I have a child with special needs. He has Aspergers, High Functioning Autism and Sensory Disorder. I felt so guilty for so long, wondering what I did to cause it. We'll never know. Was it the pitocin? Was it stress? There's a new study pointing to the father's advanced age as a possible cause for autism (we were both 38 at his birth), but that doesn't explain all autistics, nor does it happen to every child born to an older father. I think it was just something in our genes. However, maybe things were set just so, and something happened to "click" the switch on. Bottom line is, we will never find out. There's nothing we could have done to prevent it, and there's no way we're giving him back!!

When we find out we have a special needs situation, it's so important to do our research. My dh is still a bit in denial. The sooner we stop denying it, the sooner we can find appropriate resources. My son will probably never be cured, any more than someone who loses a leg can be cured; there is no cure right now for what he has. However, he can be taught to cope, in the way the person who loses a leg can be taught to walk, run and race, given the right tools. With the right motivation, therapy and tools, he can even excel. We can teach him to cope and be a productive member of this world, playing up his strengths. I can't do it alone. I need professionals, teachers and friends to help. He will always have to exert extra effort to succeed, but will not need extra effort in some areas others do. Right now he can tell you just about everything there is to know about dinosaurs, animals, Pokemon, and his latest obsession, Bionicles. But he won't pick up on the fact that you don't want to hear about it, even if you change the subject. He is so intelligent, but you may think he talks too much. He is excited, but he may seem loud and out of control. It is important that we don't make excuses for him, but that we make allowances. He make take longer to get dressed (he tends to space out and be lost in thought - his latest Bionicle adventure, a story he is writing, is taking shape in his mind, and he will want to videotape a movie of it tomorrow). He may not want to play baseball today, but in six months may be obsessed with it, and may or may not excel, becoming the best on the team, or the one getting his feelings hurt once again by being the last picked.

I was so relieved when I received his diagnosis when he was five. I just wish I'd known it sooner. I was heartbroken, too, to have the confirmation that he wasn't "typical". But I was relieved that there was a name for this and proven therapies to help. I was relieved that he wasn't on the "severe" side of the spectrum, but disappointed that because he appeared "normal" I would have to fight for the help I knew he needed. The school district at first thought he wouldn't qualify for any of the programs (before official diagnosis) because they don't have anything for "behavioral" problems (he has to touch people, and has boundary and personal space issues). Aspergers children are often mistakenly labeled ADHD and given meds that do no good. Fortunately, an intelligent head of the department recognized that the motor skills needed further testing, which showed some borderline delays. This has opened many windows for us. If you have a child like this, educate yourself and search out others like you to help find the resources. It is easier to know that I can't "fix" my son, but I can help him adapt to life, and life to him. Sometimes I want to tell his classmates' moms why he is, perhaps, the "odd" one out, as I want him to be invited to the birthday parties and not stand out. I know they would then encourage their children to be kinder to him. But, in the long run, as he is learning so quickly what social skills are and how to be a friend, I don't want him to be included out of pity, but because they like him. Aspergers children have a problem with eye contact. Yet, just this week, I have seen a marked improvement in his eye contact. He is trying, and his self confidence is rising. I love my son. He is the best big brother to his little sister anyone could ask for, and he makes me proud to be his mom. We have a lot of work to do, and are only at the beginning of our journey. I'm on my way to the Emerald City...think I'll find a wizard?

Wow, Desertmom, I read this and had to go get DH and asked him to read it also. He does and then says, "I didn't know it could be my fault because of my age?" It really struck a cord in what you wrote about denial or fault.

It takes so much to get past the fault, why, what if, what can I do. Once we reach acceptance or something close to it, we can only then start to be productive and working towards not a cure but the best possible out come.

All the tests in the world won't change the fact that our children do have a disorder and we can't change that diagnosis, but with a lot of help and determination, we can change the outcome to be the best possible.

I truly understand how the NT's are so mean and cliquesih. Our children will never fit in but I guess that is why I don't leave my home with DS. I know we are different and I like my fake world. When he has to go to school I might have to know more about that but for now, I do sit in a bit of not denial, but my fake world.

Hugs to you Desertmom and thanks for posting a note that really touches my heart.

April

Desert Mom - you could have described my DS - our latest special interest is also Pokemon, Legos and the Muppets from the Muppet Show. Not sure how he gets his special interests, but he does. While we work on social appropriateness (not everyone wants to be asked who their favorite muppet is), I feel we are making progress. I try to take pleasure in the baby steps. I think for me, I had to "mourn" the fact that I will never have "normal" (and btw, what really is normal!?) - grieve and then go on. I feel that I am a better advocate for my DS when I fully appreciate all of his gifts, even if they are quirky to some. He has made my life richer and fuller because he is who he is.

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Debbie

"Watch the pennies and the dollars will take care of themselves." --Benjamin Franklin

Thank you to all of you. Each of your posts made me cry...not out of pity...but because you are all such wonderful Mommies, and God knew this when he gave you these children. God Bless All of You...even more than He already has.

