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My 5 has apraxia and autism. I just found out I have been way off in how I was doing his behavior therapy, we can not afford it regulat. we just got a schlar ship for monthly for 3 monthes to show us. But i knew how, it just slipped away. He is regressing agian. He's been diagonisied since 18 monthes. He has a good prognosis if he learns to talk and I stop being an idiot.
How do I learn to sleep at night. Am I doing therapy right? Am I finding the right therapy? How can we be low income, what are we missing for him becuase we can not afford it? are his siblings getting enought attetion? His brother has speech apraxia too. What if I don't spend enough time and neither one ends up not ever talking? What if me going to school part time to raise our income (an be a spl so I can help him and others more) takes away too much time. What am I missing for him? What if.....
Most of the time, well part of the time I can breathe and know all I can do is my best. But others I am exhausted and distraught. I know it is wrong to feel this way. I love him as he is. He is one of the greatest loves and light in my life. I don't want to change him only I feel like I must do everything..... I thought you guys might have some tips. He needs all of me, not and exhausted mom.
How do I learn to sleep at night. Am I doing therapy right? Am I finding the right therapy? How can we be low income, what are we missing for him becuase we can not afford it? are his siblings getting enought attetion? His brother has speech apraxia too. What if I don't spend enough time and neither one ends up not ever talking? What if me going to school part time to raise our income (an be a spl so I can help him and others more) takes away too much time. What am I missing for him? What if.....
Most of the time, well part of the time I can breathe and know all I can do is my best. But others I am exhausted and distraught. I know it is wrong to feel this way. I love him as he is. He is one of the greatest loves and light in my life. I don't want to change him only I feel like I must do everything..... I thought you guys might have some tips. He needs all of me, not and exhausted mom.
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Re: Don't take this wrong
Mon, October 1, 2007 - 9:41 AMFirst - stop being so hard on yourself.
You are doing the best you can, and that's ALL you can do. You and your family are all in this together and you sound like you are trying to take it all on yourself. Doing therapy "all wrong" is relative - some things will work for some kids, some other things will work for others, which is part of the insidious nature of autism. You are not an 'idiot' - you are in the same boat that we all are, trying to find a good balance between allowing your son to be himself and helping him gain the skills he will need to interact with the outside world, a tall order even for parents of "NT" children.
That being said, I can only speak from my experience in the State of Nevada regarding affordable therapy. We have been very fortunate with a state-sponsored early intervention program, where I was taught how to work with my son and he met with therapists about five times a week, and the school district took over with an ABA program when he turned three. All of these services were free, and, in the meantime, I was able to research support programs through private and public foundations and am currently working on applications for services from said programs. I guess my question to you would be - does your state have any such program? Has your son done and IEP through the school district, and, is there a program there that will meet his needs?
All of this is incredibly overwhelming, especially when you feel like you are going it alone. Most places have programs in place that are designed to help people in your situation. Since I don't know where you are, I can't tell you specifics, but you might start at your state Board of health care. Most people will sniff and say that those programs are not adequate, but hey, it's a start and you won't be trying to do it all by yourself. You might have a local support group, too, that you don't know about.
You have voiced things that have gone through my head as well, and I can only say that reaching out to local groups has helped me enormously. They won't have all the answers - no one does - but they can help you reach a peace with yourself and enough will to carry on. Your son will benefit more if you are not so overwrought. As you say, he needs you, and your entire family will be in a better place if you aren't constantly punishing yourself. Hang in there - this is a process, not a goal. -
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My Two Cents
Mon, October 1, 2007 - 11:45 PM>Doing therapy "all wrong" is relative<
If it causes harm to the child (physical harm being the most obvious), even if it seems to work, then it's all wrong. If a therapy seems to do absolutely nothing, though it does not cause any harm whatsoever, then at least it has that much going for it. Basic principle: do no harm. Even if you see Autistic children as untrained animals, the least those of us in the Autistic community can ask is that you'd give your Autistic child the same respect the law would demand for a family pet.
Falling A,
>Am I finding the right therapy?<
I have no idea. We can't possibly tell you that without knowing what therapy you're finding.
>How can we be low income, what are we missing for him becuase we can not afford it?<
A lot of the better stuff out there isn't all that expensive. In fact, charging straight through the nose can be, at best, a yellow light, if not a red one. I believe that the best treatment for developmentally disabled children in general is to get a group of them, depending on their age and the severity of their conditions, in the same room, and have them play together under the supervision of professionals. It may seem to be doing NOTHING at first; but in the long run, it did a hell of a lot of good for me, and besides, it's both nonviolent AND less expensive than the violent alternatives.
>are his siblings getting enought attetion?<
We don't know and shouldn't judge, though it's good that you're thinking of them.
>His brother has speech apraxia too. What if I don't spend enough time and neither one ends up not ever talking?<
Vocal speech is overrated. Trust me.
>What if me going to school part time to raise our income (an be a spl so I can help him and others more) takes away too much time. What am I missing for him?<
I doubt it. His Autism and speech apraxia will still be there when you get out of school. Oh, and so will he. -
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Re: My Two Cents
Mon, October 29, 2007 - 9:56 AMIt is good to know that I am not the only one. Thank you.
I know it does not do him any good. I wish I could go the the autism support group but the two year old makes it rough. :) I have better days.
I did not hurt him. I just let him slip away again and then could not get him "back" (he zones) the doctor did in like 5 seconds. He was in an autism preschool. He is past it. He is receiving speech 1 on 1 once a week and group 2. OT he gets the same. I take him to the apraxia clinic once a week. The state give us 212 a month the clinic eats up that. I am fighting the insurance to pay for that, he needs ot there too. They are helping with that (the clinic). I am in MI.
I have a scholarship for PLAY therapy which is working very well, but only for 3 visists. We will make the most of it. I have tried Easter Seals they to not even reply. I have too others I am going to contact. If you hear of any let me know. Maybe I need to move to Nevraska. Our district is better that most in Michigan.
Most days I am do not have such a hard time, just once in a while it over takes me. I have been told that even higher income people have trouble paying for these therapies.
I think it would be easier to accept if I thought it had to be that way, but I have this picture if I just stay upbeat enough, pray enough, do enough or the right thing he will be all he can and if I do not it is all on me. But like what was said I have to Let go. He needs all of me.
Thanks!
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