12 answers

Son Just Diagnosed with Autism

My 2 year old son was just diagnosed with moderate autism. I am not sure how to say how I feel , other than overwhelmed. I am quite unsure what to do next, we live in KC Mo and any support and advice or stories of your own would be so greatly appreciated. Thanks.

What can I do next?

So What Happened?™

Again I can't thank all of you enough !! It's been a whirlwind of a summer, but since Maddie's diagnosis things have really only gotten better at home. After becoming involved in First Steps, we learned of ABCn'D. This school is a treatment center for all kids on the spectrum, and the use of Integrative therapy, using occupational, speech, and behavioral...Today was his first day and both he, his dad, and I are in love with the staff and the other kids there. I guess what I have learned most from this experience is that you can never really be prepared for the future, but you have every chance to be informed. Again, thank you to all you mamas !!!

Featured Answers

Hi, L., this may sound strange to some, but you seem to me to be open to alternative, holistic therapies. My allergist, Dr. Jeremy Baptist of Allergy Link (located in Overland Park) specializes in treating autism nutritionally. I don't know much about what that treatment entails, but he has a lot of success with it and is well-known in the autistic community: http://www.body1.com/hero/index.cfm/1/6/1

BTW, I practice French with my daughter, too! Good luck, and let us know his progress.

1 mom found this helpful

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L.,
I was in the same place just 7 months ago when my daughter was diagnosed with Autism. I don't know about you, but I felt like my world had been turned upside down. I didn't really know what Autism was or what that meant for her future. I just knew that I finally had a name for what was making her withdraw from communicating with us. The best news is there is a lot that can be done especially when Autism is diagnosed early.

My recommendations are to take a few deep breaths, hug your son, and know that there is so much that can be done to help him live a full and happy life. Someone else mentioned First Steps. If he isn't already enrolled with them, contact them as soon as possible. They are wonderful. They are covering all of my daughter's much needed therapy, and he will qualify for them to cover your son's therapy services until he is 3. My daughter gets 10-15 hours of Behavioral therapy a week, 2 hours of Speech therapy, and 1 hour of occupational therapy every other week. My daughter could be the poster child for why early intervention and behavioral therapy work.

When we got her diagnosis in January of this year, she had not only stopped learning words, she had lost most of the ones she had. She didn't respond to her name, and she acted like she couldn't hear much of what went on around her. Now she is very responsive to her name and other sounds, she has learned how to imitate, point, and request. She can say and sign so many words that I've lost count. Much of what she does is still repeating what we say, but she is beginning to request things spontaneously as well. She still has a long way to go, she has to be taught how to learn and other skills that other children develop naturally. Learning those skills now will benefit her for the rest of her life. So the first step is to get him started with therapy as soon as possible.

The next thing I would do is to find local support groups. Some good websites to check out are www.mo-feat.org and www.judevine.org. It can help so much to talk to other parents who have been through what you are going through. Developing a support network will be helpful for many years to come.

There is tons of information out there online and through the library. I know I'm still learning about it and I probably will be for the rest of my life. Just know that as you take it a day at a time things will work out. You will find that you are the one helping someone else through a new diagnosis, and you will find that having an autistic child can be a blessing when they help you slow down and learn to treasure simple things like how cool the pattern in a fence looks, or how symmetrical so many things around us are. Find his strengths and encourage him. Feel free to contact me with any questions or if you want more specific help. Just know that as awareness about autism increases, there continues to be more and more help out there for our children. They still have a bright future ahead.

2 moms found this helpful

I agree with Bridget, Olathe has great services and so does the Blue Valley School District.

Check out the Austism Speaks website, too.

There is alot of information out there, just don't forget to trust your own instincts as you wade through all of it. Some things will work for you, others, not so much.

Good luck and please keep us posted! This is such a great website to get support when you are feeling overwhelmed!

1 mom found this helpful

L., Sounds like you are doing a fine job with your son and you have found out early on, so you can work with your son.
My grandson has aspbergers a form of autusim. They didn't know about until he started preschool. He loves movies, and drawing. Can communicate very well, has moments when he is stubburn, my daughter is very good with him and has learned to be firm and have a good routine. There is no spanking in there house, so he has plenty of love, he is now 11 and doing well in school, his social skills are still down but a very bright boy, knows how to get people to do things for him. He has a brother he loves very much and is a protector. No grey areas with him. It is right or wrong. We treat him the same as all the other grandchildren and don't treat him any different. There are some great books out there and kansas city should have some good programs to help.
My dauther lives in a small town and if she were in portland, oregon she could get more help. But every one has been great at school and at home. I just want to encourage you, I don't have any great advise. But Love hime and treat him the way you would a child who is so call normal. J.

