Children with autism

[Keylime359 2]

Our experience was much like Kim's time wise and all. Gabriella had therapy every day for years. It was a rough schedule, but today she is  in a mainstream school and makes the honor roll. However, for some the spectrum is different and all the therapy in the world won't pull them out. It just depends on the child and the part of the spectrum they are at. Gabriella is very , no VERY literal. It is black or it is white. If it is 8:59 and bedtime is 9:00 there will be no getting into bed at 8:59. Period. It is very annoying when mommy just wants to get her wine on.

  To your question magicbus, life is easier for her now that she is 13. I think it is part routine, part maturity and just accepting her and her abilities.

[ftwildernessguy 778]

Bipolar is a little different.  They have to have a psychotic episode before they can really start to be diagnosed, but the trick is limiting it to just the one.  Every episode they have sets them back a little bit.  Left untreated with multiple episodes, they will never function normally. 

[H in SC 85]

This thread is an encouragement to me, thanks for being frank open and honest.  H

[Keylime359 2]

It has been forever since I have had a chance to visit. So much has happened. We have been taking Gab to a neuro-psychologist. After a few visits he recommended we take her up to John Hopkins for new full on testing. We are on a waiting list to get in. I hope we can get in this summer before school starts. He said she is having brain seizures and that is causing the meltdowns. we put her on meds and they seem to be putting her on a more even keel. The best part is that since this is "mental" our insurance won't cover any of it. Each trip to the Dr. is $350 and I don't even want to think about John Hopkins. It does not matter she is my baby so I will pay it, but still that is a ton of money. have any of you had to deal with this?(insurance) Did you fight it? Her neuro Dr here locally is private and does not accept insurance at all so that is ruled out. I am hoping they will cover the big ticket items like the MRI and all of that. 5 days up there has ME twitching in a corner. I hope we get answers and have a plan and guidance going forward. Oh, and if any of you are around her please don't mention it to her as she is super sensitive.

[DaveInTN 3,247]

No telling what might work with your insurance company, but many times their willingness to pay stems directly from using the correct diagnosis code. They may not pay for "mental" diagnoses, but brain seizures could be considered a physical issue I would think...and maybe there is coding that would support payment for some of what you are paying, in particular the Johns Hopkins visit.

I will pray for Gab and you guys. I hope that the JH trip is fruitful. It sounds like you are making progress. Don't be a stranger around here! :hugs2:

[Keylime359 2]

great idea with the coding. I will ask them to look into it. The intake dept at JH was great they said they would try whatever they could. I hate that I don't have a lot of spare time to virtually visit. Between this md stuff and work I am going non stop. I sure am thankful we are busy with work however! From the looks of facebook it seems like Anna is adjusting well. How are her siblings doing with the change?

[Momoffive aka Loretta 34]

I agree the coding makes ALL the difference. Psychological, hard to put a true meaning or cause. Show them the medical proof i.e. seizure activity you have the "proof" that something "medical" is going on. It is terrible but that is how many insurances work. Once the diagnosis is made can you apply for one of the Medicaid programs available there? They are hard to get approval, but with persistence you may be able to get her qualified on the need bases. Again, if you ever need an ear to listen, just call!!

Loretta

[LORNADUCK 261]

For some reason today is the first day I have ever read this thread. I guess after meeting Gabe I wanted to find out some more about autism. My Son has ADHD and I had it easy compared to everyone else. I respect all the parents that have had to deal with this. After meeting Gabe I realize that the love these special children have is amazing, I know its tough for all of you, but you are all doing amazing jobs.

