People Who Have Loved Ones With Autism And Other Disabilities

1. 55

   mours sshieldsposted 12 years ago

   We have a 17-year-old son with severe autism. I have worked with him for many years, with various therapies. Some of these are ABA, Options, and fast-prompting. He now is getting professionals who provide the ABA. Also, music therapy and social-skills training.
   We had to fight for a long-time to get ABA professionals to work with our son.
   However, he has made a great deal of improovement!
   I would love to hear from anyone dealing with a loved-ones disability!!

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   1. 61

      cobrienposted 12 years agoin reply to this

      I have a 19 year old son with autism and schizoeffective disorder and the work is overwhelming.
      As for early intervention services, My son's pediatrician noticed problems in him at the age of six months. Within a month, my son was getting physical and occupational therapy. At 18 months, he started speech therapy and a special class for five hours a day.
      I'm not really sure what ABA is. Robert is mildly autistic, and most of the problems we are experiencing as a family are associated with Robert's schizoeffective disorder.

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      1. 55

         mours sshieldsposted 12 years agoin reply to this

         Hi! It was nice to hear from you. When my son was first diagnosed, it seems
         like I felt so alone. However, I soon learned that there are a a lot of kids
         diagnosed with autism spectrum disorder as well as other disabilities.
         That's good, though, that your doctor noticed problems so early. Also, that
         you were able to get him into a class for 5 hours a day, at the age of 18
         months!! Wow!! We weren't able to get our son into a special class until he
         was 3 years of age. However, I know that different states have different
         programs and different laws. We're from Indiana.
         Our son wasn't diagnosed until he was 3-years-old. I'm happy to hear that
         certain professionals have started making a push toward a lot earlier diag-
         noses.
         ABA stands for Applied Behavior Analysis. I didn't hear about this until about a month or so after our son was diagnosed. Our sister-in-law gave us
         a book called, "Let Me Hear Your Voice." It's a book about a family with 3
         children, and two of them are discovered to have autism. They discover
         ABA therapy and teach themselves the technique; and then they hire the
         therapists themselves. Of course, I got the impression that this family was
         a little wealthy. And, this therapy can be quite expensive, unfortunately!
         We tried it on our own for awhile. And, we hired therapists, for a short time,
         paying them far less than the going rate. Then, we ran out of money.
         I'm happy now that our insurance is paying for many hours of therapy. This
         is one of the therapies that has been known to bring some kids out of autism. However, most kids that do come out of it, therapy must be started
         early. Also, a lot of kids and people who come out of it are also more mildly
         affected. I wish our son had had more help earlier. But, unfortunately, it's
         taken a long time for the insurance company's to comply. However, our
         son has improoved a lot!
         ABA is where the therapist gives the autistic person many trials of learning
         something; and they divide it into several small steps. When the child or
         person gets it right, they are rewarded. There are also subsideraries of ABA, such as Verbal Behavior. This is where the autistic client has to re-
         spond with a word(s), a sign, or a picture. Our therapist's do a combination
         of the different types.
         I would highly recommend the book I mentioned. There's also a wealth of
         information on the internet and a lot of informative books, as well as educa-
         tional books on ABA.
         I've read some on schizophrenia and schizoeffective disorder. I'm sure
         this is a hard thing to deal with, depending on how seriously your son is
         affected. Our 7 1/2-year-old has had some behavioral problems, in the past,
         and was also thought to have some very mild autistic qualities. He also
         gets therapy, simply because he's on the spectrum. However, he has im-
         prooved a lot, especially with his behavior! It's been amazing, because he
         was a hard baby to deal with.
         Anyway, it was very nice to hear from you; and I hope that if you need more help, you'll be able to get it without much trouble.

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2. 83

   DonnaCosmatoposted 12 years ago

   My heart goes out to you, because it is hard enough to deal with whatever the special need is without having to fight the exhausting battles to get these individuals the help to which they are entitled. I'm not familiar with ABA, but if your battle is anything like what we are fighting just to get our autistic son an IEP, I'm filled with sympathy for you:) It's pretty hard for others to envision the amount of work and energy that just getting through a 24 hour cycle can be.

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   1. 55

      mours sshieldsposted 12 years agoin reply to this

      Hi! It was nice to hear from you. That's too bad that you've had trouble get-
      ting an iep for your son. I hope you've been able to have an advocate's
      help. We've had advocate's go into meetings before; and it helps! sometimes they can add things to the meeting to get teacher's to comply
      easier.
      We are fortunate that our son is pretty easy-going.ABA stands for Applied
      Behavior Analysis. It's where the therapist teaches skills, and they divide
      these skills into several parts. It may take many trials before the autistic
      person learns the skill; but each time they get it right, they are rewarded.
      There are subsidiaries to ABA, such as Verbal Behavior, where the student
      has to respond with a word(s), a sign, or a picture. Our son gets a combina-
      tion of methods.
      I never heard of ABA until about a month or so after our son was diagnosed. Our sister-in-law gave us a book titled, "Let Me Hear Your
      Voice." It's about a family with 3 kids, and two of them are found to have
      autism.The parent's discover ABA, learn the method themselves, and hire
      their own therapist's. Of course, ABA can be extremely expensive!!
      That's why I'm happy that some of these insurance companies are finally
      paying for ABA!!
      I don't know how old your son is; but I highly recommend ABA. Our son
      has improoved a lot! And, some have been known to recover from autism,
      like the true story in this book. However, most of then who do recover get
      extensive therapy early-on. And, some of them are only mildly affected.
      But, I don't give-up. Some people may think I'm crazy.
      Anyway, I hope and pray you get all the help you need, in a timely manner.

