Seeking Other Moms Dealing with a Child's Autism Diagnosis

S.--I am a mom of a now 21 year old with different developmental issues than autism, but I work for the Missouri Developmental Disabilities Resource Center which is located at the Institute for Human Development at the University of Missouri-Kansas City. We have information, resources, peer support, and leadership opportunities available for individuals with developmental disabilities and their families. You might be interested in the peer support program, where we can match you with another Mom who is trained as a mentor, adn she can talk with you about your experiences, share her experiences, and help you feel more in control and less alone. I can also refer you to many other resources in the area that will help you as you begin your life experience with a developmental disability. Plese feel freee to give me a call ###-###-#### or outside greater Kc 800-444-0821. You can also go to our website at www.moddrc.org or send me an e-mail to ____@____.com. Looking forward to hearing from you! J. Hatfield-Callen

1 mom found this helpful

Hi S., there is a wonderful resource known as EFECT in the metro area. It stands for Encouraging Families with Exceptional Children Together. They are a group of parents that have children with exceptional needs. Alot of them are parents of children that are on the spectrum. Their webpage is www.efect.org. It really a wonderful group, that is full of support and help. They also have yahoo group where you can ask any question and get answers. Good luck!!

1 mom found this helpful

Hi S.!

You are not alone! My son, Joshua, was diagnosed with PDD-NOS in January. He'll be 4 years old at the end of the month. You are lucky that you found out now. The earlier you start services with your child, the better. If they are under 3, you typically can get free services through early intervention in your area. I'm new to Kansas, so I can't tell you exactly who to contact, but you can go to the Autism Link website to find services in your area. Just copy and paste this link. http://www.autismlink.com/services/index/location_id:17/s...
Now is the time to start any speech, occupational therapy, ABA, etc. that you are able to get. You should also look for a doctor in your area that follows the Defeat Autism Now "DAN" protocol. There is one in Overland Park, KS. His name is Dr. Jeremy Baptist. The DAN doctors are up on all the latest research, treatments, diets, etc. that might really help your child. My son really benefitted from going on the dairy free diet. Most traditional doctors don't give any information about the diets because they havn't been proven yet. All I know, is that I feel truly blessed to have accidentally found a book about it. It really made a difference for Joshua. By the way, the book is titled "Unraveling the Mystery of Autism and Pervaside Developmental Disorder" It's by Karyn Seroussi.
I also found the Moms Fighting Autism group helpful. They have free teleseminars that you can listen to about lots of different topics related to Autism. Just go to the Moms Fighting Autism website, join the group, and you'll be informed of any upcoming teleseminars.
I hope this information helps! If you ever need to chat, feel free to email me at ____@____.com luck!

My son (now 10) was diagnosed at the same age. It was traumatic, even though we had suspected something was wrong. There is hope, as long as you are willing to put in the time, effort, and patience, (prayer helps, too). Even though my son is older, we have been through the battle, and I would be happy to correspond with you to give you advice, moral support, whatever I can give. By the way, when my son was diagnosed, we asked the psychologist what the best thing would be to give him for Christmas (it was 2 months away) that might help him. She replied a dollhouse, because autistic children have trouble with imagination, and it would encourage it, plus it's a fun way to get the child to interact and learn to speak. She suggested a cheap one, but we got the Fisher Price one and our families got him the accessories. It truly was the best thing to break through to him!!!! Good luck, and please contact me if you like. We're still meeting challenges head-on. My email is ____@____.com

Hi S.. I dont have an autistic child myself, my neighbor does. She is a wonderful little girl. She has come leaps and bounds. When they first moved in she wouldnt talk to us. Now she comes over all the time. She is 13yrs old. And she is great. She is EXTREMELY intelligent. I dont know where you live, but here in Joplin they have a great support system. you may want to check that out in your area. One day at a time. LOVE is all you need. hang in there.

Hi My name is D. and I dealt with this diagnosis for my son Elijah when he was 26 months. He has PDD-NOS Pervasive Developmental Disorder Not Otherwise Specified. There is help out there for you and a support group in Kansas. I can relate to you my experiences with autism and ways I dealt with it. He is 9 now and in school. I am meeting with the school next week to get him his specialized teaching help he needs. I would love to chat with you by email. My email is ____@____.com

My son now 3 on Nov. 14 was diagnosed with several diagnoses at 22 months of age. I do not agree with it totallly. They said the only reason he did not qualify for Autsim was due to the social aspect...now Im not sure why because he does not interact with children or anyone for that matter in the correct way...they told me he could manipulate people but if that is the only reason why....i dont understand...My friend works with children with diabilities and she said he could still be diagnosed with autism when he goes to school. So. I can relate to having crazy times of every sort. He as therapy, speech/occupationl/behavior, through First Steps in Missouri for a couple more weeks then he starts early childhood mid. Nov. when he turns 3. We are trying a gluten free diet right now 90% of the time we have been on it since July but Im not sure its working...he is being tested for allergies Dec 10. So I will see what we should be doing then. I have talked with a support group in Lees summit where i live but have not gone to any meetings cause son never got that official diagnoses. He does have
-impulse control disorder,nos
-receptive language disorder
-sleep disorder
-rule out ADD (rule out means later when older retested due to being too young now)
-rule out Anixity disorder
-sensory modulation and processing disorder (shows signs of)
-sound system disorder
and I think thats all. Basically everything except issues with being social (which he does have) and the social part was why he did not qualify. I feel your love/pain. message me I have done lots of research and have a 20ish page paper of all sorts of info I can send to you in email that you could look at. Best of luck and message me.