I know with my Son's ADHD we had him on meds when he was younger and it really worked, but as he got older they would not up the dosage of what he was on, they switched the meds and he hated them. He then refused to take them. His older Brother was also diagnosed with it and when he went on med (he is over 40) I was hoping he would tell his brother how great they worked, but he didn't like them and took himself off. He is a very sucessful developer in New York and has learned to work around it. My Son owns his own business and he is really good at what he does, but sometimes he needs to focus and doesn't yet have the maturity to do this. I hope it comes soon, because it drives me nuts. I shouldn't complain because it isn't half of what you all have to deal with. :heart:

[kampfirekim 260]

For some reason today is the first day I have ever read this thread. I guess after meeting Gabe I wanted to find out some more about autism. My Son has ADHD and I had it easy compared to everyone else. I respect all the parents that have had to deal with this. After meeting Gabe I realize that the love these special children have is amazing, I know its tough for all of you, but you are all doing amazing jobs.

I know with my Son's ADHD we had him on meds when he was younger and it really worked, but as he got older they would not up the dosage of what he was on, they switched the meds and he hated them. He then refused to take them. His older Brother was also diagnosed with it and when he went on med (he is over 40) I was hoping he would tell his brother how great they worked, but he didn't like them and took himself off. He is a very sucessful developer in New York and has learned to work around it. My Son owns his own business and he is really good at what he does, but sometimes he needs to focus and doesn't yet have the maturity to do this. I hope it comes soon, because it drives me nuts. I shouldn't complain because it isn't half of what you all have to deal with. :heart:

...and Gabe certainly LOVED you and Rich!!! :heart: Once of the major "symptoms" of autism is the inability to give and receive affection. We are so blessed that Gabe is very loving!!! ADHD can be almost as mind numbing as other more severe disorders. I know it wasn't easy for you. (I've met your son remember..) :rofl2: Just kidding Lorna! :)

Allison, I hope that all goes well for your daughter. I can't imagine what you're going through. Looking forward to meeting ya'll in a few weeks! :)

[Roberta 42]

Hello everyone! Who would have thought that my first post on a Disney forum would be about autism ... go figure.

My almost 22 year old son has Asperger's. He wasn't diagnosed until age 19. When he was little there was no internet and I had no way of knowing there were other kids out there like him. It would have HUGE difference in all of our lives had I had all the information then that I do now.

He had all the classic symptoms mentioned in this thread. He would only eat certain foods, loud/different noises or crowds sent him into a meltdown, he wouldn't wear clothes at home and only tag-free loose, soft clothing other times. He never understood body language, figures of speech, and had no social skills. Breaks in routine or anything out of the ordinary would cause crying and trantrums. He was in special ed but nobody ever really knew what was wrong with him. It helped due to the small class size and very specific directions on how to do things.

All his growing up years everyone just thought he was a spoiled brat (my parents included even though they didn't say it like that.) Nevermind that I had three other kids - two older and one younger - being raised by the same people in the same household that were perfectly normal and well behaved. I never knew what to do or how to handle things and I'm sure I made many mistakes. I had zero support system. Even my husband was unavailable (emotionally) and in denial.

So now, my son is nearly 22, he has his GED and is taking online classes. He went to actual college for a year but could not handle it. He has never been able to learn to drive. He's never had any kind of therapy or treatment since he was never diagnosed until he was an adult. Our insurance will not cover him and he can't get medicaid. We've tried to get disability for him with no success after many appeals. He has applied for many jobs but once there is an interview it's over. Everyone on earth, except social security, can see he is different and write him off.

It's really heart breaking. He gets depressed because he has no friends and is here at home all the time. He sees others, including his younger brother, moving on with their lives and he is just kind of stuck. I really don't know how to help him other than paying for his online classes so he has SOMETHING to strive for. As bad as things were when he was little, it was much better than where we are now.

So, I hope to get to know some of you on the forum. I have lots to talk about with camping and Disney. I've never stayed at FW, only the motels, but I've always wanted to and will someday soon, God willing.

