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Autism Family

Susan Swanger Zipf

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Hey. I'm struggling right now with three autistic boys.
Matthew is 17. At 14, he finished middle school but could not go to high school. He went on a tour of it, and it was just too much. There are over 1000 kids there, and there was one hallway that he said was "just bad. Really bad." So we tried to home school him He has severe, out of control panic attacks, and is hard to help, being over a foot taller than me. We haven't really done a lot of school work because of his panic attacks. He has recently acquired a terrible fear of going out of the house. He won't even walk the dog sometimes.

Connor and David are almost 13. (Yes, twins. God DOES have a sense of humor).
Connor has autism and Central Auditory Processing Disorder. His two brain hemispheres don't communicate very well. He is in 6th grade, and they've put him in a cubby with no visual or auditory noise, and he does the entire days' schoolwork in three hours. But he has to wear headphones.

David is the younger twin. He is very emotional. He only has "markers" for autism. But he also has major depression - like, suicidal depression. He also began having seizures, which were a blessing in disguise. His neurologist thought it odd that out of four boys, (I have a married 27 yr old as well), three have autism. So he did a micro-array test - tool 14 vials of blood from the poor child. Thank God none of my kids are scared of needles.

Anyway, this test showed that he was missing 248 unit wide section of one of his 22nd Chromosome. This happens to be a section they have mapped. People missing this part either have major depression, autism, or schizophrenia. They tested me, and I have the same thing. It explains why I've been depressed since before kindergarten.

Anyway, that's what I'm dealing with. (Plus a totally disabled husband!!)

Any pointers would be helpful.
 

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Susan, welcome to the forums! Can see why you wrote "struggling right now." That's a tremendous amount but you're already acutely aware of that fact. Don't know if these would be considered pointers.

One of our neighbors had an autistic son. Even though his mom worked with him for untold hours and he was aware of lots of things, his communication skills were very limited. She was able to get out of the house daily for a few minutes. Hope you're able to get a break too.

They learned that whatever food he craved was what he didn't need to eat. They had padlocks on bread and other grains as well as caffeine items (kept the keys on their person). Also, he would stay in the shower as long as they would allow. Because of his reaction to the shower, they were able to get a pool which worked miracles.

When Matthew says something is bad, when he is calmer, does exposure help to ease the anxiety or does he consistently refuse to engage in that activity like walking down a hallway or a particular hallway?

Seems like Connor can do his schoolwork as long as distractions are eliminated? Does that apply to other activities like playing games?

Is David able to communicate experiencing pain like when he accidentally cuts his finger?

Will pray for you and your family often.
 
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Susan Swanger Zipf

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Susan, welcome to the forums! Can see why you wrote "struggling right now." That's a tremendous amount but you're already acutely aware of that fact. Don't know if these would be considered pointers.

One of our neighbors had an autistic son. Even though his mom worked with him for untold hours and he was aware of lots of things, his communication skills were very limited. She was able to get out of the house daily for a few minutes. Hope you're able to get a break too.

They learned that whatever food he craved was what he didn't need to eat. They had padlocks on bread and other grains as well as caffeine items (kept the keys on their person). Also, he would stay in the shower as long as they would allow. Because of his reaction to the shower, they were able to get a pool which worked miracles.

When Matthew says something is bad, when he is calmer, does exposure help to ease the anxiety or does he consistently refuse to engage in that activity like walking down a hallway or a particular hallway?
No, when he's called something bad, it's bad pretty much for a very long time, if not forever. While he has been able to overcome some of his fears (water, thunder and spiders), he has developed the much stronger one - agoraphobia. He's afraid to go out of the house.

Seems like Connor can do his schoolwork as long as distractions are eliminated? Does that apply to other activities like playing games?
He can sit on video games forever. He loves watching funny youtube videos. I'm afraid they've shoved him into a corner and it's kept him quiet, but he's not learning anything. Yesterday, he INSISTED that his computerized math class was messed up. He said, "I keep getting 12 x 12, and I've put 24 in there a dozen times, and it keeps telling me it's wrong." This is 6th grade - he should understand multiplication by now.

