Childhood Apraxia and Autism Spectrum Disorder

Updated on December 13, 2013
K.T. asks from Universal City, TX
4 answers

My 2yr and 10 month old son was diagnosed with Autism Spectrum Disorder and Apraxia last month. He has been receiving ECI services for a year now. Speech for a year and Occupational Therapy about 6 months. I recently had to go to private Speech Therapy because ECI could only come out twice a month for 1 hour each and now he is receiving it twice a week for 30 minutes each. I am going to switch to private for occupational as well because he is going to PPCD program with the school district in February. He also needs ABA but my insurance wont cover it and I have tried looking for everything that could be helpful to us but no luck yet. It is very difficult to pay out of pocket for us and very overwhelming . I don't know where to start with all my questions. Should I look for a speech therapist who specializes in Apraxia? What approach is best for children with Apraxia? Is in home better than taking him? How long should each therapy be for? Where can I find a great support group? Are there any suggestions/recommendation on where I could find great therapists? I'm just trying to give my child the best care I can find/provide but it is very hard when you have no family around or don't know anyone who is going or went through the same thing. I have looked up a million things online but feel like I am at a dead end. He was diagnosed by Autism Community Network.

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M.S.

answers from Portland on

I am glad that you are doing so much for your son, and got him diagnosed early. Our little one is 2 years, 7 months, and he was diagnosed in August with Austim, General Communicative Disorder, and Sensory Processing Disorder. Basically very similar to your son.

We are doing Occupational Therapy at a place called Sensory Kids. While I know they aren't in your area, the training they focus on is from the SPD foundation. Their website is www.spdfoundation.net. and they should be able to help you find someone trained in working with Autism and the SPD focus. Really, what it all comes down to is how to help the child with his proprioception (where his body is in space). There are OTs who specialize in Autism as well.

I am not sure where you should go for Speech. I have seen it done in several different ways. I recommend that you find someone who focuses on Autism. This is a special way to do speech, where the therapist follows the lead of the child and doesn't make the child follow the therapist. We had one who was wonderful and when my guy wanted to run, she ran with him and taught him to say "go guy" when he ran and then she taught him stop when he came to the other wall in her office. She had been trained to work with kids with autism; she moved to another city, so we were automatically given the other speech guy. He did not work this way. He would spend at least 10-15 minutes of our 25 min session making the baby look at him, and then making him say what he wanted or he couldn't do that activity or the toy. This meant that the whole time except for maybe 5 minutes was my son screaming and crying because he was so unhappy. This was before he was diagnosed with more than a speech delay and SPD. When he was diagnosed with autism, they recommended that we use one of their speech therapists, and she works with him much like the first lady we loved did. I don't know that she is making as much progress as the first lady, but she is making way more than the second guy.

I don't know where you had your little one diagnosed, but if it was a Child development center then they should have therapists specially trained for autism and speech. I looked up Apraxia, and basically, it is what any speech therapist is trained in. The kicker is the autism piece that goes along with it. We are using the Providence Neurological disorder child development center here in Portland, and it is a wonderful and special place. I would try to find something like it in your area.

Another thing I would really like to mention is a massage practice called Qigong (Chee gong). We were able to get my son into a study being led by the lady who wrote the book, Dr. Louisa Silva, and it has made so much difference him that I can't believe it isn't a standard part of treatment! I don't know if you can do the study because it is so far away, but you can buy the book which comes with a DVD that tells you how to do it and even gives examples of what it looks like so you know if you are doing it correctly. I give him a massage every night and a professional from the study comes once a week. We have been doing this for 4 weeks now, and he is talking nonstop, we can almost guess what he is saying, he is toe-walking less, he is using his hands more with less of the funny finger stuff that looks odd, and he even sleeps better. I can't say enough good stuff about this, and it takes less than 20 minutes a day, but I personally think it has made more improvement in his speech and ability to focus and engage than anything we have done, and he has been in therapy since he was 18 months... (http://www.amazon.com/Qigong-Massage-Your-Child-Autism/dp...)

I can't help with the ABA because our insurance won't pay for it either, and we just can't afford it. But, I am hopeful that his Disability from Social Security will come through soon so that we can use the money to pay for it. That is why I applied and decided to "label" him so early: to help him in anyway I can. We also have something called disability support services through the county, and they have helped with things like a weighted blanket, and will help pay for therapies when they have the money to do so. Funds are short everywhere as I'm sure you know, and insurance runs out.

Look into an early head start or preschool for your guy when he turns 3. ECI has a special school like this that our guy is slated to go into as soon as he turns 3 and it is all year round, so they don't have that break in the routine which can be so hard on them. As for in home or in clinic therapies, it just depends. OT should be there because they can set up the facility in ways that they can't in your home. Speech is done both ways for us, we take him in for private sessions and ECI comes to our house as well for speech, PT, and OT. I honestly haven't seen a whole lot of response to the ECI in our son, but it is a good builder for what is done in private sessions.

Oh, just an fyi, check with your insurance company about speech, because the first place we went billed for an hour, but only gave him 25 minutes, so he still got the same NUMBER of visits, but only half the time. The place we go now, bills for an hour and treats him for the standard 50 minutes, so he is getting 2x the therapy but the insurance is paying the same amount.

I hope this helps! If you need any more information, need help finding resources, etc. please pm me. I am so happy to help. Also, if you look at Autism Speaks, on their website is the first 100 days packet that you can print, or they will mail to you. Use this, especially the part about how to inform and let the emergency services know that you have an autistic child. We had a scare a couple of weeks ago when our guy climbed out of bed, undid the deadbolt, and ripped the slider lock out of the woodwork in the door jamb and went for a walk. A nice man found him about 3.5 blocks away thankfully, and called the police who found us and brought him home. (Yes, we are thankful for this in all ways!). The policeman did NOT understand that he was autistic and that he couldn't talk, and that we didn't know he could open regular doorknobs, he never had before, and didn't understand that he could actually pull the lock out of the wall. I didn't have that paper handy, and it would have saved us a lot of trouble! So, knowing that service people are not trained in autism or understanding it, please learn from my experiences and get the paper ready to hand them just in case. I didn't think we would need it until he got older, but nope, we needed it now. (We had all laid down to take a family nap because we were recuperating from a stomach bug, and he decided to only take 10 minutes instead of his normal 2 hours.)

Good luck, good job Mom for helping and doing what you need to for your son. Remember, Autistics are not broken or damaged, they are exactly the way they are supposed to be, they just aren't the "typical" kid.

2 moms found this helpful

J.S.

answers from Richland on

Who is diagnosing your son? Apraxia applies to the loss of the ability to speak while still having the desire and ability to speak. Your child is almost three there is no way there was meaningful speech to have lost.

Progressing normally then losing abilities is also normal for autism.

I find this diagnosis odd which is why I wonder who diagnosed your son. If it is not a psychiatrist or neurologist that is where you start. While they are properly diagnosing your son they can direct you to resources.

2 moms found this helpful
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P.G.

answers from Dallas on

Visit the blog - adiaryofamom.wordpress.com - they also have a support page and people try to answer questions for each other there. She also has a facebook page.

My son is 6, I found her page this year and it really helped my attitude, outlook, etc. She blogs from 2008 (diagnosis of her daughter) through to the current day. She has links to other mom blogs, links to autistic adult bloggers, resources, etc. It's great stuff.

Feel free to PM me if you want :)

Hugs~

2 moms found this helpful
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P.K.

answers from New York on

Autism Community Network diagnosed him? Is this a medical group of doctors who specialize in autism. Neurologist?

1 mom found this helpful
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