[kampfirekim 260]

Glad to have you aboard MountainMama! Incidentally my first post on a Disney site was about Autism as well. Your story reminds me of a friend of mine. In fact they sound exactly the same. I dont' know why Aspergers doesn't get diagnosed as it should. My friend's son was not "officially" diagnosed but a doctor finally gave her some info on Asperger's when he was around 17 and asked her to read it and give her thoughts. She instantly knew the answer. Like you, she didn't have the services available to her to help her son but she did have understanding family. I can't imagine what you went through and are still going through with no support.

We are always here to listen, let you rant, offer advice... whatever you need to help make it a little easier. :heart: Of course, I'm sure you have plenty of advice to offer as well. I'm really glad you decided to sign on. Welcome! :welcome:

[H in SC 85]

Hello MountainMama, That screen name has such a familiar sound to it, as all of my family originated out of West Virginia. I also had a hard time accepting the fact that my beloved son, Gabe, has autism. As his father it is very difficult watching all of his sensory faculties stymied by autism, as if he lives in a perpetual fog and can’t quite break through. But he has, praise God, made progress and we are encouraged. Also fathers tend to not only think of our child’s current situation, but what is the outlook for tomorrow, five years, and ten years from now. As in our particular situation there is always something positive to focus on, and that is what we have to do. Find something that our son can excel at and gently redirect his energy and focus to those things. Baby steps are fine, its progress we’re after. May the LORD be your guide and strength. :D

[Roberta 42]

Thanks so much for the welcomes! Soon I will head over to the intro board and make a real introduction.

I am from WV ;D , that was a good guess considering there are many other mountains around. We moved down south four years ago and now live only 90 minutes from DW! We just got a new-to-us camper and hope to make a trip to the fort soon.

I do have the support of my parents now. Over the last few years they have finally come to accept that my son is disabled, not spoiled. I completely forgive them and we have a great relationship now. My husband is still in denial. My grown daughters are my best friends and offer lots of moral support. Most of all, I rely on God to guide us because I sure don't know what to do on my own.

I've noticed most of the parents on this board are still dealing with younger children. It gives me a great feeling to see these kids getting diagnosed and helped at early ages. And for the parents, being able to connect with other parents of disabled children is priceless!

[ftwildernessguy 778]

It must be our parent's generation that won't accept mental illness and thinks a good whack on the butt will cure anything, because my parents were the same way. To this day, I don't believe my mother truly thinks our daughter has a mental disorder.

[kampfirekim 260]

I cannot imagine how some of you deal with unsupportive relatives. I can't even think of one in our family. We've been blessed with understanding family. Even my 83 year old grandmother get it and is so patient... she requests prayer at her church for our son every week. Jim, a lot of people still think a spanking fixes everything. Sad. (I am not against them entirely, as a last resort of course.)

[ftwildernessguy 778]

The fact that Chris takes enough meds to knock a normal person on their ass and the effect on her is that she can now act and react normally means nothing to her grandma. She thinks she will just "grow out of it." Come on, grandma, she's 26 years old!

[kampfirekim 260]

The fact that Chris takes enough meds to knock a normal person on their ass and the effect on her is that she can now act and react normally means nothing to her grandma. She thinks she will just "grow out of it." Come on, grandma, she's 26 years old!

I know what you mean about the meds. If I took half of what Gabe does I'd be face down in the dirt somewhere.

[Keylime359 2]

Hello everyone! Who would have thought that my first post on a Disney forum would be about autism ... go figure.

My almost 22 year old son has Asperger's. He wasn't diagnosed until age 19. When he was little there was no internet and I had no way of knowing there were other kids out there like him. It would have HUGE difference in all of our lives had I had all the information then that I do now.

He had all the classic symptoms mentioned in this thread. He would only eat certain foods, loud/different noises or crowds sent him into a meltdown, he wouldn't wear clothes at home and only tag-free loose, soft clothing other times. He never understood body language, figures of speech, and had no social skills. Breaks in routine or anything out of the ordinary would cause crying and trantrums. He was in special ed but nobody ever really knew what was wrong with him. It helped due to the small class size and very specific directions on how to do things.

