Advice regarding my son?

[Lots of boys]

Hi, my youngest ds is almost 5. He was diagnosed with Apraxia at 2.5 and also with global low tone (hypotonia) and likely global apraxia (very clumsy, difficult planning movements for his limbs) but we never got any formal diagnosis on this last one.

 

Here in Canada, he will age out of services for his speech at age 5 (very soon). After that point, he would either go on a 3 year waitlist through the school system (if we enrolled him - which we won't) or a three year community services waitlist (for kids not in school and anyone else) for speech services.

 

Due to the long waitlists, we will pursue speech therapy privately for him once he turns 5.

 

So here are my many questions and concerns. I will homeschool him but am very worried about how to help him most effectively. He has a very weak and poor pencil grip. He has trouble maintaining or holding a pencil for more than one or two strokes (his muscle tone is just too weak). He still isn't toilet trained (can't effectively get his bowel muscles to work for him on command). He stil has many speech issues - he is making great progress and is usually understood by others now, but he really struggles with r's, l's, and many blends. He also has some speech quirks like messing up most pronouns (refers to everyone as he or him). He also seems just young for his age. I don't really know how to describe this last one well, but his comprehension and understanding of topics seems behind his age.

 

So, I am nervious of our offical start of school. I am worried about teaching him and helping him and screwing things up for him. I know school would be a disaster for him but I think our family probably think he "needs" that extra help and the social environment (he is also socially behind and I worry he would be treated poorly by the other students).

 

Any advice from others on whether I need to pursue other testing for him at this point? He has really only been diagnosed with Apraxia and his Ped agreed back when he was 2 that he didn't have Autism - but that is all he has ever been looked at for. What programs or curriculum would you suggest as we begin K? Please reassure me that I can homeschool a wonderful little boy like him that has some delays! I am just so worried I won't be able to help him enough.

 

Thanks

 

P.S. I have been homeschooling his older brothers for the last two years and it is going well.

[PeterPan]

nt

[Lots of boys]

Can you get an OT eval? Sounds like you need to. Yes, you should pursue testing on all these things. It's not your imagination and they are concerns. Apraxia almost never occurs by itself. The sooner you get the right words, the better the information you're working with. Some things are delays, and some things are due to the low tone. The overall praxis could get therapy. There's also a book http://www.amazon.co...a,aps,187 that someone mentioned recently. But I'd definitely get the ball rolling on that OT eval.

 

Are you being careful what he eats? The low tone seems to result in a sluggish gut, meaning he's more prone to constipation. You can open his ileocecal valve with simple massage, just google to learn how. If you do that and feed him enough fruit and veges, the poop should fairly push out. He might actually be constipated. Eating fruit for all his snacks and eating salad for dinner will help.

 

I assume you also know about coconut milk, carnitine, flax/fish oil, etc.?

 

We use PROMPT for our speech therapy. If you can get it there, it's worth looking into.

 

How is AAR pre going? Is he hearing the rhyming? The sounds?

 

When they have speech problems, you really can't assume that what you're seeing externally is what's going on internally. My ds tests on the assessments our SLP just did as 95th-98th%-ile on preschool skills. His motor control is 75th%-ile (VMPAC). That's up from 50th%-ile a year ago, but it still means there's a HUGE gap between what we're getting and what is inside. I have no clue where your boy will be in that, but it's testing your SLP may be able to do for you.

 

Well he wants his school work now, so we're off. I just wanted to blast you a little something. You CAN do this. Yes he may have more going on, no it's not likely to be as easy as teaching a NT kid. But who else will care as much and be as thorough? On the social skills, we weave those into our speech therapy work. Try cooperative games. The Richard Scarry games (Busy Airport, BusyTown) are fabulous for this. I have a game with faces. You can get apps. Anything where you can build in turn-taking and your target social skills while using speech and his dominant learning modality (in my ds's case kinesthetic) is golden. Try to creating a language rich environment. I play audiobooks while my ds plays. It's just a passive way of getting more language into him when I can't be talking with him. The testing (preschool skills assessment) showed ds has off the charts auditory recall. I NEVER would have thought of that. Gives me something to harness. So see if your SLP can do some tests like that and give you some info to work with. The preschool skills assessment went into all the categories of language, etc. The VMPAC is different and looks at motor control, but as part of it it shows dominant learning modalities, which is very helpful too. I guess in retrospect it was obvious my boy was very kinesthetic, but I didn't realize it. If your boy is, you might toss ETC and go with more manipulatives. I use Jumbo Bananagrams with my ds.

 

Back to talk later! :)

 

 

Thanks for your response. He has been seen by an OT a few times but because they say he is functional (i.e. he can walk etc.) he is not a priority and so they don't see him on any pemanent basis. I love the book you recommended. I will pick it up and read. I would love to have a better idea of physical things we can work at from home. He is a very low energy kids. We still have to bring a stroller most places because walking more than a block is too tiring for him and he needs to sit down. When at home, he still sits in a W position (which we try to correct) or he lies down. He can't comfortably sit crossed legged or on his knees, he eventually slumps and falls over. Even at the dinner table, we have to give him the chair with arms on it (I think they are called the captains chair) so he won't fall out of his chair - he just forgets where he is in space and leans to far and falls out).

 

As far as his food. He loves fruits and meats and doesn't seem to be constipated. He has a bowel movement daily but often he will tell me he needs to be changed and when I go to change him, the poop isn't all the way out. He can't seem to contract his sphinkter muscle at all. He has always had some trouble knowing how to purposefully contract or release his muscles. Often even when he has to urinate, he will ask for a glass of water to drink which helps him release his urine. It is all jsut so hard to figure out how to help him.