1 mom found this helpful

Hi, L., this may sound strange to some, but you seem to me to be open to alternative, holistic therapies. My allergist, Dr. Jeremy Baptist of Allergy Link (located in Overland Park) specializes in treating autism nutritionally. I don't know much about what that treatment entails, but he has a lot of success with it and is well-known in the autistic community: http://www.body1.com/hero/index.cfm/1/6/1

BTW, I practice French with my daughter, too! Good luck, and let us know his progress.

1 mom found this helpful

L.,
My son was also diagnosed with PDD-NOS (on the mild side of the autism spectrum) when he was 2. I would immediately get in touch with the First Steps program. They are a federal and state funded program that provides therapy services free of charge. Jason received speech, occupational and behavior therapy all through First Steps. They came to our home as well as visited his day care site to administer the therapy. Most insurances don't cover the therapy so getting it provided through First Steps is amazing. It is difficult to navigate through all the needs and especially during this time when you are just coming to terms with the diagnosis. But therapy is the key and the earlier your son starts the better! The difference it has made for my son is remarkable. He is now 4 and his speech and social skills are compatible with his normal peers...as well as his twin sister. Good luck!

1 mom found this helpful

Honestly I would move to Olathe, if at all possible, because they have AWESOME resources for special needs kiddos. We moved here from Independence, MO because I couldn't get my son services. (He's Bipolar.)

1 mom found this helpful

You might check out Joshua Center to see if they have services that would be helpful to your family.

http://www.joshuacenter.com/

1 mom found this helpful

L.,
I am not speaking from experience, but I can imagine how overwhelmed you must feel. We were on vacation last week and I read an article on autism about how children were "cured" who followed a gluten free diet. I only skimmed the article, but I found that diet can greatly affect autism. Just a suggestion to research this or seek the advice of a doctor who practices natural medicine. There is a name for these doctors...I just can't think of it off the top of my head. Good luck!

1 mom found this helpful

Hello L.! My name is J. Hatfield-Callen, and I am the parent of a 21 year old son with a developmental disability (different than autism, however, sometimes it is just good to know there is another parent out there!) I also am the information, resource, and outreach specialist for the Missouri Developmental Disabilities Resource Center that is located at the Institute for Human Development at UMKC. We have lots of information and resources that we can offer you on Autism, including printed information, links to support groups, mentor parents, resource activities, etc. All of our information is free of charge. Please feel free to give me a call at ###-###-#### or send me an e-mail at ____@____.com. I would be happy to provide support to you through a variety of opportunities. Sincerely, J. Hatfield-Callen

1 mom found this helpful

I have a niece that has mild autism as well as ADD. The main thing we have learned with her is that she has to maintain some sort of schedule and if things change out of the ordinary she could have a meltdown. When she started school her Mom made a chart with pictures so she would know what to expect for her day. It has a picture of their house, school bus, picture of the school, babysitter, church, baseball, and other activities that may come up during the week. They change the pictures whenever the routine is going to change that week so she knows what is coming up. They also have pictures in the bathroom to remind her to wipe, flush, and wash hands as she would forget one of those as 3 things at once is hard for her to remember to do all the time.

She also has a tough time in large crowds so when we have family get togethers we try to keep her occupied to keep her busy. She usually helps set up the table, give everyone a napkin when we are eating or anything like that to keep her busy. She likes to play like she is our waitress or hostess.

It is tough but with a lot of patience and having a set schedule and reminding him often of things he has learned helps out a lot.

Read a lot about it and get yourself educated on it because the more you understand his needs the easier it is for you to handle it. Also have family members and anyone that is close to him read and learn so they understand him as well when he is with them.

My SIL researched all of her daughters needs that she was diagnosed with and made packets and handed them out to family members, the babysitter, teachers at school and church, and others that are close that would be around them often so they could read and learn about her needs and how to handle situations when she has a meltdown. That helped me a lot as she comes to our house often and I have learned how to handle situations when they come up.

My friend's son is two and is diagnosed with mild autism and RAD. They just had the evals done in the last couple of weeks. It's hard to get an eval done this early isn't it? They kept running into dr.'s that wouldn't do it becuase he was so young. I know that Children's TLC is a great preschool/developmental center for children with special needs. He will be starting there in August. I'll ask my friend for any other resources she's come up with. Is he getting PT, OT, or speach through infant/toddler services? They should help you out also with different resources available to you. One thing my friend learned is that it's their job to find you what you need..not yours to spend your day calling around.
I'll be in touch.

L., My son was diagnosed a month before he turned 3 as being mildly Autistic, he is now 9 1/2. We were very upset with the initial diagnosis but it has honestly been a blessing. We have learned that for a child to get help in the public schools they almost HAVE to have a diagnosis of some kind. With Cam's Autism diagnosis, whatever his teachers think he needs he gets. His 2nd grade teacher told me that she had several kiddos in her class that needed help much more than Cameron, but she couldn't get it for them because they didn't have a diagnosis of any kind. With the Special Education pre-school and now in grade school Cameron is doing very well.

I wish you the best. M.

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