Is David able to communicate experiencing pain like when he accidentally cuts his finger?

Will pray for you and your family often.
Yes, he can communicate pain. But it seldom bothers him. He says, "I cut my finger." But there's no fear and little pain in his answers. He even broke his foot once. He cried for maybe 10 minutes. Meanwhile, his whole foot turned a horrible shade of purple/black.

I really appreciate your prayers. I need them. My husband had his 35th stroke last week. He completely recovered from most of them, so it's not as bad as it sounds. But he also has 0 kidney function, and is on dialysis at home.

I'm just so tired of being tired.
 
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*LILAC

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I wonder, are you receiving any extra assistance? Family? Friends? Community workers? Do you get any time for yourself?

My autistic son loooves his video games and youtube videos and movies as well! He also isn't very forthcoming about any pain he may be feeling. It's often a guessing game unless it's something VERY obvious. He's slowly coming around to tell us about it but does not like to be asked. If I ask him if he has a headache, his answer is usually "no, I'm fine" but if I put an ibuprofen in front of him, he takes it without question.

My son also has/had a fear of thunderstorms. We keep telling him God is in control and he is going to be A-OK! We also bought a CD with thunderstorms playing on it and noticed it helped... maybe even too much because now he wants to be outside into the storm! I do believe prayer does help and we have to keep encouragements up even though they try our patience to the point of exhaustion. I will pray for you and yours.
 
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fragilewingz

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Hey. I'm struggling right now with three autistic boys.
Matthew is 17. At 14, he finished middle school but could not go to high school. He went on a tour of it, and it was just too much. There are over 1000 kids there, and there was one hallway that he said was "just bad. Really bad." So we tried to home school him He has severe, out of control panic attacks, and is hard to help, being over a foot taller than me. We haven't really done a lot of school work because of his panic attacks. He has recently acquired a terrible fear of going out of the house. He won't even walk the dog sometimes.

Connor and David are almost 13. (Yes, twins. God DOES have a sense of humor).
Connor has autism and Central Auditory Processing Disorder. His two brain hemispheres don't communicate very well. He is in 6th grade, and they've put him in a cubby with no visual or auditory noise, and he does the entire days' schoolwork in three hours. But he has to wear headphones.

David is the younger twin. He is very emotional. He only has "markers" for autism. But he also has major depression - like, suicidal depression. He also began having seizures, which were a blessing in disguise. His neurologist thought it odd that out of four boys, (I have a married 27 yr old as well), three have autism. So he did a micro-array test - tool 14 vials of blood from the poor child. Thank God none of my kids are scared of needles.

Anyway, this test showed that he was missing 248 unit wide section of one of his 22nd Chromosome. This happens to be a section they have mapped. People missing this part either have major depression, autism, or schizophrenia. They tested me, and I have the same thing. It explains why I've been depressed since before kindergarten.

Anyway, that's what I'm dealing with. (Plus a totally disabled husband!!)

Any pointers would be helpful.
i am truly. sorry for your situation. my family is in the same boat : 18 yr old autistic bipolar brother with PTSD, OCD, and a whole lot of other disorders... and my dad is half paralyzed. and i'm. a single mom.
i'm sorry i don't have any idea how to help with your situation, other than include u in my prayers. 3 autistic boys and a disabled husband... God is merciful. He will provide all that you need. your strength will be renewed daily and His love will. keep your family whole... i truly. hope you will be able to see all this through. GODBLESS U AND YOUR FAMILY.

p.s, If u want someone to talk to, just pm me. it's tough what you're going through. i know it all too well.
 
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makeajoyfulnoise100

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Be appreciative of the diagnosis! Thank God you have this diagnosis at a young age because I was diagnosed two years ago and am still trying to find ways to cope with my autism. My brother and mother are undiagnosed and still live with it.

I encourage you to encourage them with their talents.
 
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