Any Moms/Parents out there that have Children with Autism?

[Kristy-Danno's Mom]

Is there any Moms/Parents out there with children with Autism ? I would love to talk to you and share stories and experiences.

Our 10 year old son was diagnosed with Autism just over a year ago. I am still learning about this disorder and doing whatever I can to help our son.

[Carol]

Hi Kristy, I don't have a child with autism, but i'm a school bus monitor for autism children. I was just wondering why was your son wasn't diagnosed till he was 9? the youngest kids on my bus are 3 and the ages go up to 10. I love these kids,they are so cute an innocent, and i feel sad for some of them because they just don't know whats going on in their world.
have a great day!
carol

[Kristy-Danno's Mom]

Hi Carol,

From the time my son started kindergarten they knew something was not right. They started him in speech therapy in that year. They just thought that he was a little slow for his age. It wasn't until he got in 1st grade that his teacher suggested having him tested for Autism. Then it took us a whole year to get the school and ISD to get the testing done. Our son never really displayed any of the normal signs of an autistic child. He seemed to be right up there with his sister who is 2 yrs younger. It wasn't until he was 5 and was to start school that I noticed he was getting behind his sister in some things. So I held him back a year thinking maybe he just wasn't ready for school yet. He did have very bad separation anxiety at that time, but just thought it was because I had been home with them since he was 3 and he had gotten used to having mom and dad there all the time. Bare in mind, at that time I knew nothing about Autism and had never really heard of it. So I wouldn't have known what to look for even if he would have had any signs back then.

All of this was very new to me and I wasn't aware until we started taking our son to a psychiatrist of what my rights were as a parent and how much I could get involved in how he is taught in school. But I am learning fast and am getting very involved with every aspect of his schooling, with the help of his therapist.

Our son is on the low end of the Autism Spectrum. So he is not extremely Autistic. He does have his problems with separation anxiety, trouble completing his homework, staying focused etc. But we have noticed that he seems to be going backwards instead of forwards but we are working on that.

It is so hard at times because our daughter who is 2 yrs younger is extremely bright and school comes so easy for her. She doesn't understand her brother or his Autism. This is a whole new world and learning everything there is to know and helping our son is very time consuming and little sister doesn't understand why little brother gets all the attention. But she has talked to Matthew's therapist also and is trying to understand whats going on with him.

Thank you Carol for responding. I appreciate hearing from you!

Take care,

Kristy

[Brenda Sue]

I don't have an autistic child - but a neighbor (who moved) did. We noticed a significant difference in his behavior after eating wheat!! Have you tried a gluten-free diet?
This kid is brilliant with computers - it is amazing!!

[Kristy-Danno's Mom]

Hi Brenda, no we haven't tried anything with his diet yet. My son is an extremely fussy eater and won't eat a lot of stuff. So that is not something we have explored yet. Our Matthew is very brilliant with computers also and is a very good artist. He also is very good at video games. He can solve one in just a couple of days! You should have seen him the first time he played Guitar Hero. He beat his Dad and older brother. LOL

[Jackie]

Hello Kristy,I have a daughter who will be 25 years old this month who is Autistic. She was diagnosed when she was 2 1/2. My husband was out on a ship in the Gulf when we found out. She had severe separation anxiety when she was young she also had a very bad temper and behavior problems. She is considered mild to moderatley Autistic and mildly retarded anytime that they are 2 years or more behind their peers they are considered retarded. She lost all of her speech when she was 2 yrs old and did not start talking again until she was over 4 yrs old.We were transfered to Denver Co when she was 4 and she attended the John F Kennedy School for Autistic Children for 2 or 3 years. It was a godsend!! They got her used to being touched and got her to talk by using music and games. She has been on several meds to control her aggression over the years but now only takes one med that controls her blood pressure and keeps her on an even keel. She now lives in a group home with 2 other autistic girls that is 1 hour from our house and comes home 2 weekend a month. She will never be able to live on her own for safety issues. She attends a day program at the local Arc and does a little job there. She seems to enjoy this. We did not know anything about Autism Way back then only 1 out of every 10,000 children had it, and that was mostly boys only 1 out of ten was a girl. We had all kinds of tests done to see if it was genetic,but her form was not. There were not very many places to turn to back then for help but I think now with all the awareness it has gotten better. I think that 1 in every 150 children now has Autism. Scary thought. If you would like to talk let he know.

[Kristy-Danno's Mom]

Thank you so much Jackie, I would love to talk to you!

I do worry about Matthew's future and if he will ever be able to live on his own. But if not then he will always have a place with us. But I do worry about when we are gone what will happen to him. Big brother says he will take care of him. We just have to see how he develops and get him all the help we can and go from there.

Yes please I would enjoy talking to you!

Thanks Jackie!