All his growing up years everyone just thought he was a spoiled brat (my parents included even though they didn't say it like that.) Nevermind that I had three other kids - two older and one younger - being raised by the same people in the same household that were perfectly normal and well behaved. I never knew what to do or how to handle things and I'm sure I made many mistakes. I had zero support system. Even my husband was unavailable (emotionally) and in denial.

So now, my son is nearly 22, he has his GED and is taking online classes. He went to actual college for a year but could not handle it. He has never been able to learn to drive. He's never had any kind of therapy or treatment since he was never diagnosed until he was an adult. Our insurance will not cover him and he can't get medicaid. We've tried to get disability for him with no success after many appeals. He has applied for many jobs but once there is an interview it's over. Everyone on earth, except social security, can see he is different and write him off.

It's really heart breaking. He gets depressed because he has no friends and is here at home all the time. He sees others, including his younger brother, moving on with their lives and he is just kind of stuck. I really don't know how to help him other than paying for his online classes so he has SOMETHING to strive for. As bad as things were when he was little, it was much better than where we are now.

So, I hope to get to know some of you on the forum. I have lots to talk about with camping and Disney. I've never stayed at FW, only the motels, but I've always wanted to and will someday soon, God willing.

you have a support system here :) welcome to FF

[Roberta 42]

you have a support system here :) welcome to FF

:heart: Thank you, that means a lot to me.

[DaveInTN 3,247]

From the looks of facebook it seems like Anna is adjusting well. How are her siblings doing with the change?

Anna is adjusting very well, and her sisters are doing great too! Our previous youngest, who is 5, has had the hardest time, but she's getting better with the changes each week.

MountainMama...welcome to the boards! Thank you for sharing your story with us, and allowing us to support you in any way we can. Of our 5 girls, two have what I would call "special needs". Our youngest, who we recently adopted, has Down Syndrome. And as developmentally limiting as that is, society (including family) understand it. People can grasp what it is, what is means, and are accepting of it. But our middle daughter has struggled her entire life with more obscure learning and developmental issues. She was diagnosed at an early age with sensory integration issues. More recently she was diagnosed with auditory processing disorder. She is enrolled in a special school that can adequately address her learning needs. But because her disabilities are not obvious, and not well understood, we have trouble with our parents and others regarding some of the decisions we make for her, or how we handle her at times. Ya just want to say "walk a mile in our shoes!". As parents, we are with our kids all the time. No one understands their needs like we do, and no one loves them like we do, with the exception of God! So to the other "well meaning" folks that don't get it; that say "oh they are just misbehaving...they'll grow out of it", I say "back off bucko!". "Your little Bobby and Susie may be perfect angels, are on the honor roll, and excelling at every sport there is, but my kid is perfection to me. So put that in your pipe and smoke it, you jackwagon!"

Sorry, guess I'm in a mood tonight. :rofl2:

[mouseketab.....Carol 1,261]

But our middle daughter has struggled her entire life with more obscure learning and developmental issues. She was diagnosed at an early age with sensory integration issues. More recently she was diagnosed with auditory processing disorder. She is enrolled in a special school that can adequately address her learning needs. But because her disabilities are not obvious, and not well understood, we have trouble with our parents and others regarding some of the decisions we make for her, or how we handle her at times.

Dave, I just want to say, the support and care your daughter must be getting is phenomenal, because up until this minute, I had no clue that she has any problems whatsoever!!! Every time I've spoken with her and seen her with your family and other fiends, she has been delightful!!!!

[Roberta 42]

But because her disabilities are not obvious, and not well understood, we have trouble with our parents and others regarding some of the decisions we make for her, or how we handle her at times.

Thanks for your support! You hit the nail on the head here, I've dealt with that all my son's life.

[Xforce 0]

This poem was passed onto us soon after our son was diagnosed with PDD NOS and its ment a lot to us. I`ve passed it on to many people now facing challenges with special needs kids, it helps put everything into perspective and for us helps us when we get down.