 

I give him Omega suppliments daily and a multi vitatmin and that is it. I will research the other things you have mentinoed.

 

He is very ridgid about a lot of things so trying new thigns can be a challenge.

 

As far as school goes. He enjoyed AAR Pre-1 but struggled with the word games (rhyming). He is now great at identifying what sound a word begins with so we are making progress. We don't do a lot of the written work in ETC but do a lot verbally. I have AAR 1 but I don't think he is ready yet. He can remember large chunks of information that is concrete like flags of different countries but can't remember that you say "she" when speaking about a girl.

 

I am going to ask for another referral to a Ped (his last one recently left town) but I'm not sure what testing to ask for.

 

Thanks again for your help.

[VinNY]

Ditto on a PROMPT trained SLP also some DIY help below

 

Book recommendation:

http://www.amazon.com/Developmental-Dyspraxia-Identification-Intervention-Professionals/dp/1853469882

Helpful website:

http://www.ot-mom-learning-activities.com/

[Lots of boys]

A few years ago, I could have written this post. All the highlighted areas are the exact same issues that I saw in my son when he was five years old. (He's now nine.) After trying unsuccessfully to homeschool him when he was five, six, and seven, I pursued testing. (He had been in OT and ST since he was 18 months old.) I don't mean to alarm you, but our son was diagnosed with mild mental retardation. Judging from what you've written (especially the part about him seeming younger than his age), I would tend to think this *might* be what you're dealing with. I don't mean to be an armchair psychologist, so don't be alarmed at what I say. But I definitely think there's enough here to warrant getting a thorough neuropsychological evaluation done to see what's really going on. Your son sounds so very much like mine, especially at that age.

 

Hi, thanks for your post. I have always suspected my son has other issues other than Apraxia, but most times when I voice my concerns my Doc would say he is young, let's wait and see etc. etc.

 

Can I ask you what you meant by not successfully homeschooling him? Did you eventually send him to school? This is my big fear. I really don't want to send him to school but worry that I won't be able to access the services I need for him outside of school.

 

How did you get the diagnosis of "mild mental retardation" and from who?

 

How is your son doing now?

 

Thanks again.

[VinNY]

I am glad Kinsa chimed in...I was going to add more to my post,too but didn't. But now that she has stated more..my dtr (now 11) exhibited a lot of these issues too and my Dr. also told me she was immature and will catch up like the rest of my crew. In reality besides being apraxic of speech and body, ...it was determined through psychoeval that she has a low IQ 71. So obviously I was dealing with more than just "clumsy" issues. I would get your child fully evaluated and then make decisions from there.

 

I was able to get my dtr evaluated through the school system. They did a Psych, edsych, SLP and OT at age 5 years, 10 months. Prior to that she had a private SLP eval through insurance plan at 5 1/2. At 7 I had her eval for CAPD with a SLP/AUD expert. Then she was eval by a COVD at at 8. By 9, she was due for her 3 year follow up psych,Ed,SLP and OT eval through school district. IQ was still low, so a neuropsych read through all my testing and labelled her impaired.

 

I homeschooled my dtr until 4th grade. I was getting school based services (speech,OT and resource room for a number of years) and decided the constant running back and forth daily was disruptive for my other children. We all had a great relationship with these teachers and therapists so the transition was easy. She needed VT because even with an OG based program she wasn't reading. After that therapy and LiPS she started reading. I still work with her at home because she needs a lot of repetition but I appreciate the support I receive from the school.

[PeterPan]

nt

[Lots of boys]

That's very low tone. In the States they'd offer to send you to a neurologist who could look for the cause. There can be a mitochondrial disorder or other genetics they can identify.

 

His last Ped did have a CAT scan done and tested him for a few genetic things (Fragile X and MD) but everything came back normal. He does have a large head which concerend them and felt he did have very low tone but he compensates really well (he runs, plays, etc.). He is just really clumsy and tires really easily.

[PeterPan]

nt

[VinNY]

That's very low tone. In the States they'd offer to send you to a neurologist who could look for the cause. There can be a mitochondrial disorder or other genetics they can identify.

 

Yes good advice. Forgot to mention, my dtr was seen by a neurologist to rule out these issues,too.

[PeterPan]

nt

[Ottakee]

My thought was mitochondrial issues as well. I have 2 kids with those and 1 has 2 forms and the other has 3 forms. Lots of the same symptoms you are seeing.

 

have you seen a pediatric neurologist? That would be my first "go to" person.

[Lots of boys]

We have had some tests and a CAT scan and spoke to a Ped specialist two years ago but at the time I was so overwhelmed with all the information about aparaxia, I don't know that I remember much. I don't think they tested for mito disease but I am going to make an appointment with my doctor soon and have them go over all the info with me again. I will also ask about neuropsych testing.

 

Thanks for all of your advice. I really appreciate it :)

[PeterPan]

Let us know how it goes. :)

[PeterPan]

nt

[Lots of boys]

Well, I have an appointment with my Ped to discuss my concerns. I also contacted a Child Psychologist who specialises in Neuropsych assessments. These assessments aren't covered by insurance and apparently you don't need any referral here to go and see them. It will take a few months to get in (and about $2000) but at least we will get some answers. I will also ask my Ped about mito disease testing and find out if there is anythign else we should be looking at.

 

Thanks for the information about horses/riding. We have a place not to far from here that does does this type of therapy. I will look into it.

[Ottakee]

See if the ped will refer you to a pediatric neurologist. Mito testing and treatment is so new/cutting edge that it is highly unlikely that your ped is up to speed on all of it.