Afraid to pursue dx?

[Verity]

Hey all, I haven't been active lately and have honestly been dreading the start of this school year but I would appreciate a sounding board for this.

 

I've posted about my boys before and basically have taken a wait and see approach with the youngest but I would appreciate some fresh eyes and feedback.

 

Background:

I have three sons, 12, 9 and 5 years old. The older two attended ps for a few years. The oldest had lots of problems there but initial evaluations only dx'd severe ADD. I had him evaluated at age three by the local free screening for delays. He was found within the low end of normal. Even on medication (Concerta) school became progressively more difficult socially (bullying/teasing) and then academically due to executive function skill problems (couldn't keep organized) until I pulled him out to hs in beginning of 4th grade. Editted to add: oldest finally dx'd with Asperger's last fall through a local agency, confirmed what I had known for 6 years.

 

Middle son had communication problems - got tubes in his ears at age three (he tested to have expressive communication of a 9 month old at that point) and was placed in a special needs/language pre-k at the public school. He attended that school through 1st grade where he had an IEP for language and ADD and an aid in class. He wasn't reading well and his teachers seemed to think he was incapable of regular coursework. He is very socially aware and was playing them all. I realized that he wasn't being pushed to anywhere close to his potential and pulled him out. He now reads for pleasure and is doing grade level(ish) math work...still struggling with spelling words how he thinks they sound as well as reversing letters and numbers.

 

Both boys struggle with sensory issues and fine motor skill issues.

 

Along comes surprise baby #3 - he is more functional in many ways than his brothers were at his age but I don't think I have a good baseline comparison for "normal". At age five he struggles to dress himself, can't do zippers/buttons (admittedly I rarely dress him in those kinds of clothes because of our history of issues). He doesn't hold utensils well and is very messy while eating, prefers to feed himself with his fingers. He is very strong-willed, bossy and likes to get "physical" with his brothers, even though usually they don't want to wrestle - they aren't very physical.

Also his speech is hard to understand..about half the time I have to have him repeat himself at least once...sometimes I still don't understand him. I did have his hearing checked with he was about 3 years old and he tested out fine.

 

Part of me thinks that this is in the range of "normal" for a very boyish-boy who is used to having brothers talk for him, etc...that he hasn't been exposed to some things that would sharpen his skills because of being at home with mom for his whole life. I want to think that he will naturally gain skills and catch up in the next year or two.

 

I'm pretty scared about starting him in kindergarten this year. I considered trying ps so that I could have more time to spend focused on teaching the older boys but I just know that it would be more drama and difficulty. I'm fairly convinced that he would immediately tagged as ADD and maybe more.

 

We have only major medical insurance and that only offers a small percentage reduction in price. I can't afford expensive therapies and even expensive diagnosis is hard for us.

 

What I'm trying to decide is if I should pursue a diagnosis through the non-profit agency that dx'd my oldest with Aspergers (about $300) or if I should just wait and see, maybe most of his stuff is normal... I just don't know what would be served by having him evaluated.

 

Any words of advice? Having been through the ringer with my other sons I'm just mentally, emotionally and financially exhausted dealing with it all - the thought of going there again is more than I can take some days.

Thanks -

Edited August 10, 2011 by Verity

[Guest]

I'd say go for the diagnosis through whatever means you have. You are tired, you're under stress with two difficult kids already, homeschooling is hard (although tremendously rewarding) and gives you few breaks. Get at least one source of stress taken care of by finding out one way or the other, so that you KNOW, and at least don't have to spend mental and emotional energy with further wondering.

 

But even more importantly, the younger kids are when they're diagnosed on the spectrum (or indeed, with any type of neurological difference and/or glitch), the better for them. Many therapies work best on young kids; by the time kids are older (speaking from experience here) they are more resistant, and with some kids, their behaviors are also much, much more difficult to deal with and to change.

 

Just to give you a little nudge: my dd had the same problems with zippers, tying shoes, holding utensils (still does to some extent), using a pencil, eating neatly. From that and what you describe as your son's desire for rough physical contact, it sounds as though he's dealing at least in part with a sensory processing issue. OT can be tremendously helpful with that. Whether or not that is part of a larger package -- in dd's case, Asperger's -- I have no idea. But I'd certainly find out.

 

By the way, hooray for you for getting your middle child reading so well! And for having the courage and strength to bring your sons home from ps. Parents like you, and like all the women on this board, are my heroes.

[Verity]

I'd say go for the diagnosis through whatever means you have. You are tired, you're under stress with two difficult kids already, homeschooling is hard (although tremendously rewarding) and gives you few breaks. Get at least one source of stress taken care of by finding out one way or the other, so that you KNOW, and at least don't have to spend mental and emotional energy with further wondering.

 

But even more importantly, the younger kids are when they're diagnosed on the spectrum (or indeed, with any type of neurological difference and/or glitch), the better for them. Many therapies work best on young kids; by the time kids are older (speaking from experience here) they are more resistant, and with some kids, their behaviors are also much, much more difficult to deal with and to change.

 

Just to give you a little nudge: my dd had the same problems with zippers, tying shoes, holding utensils (still does to some extent), using a pencil, eating neatly. From that and what you describe as your son's desire for rough physical contact, it sounds as though he's dealing at least in part with a sensory processing issue. OT can be tremendously helpful with that. Whether or not that is part of a larger package -- in dd's case, Asperger's -- I have no idea. But I'd certainly find out.

 

By the way, hooray for you for getting your middle child reading so well! And for having the courage and strength to bring your sons home from ps. Parents like you, and like all the women on this board, are my heroes.

 

Thank you Karen Anne for your response. After posting I went back to add that my oldest son has Asperger's and had all of these kinds of issues as well - the youngest has the sensory stuff (while my middle is hypersensitive) but I don't see the social anxiety type of issues and inability to read facial expressions like I did with my oldest.

