Seeking Support from Moms with Child with Asperger's Syndrome

I have a friend I am e-mailing this to she is going through this same thing.. The ar trying to dx him with ADHD and or Aspbergers.. I do my best to just listen, and yes i just treat her kids like they are normal kids. Also I can tell you no matter what a child is dx'd with they still behave for others differently than they do for you.

My son doesn't have aspergers but he has PDD. He recently went had teh testing done at Childrens Hosp in Salem, MA. I had actually filled out the paper work for Childrens in Boston too and Salem was able to give me the appoinment first. I know it's very frustrating to have to wait such a long time, but they are very good. My son had 2 days of evaluations but it really wasn't that bad.
The only other advice I can give at this time is to document things that you see whether they are negative or positive and this way when you do talk to the doctors you'll have a lot of input and examples of his behavior.
Good luck.

Hi A.. I understand that you are going through a tough time. I am writing because although I have never had a child with Asperger's myself, I am a teacher and have worked with several students with Asperger's in my HS drama program and I have to tell you that these were some of my favorite kids!

I have learned so much through teaching, but one of the most important things I've learned is that every child has special needs. Take it one step at a time and trust that your son could some day be one of the students their teacher writes messages like this about!

Good luck and best wishes!

My nephew has asperger's. It was very trying on my sister, but she worked hard to make sure he got everything he needed. He was in a contained class for may years, becauase it was best for him. He never lacked in intellegence, in fact he was an A/B student always. He has a very high IQ. He actually mainstreamed into the regular high school about 1/2 way thru his JR year. He has since graduated and is now serving in the US Army. He has had fatastic opportunities (the structured environment is EXACTLY what he thrives on). Socially, he has improved overall. I understand its the social part that is the big thing with aspergers. Best of luck, you are in my thoughts.

Hi A.!
I know that there is a fairly new school in Beverly, Ma and that it specializes in Aspergers and Autism, I can find out more info if you would like. I also wanted to say that I was a teacher and we had a 4 year old that had Aspergers-although it was very tough for the parents and the staff as well, this child was amazing in so many ways...I think that he was actually able to fix a car...he was a walking genius, very gifted.

Stay strong-you are the best parent for this child!!!

A school staffer said that our grandson, 4, was autistic (a word used way too much, I think). He is very very bright - but couldn't hold a pencil. He spent a LOT of time doing "brain games" and not much doing Brawn stuff. Turns out he has "low tone" -- and is doing a lot of outdoor exercise stuff (skiing, tennis, swimming, running around, jungle gym, catch...) He works regularly with an Occupational Therapist. It might be helpful for you to get a date with an OT -- just to clarify whether your child is truly Asperger's or more "low tone" or even both...
God Speed!

Dear A.,
There are lots of resources out there. Are you in MA? If so each town should, but not always has a local special ed parent advisory council (SEPAC or SpedPAC) and they may be a good resource for you. There are lots of support groups. I am part of the Framingham SEPAC and our web site has lots of resources and lists of local support groups. YOu can go to www.f-sepac.org to find out more. Good luck.

Having him RX's will be the start of answers to so many questions you have had for awhile..you should find a local support group or an online Yahoo one as having other parents who are going thru or have gone thru the same thing will be so lifting and helpful.

Look into these two books right away:
http://www.out-of-sync-child.com/
The Out-of-Sync Child: Understanding Sensory Processing Disorder

Now you know what is going on and how to start making sense of things..there is alot of help out there..