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Shaking in my boots (well, if I was wearing them in the middle of summer!), but glad to be back!

maoftwinboys: I agree. What is normal? I think I posted before how someone called my son "weird" at school. I told him that everyone is weird in some way. Everyone has quirks. That's what makes us all different. My husband's jaw dropped and he (my husband) said, "You know what, mommy? (hate that from him - I'm not HIS mommy) You're right! Everyone's weird in some way." Who defines normal? In this sarcastic society, the critics look for anything that is not different from them so they have something to ridicule and get attention. Gives them a sense of superiority. Hmmmm. Am I describing grownups or teenage girls? Like you, I am richer because my son is different. He's a keeper - ain't throwin' him back. Blessedwith6, thank you, as always for your support. We're lucky to "know" you.

I would love to hear comments from those with "typical" children, or those that have been exposed to this. If you see a child in a wheelchair, do you feel pity and want to help? If you see a child having a meltdown, or is screaming during play, what is your first instinct? Is it to help or is it "get that child under control!"? I know what mine was before I understood this. Objective points of view are more than welcome! I think someone who hasn't had to delve into these solutions can be very valuable in keeping us grounded. We get so caught up and isolated while pulling the boulder to the hilltop that we lose sight of the world "outside".

desertmom, so many things you wrote about were also true for me. The amount of guilt I felt when I learned that Lily's difficulties were neurologically based and completely out of her control (and we had been punishing her for some of these) was unbearable. Lily has SPD, NLD, GAD (anxiety) and possibly CAPD. I too wondered if her disorders had been caused by the infection I had 2nd trimester or preeclampsia in the 3rd, or genetic. NLD is generally thought to be caused by either a lack of or damage to the myelin (white matter) in the brain. Her father has an LD, although he was never specifically diagnosed, and he definitely has a lot of sensory issues! It really pushed his buttons when all of this started because all he could think of was how much he hated school and how stupid he felt being separated from regular classes. There were quite a few arguments about what therapies we should try and whether we should even seek help for Lily. There was no question in my mind about what to do. It was just a matter of finding the right help. Like your son, Lily appeared "normal". There are quite a few people out there who think I'm nuts when I try to tell them about Lily. We received her diagnosis when she was 5, so I'm grateful for that. Most NLD kids aren't diagnosed until 7 or 8. Also, like you, I wish I would have found out sooner. The earlier the intervention, the better the outcome. I finally got over the guilt (mostly), have more patience and understanding for Lily and her needs, and am better at communicating with DH about it. I'm still learning to deal with friends, family and her teachers who don't quite get it. I sometimes think about writing a handout to explain why Lily does this or that, what she might need help with, and the things that she is really good at! I think some people might find that weird, too! Instead I'm focusing on the gift that Lily and her sister have been to me. They both amaze me everyday, and I'm so glad that I realized this and stopped wasting time wishing for a different situation.

Monkeysmom, so eloquently put! You are voicing exactly my feelings. I have a few questions, so please pardon my ignorance: what are the acronyms NLD and CAPD?

I know SPD is sensory processing disorder and GAD is general anxiety disorder (could you please tell me some of the symptoms for GAD in a child so young?).

Thank you, and boy, do I agree with you on the handout! I actually thought about talking w/ds' class about why he is different, but the therapist thought that could single him out even more, and she is right. It just breaks my heart when he gets teased for being different in his actions. They need patience, too. Hey, I need more of that!

Desertmom, thanks! NLD is non-verbal learning disorder, which is misleading. It should be called an information processing disorder. Lily's verbal skills are exceptional which causes many people to doubt that she has a learning disorder at all. CAPD is central auditory processing disorder. We don't actually have that diagnosis, but she is currently seeing a language therapist and participating in The Listening Program. I have seen improvements in her ability to focus, function more independently, and is less sensitive to various sounds and loud noises.

One of the first symptoms we noticed was picking at her cuticles at around age 2! Her pediatrician mentioned that it was a possible symptom for OCD in kids, but nothing else clicked with that. Other than developing different "fears" (which we now know aren't really fears) there really were no other signs until she started kindergarten and began frequent urination . . . needing to go to the bathroom every 10 to 15 minutes, becoming upset if she couldn't go to the bathroom before leaving the house or leaving her classroom, etc. After ruling out any possible physical reasons, we were referred for a pysch eval. I had already starting reading about SPD (walking on her toes!) and knew that there quite a few things going on with her.

ok as a sister of someone with high functioning autism. You did nothing. Your DH did nothing. My sister was born to a my parents who were 23 and 25 I think. They are trying so hard to find a cause. Like when they said it was the MMR shots, my sister was autistic before she received that shot.

Remember to take the stand and treat your child like he is normal. He will function and learn so much in life.

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Casey loving wife to Steven mom to 4 bratty girls Amanda, Rebecca, Jessica and Makayla
Where did my baby go