 

Regarding getting a dx for peace of mind - that is a very good argument. Re: therapies are more helpful the younger the child, truthfully I don't see how we could afford any therapy unless it was close to free. We filed bankruptcy earlier this year and are expecting to be foreclosed on in the near future. So, it's unlikely we can get any therapy.

 

My experience in this county is that once the child is older than 3 years they refer you to their pre-school half day with supposed therapies in class - however, the therapy is basically non-existant. It was more like bad daycare in my experience.

 

I have the form lying around somewhere to have him checked out at the non-prof clinic that did my older sons dx. /sigh

[Guest]

I am so, so sorry you are facing financial troubles on top of everything else! What a load to carry. :grouphug::grouphug:

 

One possible option is to find books like The Sensory Smart Child or The Out-Of-Sync Child at your local library, and use the activities recommended in those books, at home, with everyday objects. It's not ideal, as it puts yet more weight on you to plan and deal with this; but it's a plan of action.

 

There are also some really good web pages on sensory activities and fine motor skills, which recommend easy things you can do at home. Do a google search for OT, fine motor, sensory processing disorder, and you'll get a ton of information you can pick through to find what you think would work best for your son. Some of the older posts on this board regarding handwriting and dysgraphia have some great ideas to do at home to help strengthen the hands and improve control of fine motor actions.

 

Your library should also either have or be able to order some good books on Asperger's for you. There are specific books on dealing with Asperger's in school settings, which may give you some helpful ideas for academics.

 

Again, :grouphug::grouphug:

[gracyomalley]

:grouphug:

Another hug for your difficulties! I also agree that this sounds like sensory difficulties - and the related OT issues...which don't always go with other "diagnoses", but aren't just "boy problems". Does your school district not do any speech other than the special needs pre-school?, because sounds like your little one would qualify there too....

 

At least do some personal research on sensory integration and the like, as it may give you some practical ways to help him...

 

I, personally, wouldn't think about ps in this case, but then I can't imagine homeschooling 2 sn kids, then worrying about kinder in ps with a boy who will appear immature and have difficulty with many of the kinder skills - even if he's ready academically....I am, however, a bit "burned out" having had lots of patients brought to me for "add" workup just because they struggle with kinder...some small number who really have add, but lots with other issues the schools just can't deal with...so I am a big fan of homeschooling kids like you describe.

 

Anyhow, at 5, there are lots of sensory activities you can do on your own, and you can certainly alter "kinder" at home to limit writing, etc...he's still really young....but if there is any way to get some OT testing and therapy, and maybe speech, I'd look there...now, or later if able...

Erin

[Verity]

:grouphug:

I, personally, wouldn't think about ps in this case, but then I can't imagine homeschooling 2 sn kids, then worrying about kinder in ps with a boy who will appear immature and have difficulty with many of the kinder skills - even if he's ready academically....I am, however, a bit "burned out" having had lots of patients brought to me for "add" workup just because they struggle with kinder...some small number who really have add, but lots with other issues the schools just can't deal with...so I am a big fan of homeschooling kids like you describe.

 

 

Thanks - and the above is why I finally decided that I really had no choice but to hs. I have the Out of Sync child and OoSC at Play - so I will pull those out and look for more ideas.

 

It's all just really challenging, but it's good to see here that I'm not the only one hsing multiple sn kids.

Thanks all!

[Dobela]

One advantage of a diagnosis in our state is that with diagnosis of disability the child then qualifies for state funded insurance. We used it as our secondary insurance and it would cover therapy costs that our primary insurance did not pay. We do pay a small amount based on a sliding scale in premiums. It has been an absolute life saver for us financially.

 

 

Another advantage of diagnosis is that the child can begin understanding why those tasks are so difficult for them. And for you to teach.

[MerryAtHope]

 

Regarding getting a dx for peace of mind - that is a very good argument. Re: therapies are more helpful the younger the child, truthfully I don't see how we could afford any therapy unless it was close to free. We filed bankruptcy earlier this year and are expecting to be foreclosed on in the near future. So, it's unlikely we can get any therapy.

 

I still think it's worth pursuing the diagnosis. One...you don't know that you can't get therapy until you look into it. Two, even if you can't, if you know what the issues are, it will be easier for you to find which therapies are helpful through books and online sources so that you can provide it yourself. Sorry for all your struggles, :grouphug:. Merry

[PeterPan]

Verity, you need to get the evals, because the problems right now might not even be what you think. If he has oral tone or praxis affecting his speech, you want to go ahead and get those things identified and get working on them. (They don't go away.)

 

Waiting doesn't make it any better.

[Verity]

Thanks for the encouragement ladies. We are starting school in the morning (yes I should be in bed LOL but I'm setting up the table with the new notebooks to look nice) so I'm going to poke around and find the application for him to get an eval...at least I can know (more) what he is struggling with.

[Verity]

Well, looking back I can see that I spent the last few weeks of summer "break" actively avoiding thinking about "stuff" and that is obvious as the fear and feeling of being overwhelmed is evident in my last few threads. I'm feeling a bit better now that we have actually made it through two days of "half" school as we ease back into it.

Today I called a local Speech Pathologist and got some information about getting a better diagnosis than just ADHD for my middle son (he clearly has some kind of dyslexia, dysgraphia and visual/audio processing deficit) and I found the form for my younger son to get an evaluation for developmental delay from the place that helped with my oldest (Aspie).

 

So, onward and upward! I am not sure where we will get the funds but they are reasonable...roughly $400 and $300 for each child's evaluation and I think that it will be worth it to get a better handle on what they/we are dealing with.

 

Thank you all for your encouragement and support!!

[PeterPan]

Good job! Sounds great!