still will ask a million questions about birth history, medical concerns, developmental milestones, etc. Look over pictures and videos and any records you may have... A key thing that keeps coming up with our son is that he settled on using his left hand at a very young age. I really have no clue when, but every picture from 15 months onward shows him using his left hand. I never knew then how important that little piece of information would now be.

 

(We expected our son to be dx with a learning difference. Instead he was dx with a physical disability, which was extremely shocking. We have been focused on his left hand all these years, since he has always used his left hand. In reality, the disability is in his right hand. Doctors now think DS is naturally right-handed, but he has always used left hand!)

[Jeeves]

That is so interesting about the physical disability!  I think that's a reason I need to have him checked--there's just something "off."  I've been lurking on this board for awhile, hoping to see something that would make it click for me, but I think it's just something I have to have somebody look at him and really figure him out.

 

My husband is finally on board, too--he was very cautious about the label idea, too (still is), but he understands that we need some answers.

 

And thanks for the idea to go in "overprepared."  I'll have to sit and think about it.  It really is hard to put my finger on it and hard to come up with examples and samples of what I'm talking about.  It's more behavioral than anything.  I think I've had a hard time with all of it because so often it looks like disobedience.  Sometimes it IS disobedience, but because of the "quirkiness" in other areas, (the overreaction/inappropriate reaction to new material, to forgetting things, to being touched, to being bugged), I think often it's not so much disobedience but an inability to put things in context.  Or maybe things really do seem that out-of-control to him that he has to react BIG.  I don't know.

 

Thank you so much for your thoughtful responses!

[Snow]

And thanks for the idea to go in "overprepared." I'll have to sit and think about it. It really is hard to put my finger on it and hard to come up with examples and samples of what I'm talking about. It's more behavioral than anything. I think I've had a hard time with all of it because so often it looks like disobedience. Sometimes it IS disobedience, but because of the "quirkiness" in other areas, (the overreaction/inappropriate reaction to new material, to forgetting things, to being touched, to being bugged), I think often it's not so much disobedience but an inability to put things in context. Or maybe things really do seem that out-of-control to him that he has to react BIG.

I could have written this! I am starting with ds's ped since he just had a birthday but if he doesnt suggest anything, there are a couple of major pediatric therapy services centers in my area that I will check out. Now, preparing examples? Tough. It's like you said, it's so hard to find the right examples that demonstrate the scope and severity of the problem.

 

Good luck to you.