Welcome to Holland

[DaveInTN 3,247]

This poem was passed onto us soon after our son was diagnosed with PDD NOS and its ment a lot to us. I`ve passed it on to many people now facing challenges with special needs kids, it helps put everything into perspective and for us helps us when we get down.

Welcome to Holland

That is a great read. Thank you for sharing!

[kampfirekim 260]

The Welcome to Holland poem started a breakthrough in a thread at the "place that shall not be named". It really touched the hearts of all of us on that thread..... then someone posted this, which for all intents and purposes, hits much closer to home for a lot of us. We are Schmollandites. This is our life.....

Holland Schmolland

by Laura Kreuger Crawford

If you have a special needs child, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this:

Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives.

You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides, and gelato. However when the plane lands you discover, much to your surprise, you are not in Italy -- you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans.

You rant and rave to the travel agency, but it does no good. You are stuck. After awhile, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in the wooden shoes, the french fries with mayonnaise, and you think, "This isn't exactly what I had planned, but it's not so bad. It's just different."

Having a child with special needs is supposed to be like this -- not any worse than having a typical child -- just different.

When I read this my son was almost 3, completely non-verbal and was hitting me over 100 times a day. While I appreciated the intention of the story, I couldn't help but think, "Are they kidding? We're not in some peaceful country dotted with windmills. We are in a country under siege -- dodging bombs, boarding overloaded helicopters, bribing officials -- all the while thinking, "What happened to our beautiful life?"

That was five years ago.

My son is now 8 and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle-torn nation. With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills. In the process we've created . . . well . . . our own country, with its own unique traditions and customs.

It's not a war zone, but it's still not Holland. Let's call it Schmolland. In Schmolland, it's perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end-to-end. You can show affection by giving a "pointy chin." A "pointy chin" is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person's shoulder. For the person giving the "pointy chin" this feels really good, for the receiver, not so much -- but you get used to it.

For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion. If you are sad, you can look downcast and say, "Oh, Pongo." When mad or anxious, you might shout, "Snow can't stop me!" or "Duchess, kittens, come on!" Sometimes, "And now our feature presentation" says it all.

In Schmolland, there's not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00 a.m. are all traditional Schmutch pastimes.

The hard part of living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren't always successful. It's perfectly understandable that an 8 year-old from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year-old out of the store kicking and screaming, all the customers looking on with stark, pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people.

Where we live it is not surprising when an 8 year-old boy reaches for the fleshy part of a woman's upper torso and says, "Do we touch boodoo?" We simply say, "No, we do not touch boodoo," and go on about our business. It's a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings.

And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland, who insist that the pants must come off no matter where they are and regardless of whether another pair of pants is present.

Other families who have special needs children are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking to a person from Norway (or in our case, someone from Schmenmark talking to someone from Schmorway.), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. "My child eats paper. Yesterday he ate a whole video box." "My daughter only eats four foods, all of them white." "We finally had to lock up the VCR because my child was obsessed with the rewind button." "My son wants to blow on everyone."

There is one thing we all agree on. We are a growing population. Ten years ago, 1 in 10,000 children had autism. Today the rate is approximately 1 in 250. Something is dreadfully wrong. Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic predisposition has collided with too many environmental insults -- toxins, chemicals, antibiotics, vaccines -- to create immunological chaos in the nervous system of developing children. One medical journalist speculated these children are the proverbial "canary in the coal mine", here to alert us to the growing dangers in our environment.

While this is certainly not a view shared by all in the autism community, it feels true to me.

I hope that researchers discover the magic bullet we all so desperately crave. And I will never stop investigating new treatments and therapies that might help my son. But more and more my priorities are shifting from what "could be" to "what is." I look around this country my family has created, with all its unique customs, and it feels like home. For us, any time spent "nation building" is time well spent.

-- The End --