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3. 96

   leahleflerposted 12 years ago

   I've heard wonderful things about ABA therapy. Our son has a congenital hearing loss and some sensory processing/low tone issues, but isn't on the spectrum. He does have an IEP and special medical file (he's medically complex/no comprehensive diagnosis), though the special ed is primarily for the hearing loss and the accompanying language issues that come along with that.
   
   Our little guy (4 years old) has a moderately severe hearing loss and started receiving therapy through early intervention. His first speech therapist had no idea what to do with him, and tried to disqualify him from services at the age of six months - she said he was "age appropriate" for language at the age of six months! It was absolutely ridiculous, particularly since he had a progressive hearing loss at the time. We managed to find a speech language pathologist who had some experience with deaf children, and she is Nolan's therapist to this day. He also has a Teacher of the Deaf (TOD) who works with him on a weekly basis. We'll be adding OT to the schedule since he has very weak hands/can't do snaps or hold a crayon.
   
   The medical part is a bit crazy - urology, vision (amblyopia), gastrointestinal problems (including Barrett's Esophagus which is very, very rare in children), laryngomalacia (a floppy airway), etc. Not covered by an IEP but he misses a lot of school for appointments and surgeries.

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   1. 55

      mours sshieldsposted 12 years agoin reply to this

      Hi! It was nice to hear from you. I' like your comments regarding your son.
      I don't know about some of these therapists and their attitudes. It definitely
      seems that some are just simply more dedicated than others; and that's a shame. However, I'm glad that you found the speech language pathologist who works with him now. And, it's great that he has a teacher for the deaf, who helps him as well.
      I've heard a lot can be done with those with hearing challenges.
      
      Yes, it does seem like children and adults have to go through a lot of medical problems sometimes. But, it sounds like you have your son on a good track! Best wishes for him, you, and his other family as well!!

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4. 65

   PaulaHenry1posted 12 years ago

   My 4 year old has hypotonia, bowel obstructions and impactions, speech delay, physical delays and occupational delays.She has been to numerous doctors,has had horrible procedures conducted and we are still no where further than we were. She is negative for Angelman Syndrome but is now being tested for Myotonic Atrophy and Spinal Muscular Atrophy. Both of which her prognosis would not be good. Insurance is giving me grief about coverage. They state they will pay for the lab but not the oourier to get the blood to the lab...Well, I live in MN and they need to send it to GA? Why? No answers.I am happy to say that she can now walk up the stairs one leg at a time while holding onto the rail and she is making slow but sure progress at therapies 2x a week.
   They have thought of Autism, Aspergers, ect but of course no testing has been done. There are so many spectrums of Autism that I really think they are overlooking the obvious.

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   1. 96

      leahleflerposted 12 years agoin reply to this

      Dealing with complex issues without a comprehensive diagnosis can be really tough. Have they done a muscle biopsy? I'm on a forum of parents with undiagnosed kiddos with complex health issues, and there are a few kiddos who had CIPO (intestinal pseudo-obstructions) and a couple had muscle biopsies with electron chain transport to check for mitochondrial disease.
      
      Nolan has motility problems as well - gastroparesis and esophageal motility issues - he's having a g-tube placed in March along with a fundoplication and it is quite a stressful situation. The GI team is starting to look at the whole picture, though it can be quite a road and I'm not sure if we're ready to do a muscle biopsy yet.

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   2. 55

      mours sshieldsposted 12 years agoin reply to this

      Hi! I am responding to Paula Henry and leahlefler, since this sight won't let me respond to both of you separately. I am sorry to hear that your kids are having these problems. However, it's great leah, that you are on this
      forum. They say two heads are better than one. And, this is one way of finding some more answers.
      And, yes there are many different levels of autism. Our older son has severe autism, but yet they diagnosed our younger son as having some
      qualities of autism, that he might outgrow, which he seems to be doing.
      
      And, Paula, it's nice to hear that your daughter has made improovement.
      Persistent therapy can make a difference!
      And, yes, dealing with insurance companies can be a real headache. I am
      convinced that both our sons would have never gotten the ABA they needed, if it had not been for the ABA company's insurance specialist, tak-
      ing care of all the "dirty work" for us.
      Anyway, I wish you and your children all the best!!

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5. 60

   MakinBaconposted 12 years ago

   I have a son with cerebral palsy, and while he has moved into an assisted living home with other males in his age group, the memories of the times it was close to overwhelming is still vivid, when I think about it.
   
   Along with the physical issues of having to lift him (he couldn't walk), especially when he grew began to weigh more, he also, as with many others with cerebral palsy, had some emotional issues related to not being able to do things on his own, and having limited independence.
   
   Fortunately, he had scattered brain damage, which allowed him to be able to speak and understand things. Those with brain damage in a more centralized location would have lost that ability, and not been able to understand; or at best, only interact at a very rudimentary level.
   
   Bottom line is it was very tough, but those are the things in life that can make or break you, and fortunately my faith in Christ, support from my spouse, and being able to occasionally get some relief, helped us through.
   
   Even with all that, it's extraordinarily draining, and you have to live it in order to understand the toll it takes on someone.
   
   But there is positive in even these situations, and it offers us an opportunity to learn to selflessly give; not an easy lesson or practice to learn.

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   1. 55

      mours sshieldsposted 12 years agoin reply to this

      Hi! It was nice to hear from you. I'm a little familiar with cerebral palsy, especially since our son has and is going to school with students with CP. I know there are different levels of it, just like with autism.  Your son is
      fortunate that he can think and speak. That's a lot, right there.
      I know exactly what you are talking about, as far as the emotional toil goes.When our son was diagnosed with autism, it was absolutely devastating. In fact, I probably had a mild case of post-traumatic stress problems, after the diagnoses. But, the Lord and our family and friends
      
      brought us through. Especially the Lord and prayers!!! And, the changes
      all this has brought to my personality and character, I wouldn't trade for the world!

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