Kristy

[Jackie]

Kristy, That was one of our worries as well. When out oldest daughter moved out and started her adult life we were faced with day care issues, there were no daycare centers for Autistic children and she could not handle a reg daycare center. That is when we looked into group homes, it took a long time to find one that we liked and felt safe with. Karen was 15 when she moved into the group home. It has made our daughter a little more independent and is working well for all of us. I did not want the responsibility of her care put onto my other children , they all love her very much and will be there to over look her care when we are gone. My oldest has 2 small children and I did not feel it was fair to my daughter to have to take on her sister if something happened to us. When Karen comes home for a weekend she gets antsy and ready to go back buy noon on Sunday.

[Suzanne]

Kristy: I am not a parent of a child with Autism, but I am a paralegal who works with parents and people with disabilities. I have a few suggestions - first of all read, read, read everything you can about Autism. You will become your child's strongest advocate because you know him better than anyone else! Next, find an autism parent support group in your area. These folks will become your allies, confidants, and shoulders to lean on. If you are an assertive person, that's great. If you're not, take a class in how to be an assertive advocate for your son. Alot of people confuse assertion with aggression. Learn how to get the best services for your son, whether they be educational, medical, or any other service that he needs. And always remember, YOU know your son better than anyone else. Oh yeah, and I work with a woman who has a child with Autism and she swears by a gluten-free diet and also no Red Dye #2. Not sure if this holds true for others, but she says it worked wonders for her son. Good luck! Autism spectrum disorder is truely unique.

[Jackie]

Suzanne is right!! You have to be very pro-active to get services. I am hoping with the new awareness that things will get better for the families. Jenny McCarthy has a child with Autism and a lot of rock stars are trying to raise awareness.

[Lou S]

Kristy - our 21 yo son has Asperger's - which is on the same PDD continuum as autism. He was finally diagnosed when he was a junior in high school. We always knew he had a PDD, but it was so helpful to finally have a definitive diagnosis. Read as much as you can, and read somemore - advocate for your child, even though people do not like you for doing this - accept your child for the beautiful person he is, and be open to the experiences you will have because you have him as a child - Take care - Lou.

[Valerie (Adam's Mom)]

Hi Kristy, I dont"t have a child with autism but I work with them and have been for about 5 to 6 years these other women are absolutly right do alot of research, there are alot of different programs out there that could be specfic for your childs level that could help. My program is modeled after ABA Applied behavior Analysis I haven't heard you mention any behaviors with your son though or any communication issues. Again the other women are right when they say you are your childs biggest and greatest advocate. Do what you can to find out everything and don't worry about slighting any one. I have seen parent that do not and their child gets lost in the system. I don't mean to scare you but you have alot of work ahead of you. It is very much worth it when you see the light at the end of the tunnel and you will. GOD BLESS

[Kristy-Danno's Mom]

Oh my gosh! You all made me cry!

Like I said in the beginning this is all new to me, but I am slowly learning the things I have to do for my boy. My Matthew is my little sweetheart. He has been from the day he was born. He was such a good baby, he loved to be cuddled and still does. He hardly ever cried. He did not have any problems with his speech, or never stopped talking. He did around the age of 4 we noticed started to have difficulty expressing his feelings and making sentences. He is very loving and considerate of people and animals. I could never understand parents that chose favorites among their children, but I do now. It's not that I love Matthew more or care about him more than I do his big brother or little sister. I just love him in a totally different way. I am so protective of him, I am all my children but especially him. It has not been easy, I think at first I was in denial even though I knew something wasn't quite right with him. But when his 1st grade teacher suggested that he might have Autism I felt sick and started to question what did I do wrong. I must have done something to have caused him to be that way. I blamed myself for doing something to my precious little boy.

But I finally got over that and after he was diagnosed and started going to therapy I learned that I am, his eyes, ears, and voice and that I have to make sure that my precious son gets everything out of life that he deserves. So I am learning, I have been reading and have begun to implement the things that his therapist suggested I do. I have been involved more in his schooling. I pass things on to the school from the therapist, to try to educate his teachers. I am not an assertive gal, but I am going to learn to be! I admit that it isn't always easy, my hubby is in denial and thinks that this is something that Matthew will just "snap" out of someday. Even though I tell him he won't. He gets impatient with Matt and doesn't understand why he is the way he is or why he can't understand the simplest of things. But it doesn't matter if I have to do it all alone, I will. I love my little boy and want the best for him and I will not give up or give in until he has the best the world has to offer.

Thank you all so much for the information, I appreciate it more than you know!

I wasn't sure when I started this discussion whether anyone would respond. But I was hoping someone out there had some wisdom and experience and you all came through for me! I was trying to take my mind off of my oldest son and was preparing some things for Matthew for school, and thought why not. Your word of encouragement and suggestions are priceless thank you so much!!!

I would love to hear anything else you want to share!

Kristy