Good Luck

I have been down this road, my son who is now 20 was dx'd with moderate autism when he was 3 1/2yrs old...I want you to know that age 4 is really early for a proper dx and what degree the autism is but that they are giving him early intervention is the key here....This will be a scarey time for you and your son..frustration is the one word i can say about that time/not knowing but knowing that there was something not right...Get him involved in as much as you can and do not forget to intergrate him in other activiites...The testing took us about 9months at the local childrens hospital..He saw about 14 specialists a couple of time a week, it was alot of driving and a trying time but in the end it put the wheels in place for my son's programs...
I can tell you as you as starting your journey with him that it will not be easy, read as much as you can, get involved in support groups in your town or state and remember you are not alone..you are welcome to email or call me with your questions or concerns

Good luck to you

Dear A. (and Sue as well!),

My 5 year-old son was also just recently "unoffically" diagnosed with Asperger's. I've suspected it for quite some time and, very long story short, he began school (Kindergarten) for the first time this year and was essentially kicked out (or, I guess "politely asked not to return") because of behavioral issues. I brought him to his primary who, as well as a behavioral therapist, stated that they "do not think I am wrong in my assumption" that my son is autistic.

My son was in a private school (on scholarship) and we contacted the public school and they stated as well that he would just be put in the regular mainstream program and get no extra help until he is OFFICIALLY diagnosed. Frustrating, I know!

Please contact me offlist and I'd love to chat with you and help any way I can.

{{{HUGS}}}
Deb

Hi A.,

A friend gave me one of the original books and a great resource on Asperger's syndrome, "Asperger's Syndrome, A Guide for Parents and Professionals," by Tony Attwood. Also read Temple Grandin's "Thinking in Pictures". There is also the Asperger's Association of New England: www.aane.org.

My son is 14 and was diagnosed with Asperger's very late. Most kids do outgrow many of their tendencies as they get into high school because they finally realize that they're different and don't want to be. Follow through with the same interventions at home as they introduce in school for better results.

Good Luck.
D. C.

Hi A.
My son Nathan who is 5.. has lots of issues.. sensory issues are huge, as well as communication, etc.
We are having him evaluated by Easter Seals on April 1st for an official diagnosis.. which we are pretty confident will be on the Autism or PDD spectrums or a Sensory disorder.
Since april 08.. he has had sleep issues.
And in the last 5 wks.. has hit a wall.. digressing in so many areas.
I would love to talk to you more.
Email is: ____@____.com

Hi A.,

I just wanted to make you aware of a line of products that are designed specifically for children who need neurological, metabolic and digestive support. The product line is called Might-a-mins Spectrum and they include Isotonic Multivitamin, Isotonic Digestive Enzymes and Isotonic OPC - 3.

You can learn all about them at the following website: http:/www.marketamerica.com/beckyzinn. Look in the department tab for Health and Nutrition and you will find these products under Children's health.

Best wishes to you and your family! Please feel free to contact me if you have any questions.

-B.

Hi A.!
My son is 26 months and he does not talk, he is in Early Intervention, and is going to the neuoroligist October 15th. Our caseworker suspects autism, because he gets very frustrated with her, doesnt talk(says about 5 "words")and doesnt like it when she touches him. I have been researching autism endlessly and he does have a few signs-like being non verbal, but Im wondering what was your son like when he was 2? What can I expect at the neuorolight? If your willing to share this with me Id be grateful! Thanks so much
S.

Been there, my daughter is now 8 almost 9 and was diagnosed by childrens hospital when she was around 4 with developmental coordination disorder and a language processing disorder. It all started with her 3 yr preschool teacher telling me she thought she had sensory processing disorder, she later was referred to the preschool in our town run through the school district to get evaluated she was put on an IEP and did wonderfully. She is now in 3rd grade and is still receiving OT and speech therapy. She didn't always get speech b/c she does not have problems with speaking, it is just the language processing piece. She has some emotional and low self esteem issues and 3rd grade is turning out to be challenging to her, she is actually still being seen at childrens and I can't tell you how happy I am about all the doctors. They are so thorough with everything making sure they rule out the smallest of things. I would love to chat with you further if you want to e-mail me at ____@____.com started at children's when she was 4 and I am still looking to them for guidance even at 8. The wait is worth it!!!