well I'm a Stay-at-home dad the last two years. I take care of my 7 year old son that has autism. diagnosed at two or three years of age. theres going tobe days where ur going to want to pull out ur hair out! and will take a major toll on ur marrage. you need a lot of pations and understanding and love! ur hubby has to play a big roll on one of those three if not all three too! my sister just sent this to me so maybe this is a good idea. for myself to talk to others cause man somtimes i feel alone,traped and a little stir crazy, we don't go out much anymore it's hard the changes are coming so be ready cause ur life will change. it's all worth it. remember it's not about us anymore it's about the childern!
stay strong when people look at you wondering whats wrong with that boy or why aren't you whipping him, ur going to go thu a lot of stuff like that. people can be dumb and hurtful, i just turn around and say my son has autism what ur problem? but i'm ranting on sorry. so if you ever want to talk just buzz me my e-mail is ____@____.com okay ttyl

My stepson was diagnosed with PDD as a toddler. He is now 14 and you would never know he ever had any issues. When my husband and I first got together my stepson was 9 years old and he still had a few balance issues and he was socially immature. He may be just a tad behind socially now but he has overcome his fear of motion and heights, he can now ride escalators and ride a bike and go tubing and he even went skiing as Snow Creek last year. He does all the stuff that he could not do at nine. He plays football in school and is just a normal kid who "forgets" to do his homework and drives his parents nuts! I was not around when he was a toddler but they were very dilligant in his therapy, going to sessions and doing them at home. My husband said that he had to do many of the therapies alone because his mom could not take it. My stepson would cry and beg for them to stop but by keeping the thought foremost in his mind that this was for the best for his son my husband pushed though it and it worked. The first Dr they saw said that there was little that could be done to mainstream my stepson and fortunately my husband and his ex did not listen. They found a Dr that would work with them and a great therapy program and now my stpeson is a freshman in High School and is just you average "happy" teenager. I guess I just wanted to share a happy story with you.

I don't know anyone with Autism, or much about it. But today I received an email with the following article about autism. It seems to have a different perspective:
http://www.wired.com/medtech/health/magazine/16-03/ff_aut...

S., Hi! My friend also has an Autistic son. She would be glad to talk to you, please contact me, at ____@____.com, and I will send you her e-mail address.

My nephew was diagnosed with autism in April. He turned two July 30. He gets therapy 3 times a week. They also changed his diet to only foods without dyes, he mostly eats organic. It gets pricey but well worth it. He has already made tremendous improvement in just 6 months. He comes up and gives me a hug now, the first time he did it I cried. It used to take a while before he even acknowledged if someone other than his parents were there. His social skills have increased as well. There is a lot of help out there for you, the other women have given you great resources. I know it is a hard time for your family, love and support will get you all through. Good luck and God bless.
C.

We just found out that our youngest son has a genetic defect called microduplication which is found in a lot of children with autusim. Our pediatric neurologist is still labeling him as PDD for now, but wants him to receive 12 hours of therapy a week and he will re-evaluate him every year. We are in the process of getting my older son tested because he is also developmentally delayed and receiving therapy through his preschool. I believe he might have the same diagnosis as my youngest son, but we will wait and see. We are just getting him all the therapy we can and hoping for the best. He is a great kid and I just want him to be happy, which he seems to be.

S. -

Call 'The Belle Center' - p: ###-###-#### (administration office) is a good place to start. Here's their web address too: http://www.bellecenter.com/

I used to work with them as a Speech-Language Pathologist. They would be a great place to start for many reasons - not only for therapy, but also as a great support for families with children with special needs. I don't know if they still have them, but they used to have family meetings, parent support groups, festivals, etc. and can be a great resource for you to get started with your journey. They even have Sib-shops - groups that meet for siblings of children with special needs - which can help your other kiddo with all of the new changes on the horizon.

As you meet other families with children with Autism, try not to over-compare your kiddo with other children with Autism if possible. Because every child presents this disability in their own way, you can get overwhelmed by what he/she is or is not doing (or could do, or could not do). Your little one is your little one: complete with his or her own way of doing things regardless of if he/she has Autism.

Good luck with finding therapy for your little one, and for support for yourself and your family. It's great that you are reaching out!

J

I do not have a child with autism, but I have read that diet can play a major role in improving your child's life. The main one that sticks out in my mind is a gluten and casein free diet. Also steer clear of foods with dyes (especially red). Eating organically can really be benficial as well.

S.,

I just bought and started reading Jenny McCarthy's new book, Mother Warriors. I know a lot has been said about diet and traditional doctors don't seem to know much about that. In the back of the book under resources it lists MonaVie which is an all-natural drink made up of 19 different fruits including the superfruit acai. My whole family has been drinking it for months now and it is amazing. I can tell you how to get it. Email me, ____@____.com

S., my 6 year old niece has Autism. My sister is my biggest hero, I watch her in awe, I think she is an incredible mom and yet as someone that she confides in I know she worries and has doubts. She has no time to belong to a site like this ( she says) even though I have told her how fabulous everyone is here = ) If you have any questions I would be more than happy to correspond with you.
Your family is in my prayers,
B.

Hi S.. My son has autism and is 9 years old. He was diagnosed when he was 2 1/2. E-mail me privately and I can tell you alot of things to do to get started. ____@____.com

My 12 y.o. stepson is Autistic, but we don't have custody of him. However, if you're wanting more info. about Autism, you can contact the Autism Center of Burrell Behavioral Health. The main number for Burrell is ###-###-#### I think Burrell has several programs for Autistic kids.
I hope this helpes.