One of my four children was also suspected to have Asperger's Syndrome. My son has had Special Ed services since he was 3 (he's now 15). A doctor did not officially diagonose him with Asperger's Syndrome until he was 12 years old! He has NonVerbal Learning Disorder which shares ALOT of symptoms with Asperger's. Many things that come naturally to us can be taught to kids with Asperger's Syndrome. My son has come a long way since that preschooler who would not make eye contact and never played with kids his own age.

My advice is three fold:
Keep as much structure as possible, prepare him for changes to his schedule and keep the chaos in the house minimal.

If you know there will be a difference in your schedule, try to tell your son about it first so he can be prepared. Social stories work well for these kids. You can ask your son's teacher about them. For the most part, they are little stories that break down everyday events into steps that you review with your son.

I think it's also important for you and your husband to get out regularly. All couples need this time alone but I think it is especially important for parents who have "special" kids to have this time. The stress level is already high enough at home. It tends to be lower if you and hubby are on the same page and happy with your relationship. Sometimes parents will say they can't get out because they don't have enough money for date-night. Don't let this be an excuse. Even if you just step outside once the kids go to bed and enjoy the night air... the important thing is just have some date-time with your significant other.

It sounds like a good idea to assume your son has the diagnosis before he's officially diagnosed with it. Whether or not your son has Asperger's Syndrome, structure and routines will help. I think you're doing a great job by reaching out for advice and keeping that appointment with Children's Hospital. I know 12 months seems like a long time to wait but it'll be over before you know it, doesn't feel some days like he was just born???...it's amazing how the time flies when you're a mom!

I hope this helps.

I'm so sorry you are going through this, but the "good news" is, all forms of autism are getting a lot of attention these days so there is a lot of publicity, information, treatment and HOPE. My son has a friend with Asperger's who has developed tremendously over the years - he's now a very high-functioning honor student in high school with tons of friends. He's clearly "different" in some ways but it has not kept him from having good social relationships - he's one of the captains of the cross country team, he drives, he speaks publicly at team dinners, for example.

There is a lot that can be done with diet too. Do your research, but there are also 2 books out by actress Jenny McCarthy, whose autistic son has made great strides. That might be easier reading to start with - not as technical as some things you will find.

Reliv International is a research-based food science company that makes a variety of nutritional supplements. There is a product made specifically for children. The products are patented and completely safe, even for infants and pregnant women. The scientist at the head of the research & development department, Dr. Carl Hastings, is world-renowned for his work in nutrition. Reliv is in its 20th year and did 10 years of research before even bringing its products to market. It has no drugs, no stimulants - it's all vegetarian, high quality, and constantly tested for purity and consistency. The company has been very highly rated by numerous business magazines (Forbes, Fortune, etc.). I mention it because your research will tell you that nutritional deficiencies and contaminants are a huge problem in Asperger's as well as other forms of autism and many other diseases. Our food comes from depleted soils (even organic foods, although they are much better than soils from mega-farms). Our produce is picked early and artificially ripened. It doesn't have the nutrients it needs. Reliv gives us the nutrients we need in a HIGHLY ABSORBABLE form and IN THE RIGHT BALANCE. Many kids on Reliv have made great strides against all forms of autism as well as other diseases, because Reliv supports the immune system and cleans out toxins. I would be happy to connect you by phone to other parents whose Asperger's/autism kids have improved on Reliv. You can also call the company directly at 1-800-RELIV-US and ask to be connected to an ambassador in your area. These are highly trained Reliv reps who have banks and banks of people with success stories who truly want to share their health with others. My family has had life-changing results with Reliv and I have talked to hundreds of others with the same experience. I want you to know that there is hope out there!! Again, Reliv is FOOD and it will not conflict with any other therapies you pursue with regard to your son. It's just another tool, but an important one. Lots of luck to you!

First of all, I commend you for looking for advice and looking into reading more about Asperger's Syndrome. I work with lots of these children. Many times at your son's age, they give the dx of PPD-NOS or Autism Spectrum Disorder before they label as Asperger's... but that might be changing these days.... the thing is, as his parent and the doctors as the professionals who see these children regularly, I believe Asperger's is definitely detectable this early on... so I think you are doing a great job in "treating it" as such until you get a more definitive answer.

My biggest recommendation to you is to prepare your son for events to come. Picture schedules work very well to help reduce anxiety about daily activities, what to expect, etc. Some people use real pictures to represent objects and activities, and some people use Mayer Johnson Picture Symbols (the program is expensive, but very useful). I think all children could benefit from these - not just children with Asperger's Syndrome or ASD, but it's been known that children like your son understand much more when presented with visual stimulus vs. just auditory. It might be something as simple as a "first / then" board. First, "school", then "grocery shopping". Whatever it might be. Or smaller steps to help him complete tasks such as the steps to getting dressed and picking out clothes or brushing his teeth independently. Not sure what your child needs.

Remember that children with Asperger's are very bright children - but have most difficulty with social appropriateness and skills to function with peers as well as adults in an "accepted manner that society conforms to". It's not unusual for a child with Asperger's to blurt out an inappropriate thought or to publicly pick his nose or reach into his pants to adjust... these children learn best by hearing or seeing DIRECT and EXPLICIT examples. Figurative language or assumptions cannot be made - as it is completely misunderstood by them. They will not "pick up" socially acceptable behavior by just observing and watching and learning by trial and error (well they do, but it takes a lifetime) or from other people's facial expressions. They need to be TOLD, "Johnny, it's not appropriate to pick your nose in front of other people. It makes people feel uncomfortable because it's yucky". and then give an alternative: "If you feel you need to pick your nose, excuse yourself by saying, "I need to go to the bathroom (even if you don't have to use the toilet), and you can pick your nose in there where it's private, and then wash your hands when your done." Something to that effect. Direct, and no beating around the bush!

That's just the tip of the iceberg of course... but keep doing your research and asking questions. Your son will do great with such a good advocate!

I listened to a wonderful audio book - "My Life with Asperger's" and it's narrated by the author, John Elder Robison. It gives tremendous insight into how these people perceive things and events around them - a first hand account! I really enjoyed it.

Hi A.,
My 6 yr old son was also "unoffically" diagnosed with Aspergers. He has not been to see a specialist yet, only because we have "state" insurance, and no car. His Doc wants me to take him to see someone who specializes in Spectrum disorders, but up till this point, we haven't been able to find someone around us!!
He is very bright, has a 4th grade reading level (in 1st grade), but his penmanship is way lacking.
One thing the Doc noticed, is that my son responded much better in dealing with animals than other children! Apparently, children with Aspergers usually deal with animals, like "other" children do with human friends. He is doing a little better in school, but still has these episodes (he calls them meltdowns) at least 3-4 times a week...and his teachers and other professionals in his school are at a loss, because they can't offer him the things he might need, because he lost his Special ed "rights"??
Feel free to contact me off list!
We wish you the best,
Blessed be
-Sue

Every child on the spectrum is different, so your son's needs or problem areas may be different than anyone else's child. I live in CT, so I do not know about NH services. Here, the official diagnosis will get you more and better services. Therefore, you may want to seek out other pediatric neurologists that can see you sooner. Early intervention is the key. When I first talked to my pediatrician about my son's behaviors, the waiting list for all the big hospitals and autism specialized clinics was between 10 to 26 months. After networking, I found a pediatric neurologist, specializing in autism, that was able to evaluate him within 8 weeks. Again, I am not familiar with NH, but look into local support groups. These people will be able to guide you to the best local sources and it will give your family a great place to socialize in a fully accepting forum.
Finally, as another mom recommended, The Out of Sync Child is a must have book. Once you understand the principles of sensory integration, I think you can really tend to your sons needs in a productive way. If there are any specific problems or questions, feel free to contact me.
Good luck. Remember, you have been given a child that sees and experiences the world different from you. It can be a beautiful thing, but it requires a lot of patience.