Finally hearing it from someone else my husband was able to look at our son and see it and believe it.
That day sent us into a complete tail spin, the amount of conflicting information on the internet was staggering. We didn't know who to call or what to do. Suddenly all the plans you have for your life; all the scenarios you've played out in your head about being a parent are gone. The anticipation of baking cookies with your kid, doing arts & crafts, building a model plane, hearing about their first day of school, playing basketball with him, first girlfriends, high school graduation, marriage, grandkids, it's all just GONE! There's a big black hole, you can't breath, you are sick to your stomach, can't think straight and it almost feels like you've lost someone. You begin to grieve and YOU GET ANGRY and you get sad and you feel like you're in a bad movie that you can't escape from. You're full of self pity. You have no one to talk to who understands because you don't even understand it and since you can't take it out on your child, you begin to take it out on each other and your marriage.
The worst part is that the person you are the most angry at is yourself. As a mother you instantly think that there must have been something you did wrong during your pregnancy and that this is somehow all your fault; your children are a reflection of you so when something goes wrong you are embarrassed and you feel like a total failure.
I didn't want to hear, "Oh he'll be fine, he's doing great." or "Supposedly there's all sorts of help now a days" or "I know people who didn't talk till they were 5" or "He just needs speech therapy".
I needed to hear, "We're so sorry, we can't imagine what this is like." or "What do you need? How can we help?"
We were bursting with this burden but no one wanted to hear about it. They still don't, it makes people uncomfortable. I can post the dumbest thing on facebook and get 30 responses but if I post anything serious about Autism or Zander and our life, people won't even read it, they don't want to hear about it.
Imagine your whole world comes crashing down with one word and at the time you need people the most, they fight with you over it and turn their backs on you. I can't tell you how many family members we had to fight with for months who refused to believe what was going on. Here we are drowning and basically wanting to drive off a cliff and people are yelling at us and telling us that we're crazy and we need to do this and we need to do that. I had a friend who's boyfriend did not want his perfect son playing around ours anymore as soon as I told her he was Autistic. I mean seriously people Autism is not contagious, and the best part is that people are concerned that their typical child will pick up bad habbits from Zander and he's usually far more well behaved than they are in the first place!
It took about 6 months for everyone to come around but then they all went to the other extreme and suddenly everyone we knew was an expert on Autism. "You need to see this therapist, and go to this school, and this doctor. He needs to be on a gluten & casein free diet. You're not doing chelation are you? You did have his hearing tested right? I don't think you should have the therapists come to your home you should put him in special preschool." The oppinions went on and on and on and we realized everyone was just trying to help so we just let it all pass through one ear and out the other.
We knew that we were doing everything we could possibly think of to help him and that's all that mattered at the end of the day. The best advice that I can give to any parents that are newly struggling with Autism is to follow your gut on everything. Take what everyone says with a grain of salt and believe in your ability to make the right decisions for your child because that's just it, he or she is YOUR child, not theirs.
Let me also tell you it does not help having doctors and therapists say things to you like, "You know he's still your child and you still need to love him regardless." (This girl was maybe 20 years old with no life experience, no children of her own and I swear to God I almost punched her in the face) or "You need to prepare for the possibility that he will end up in an institution" or " He will probably never show any empathy or compassion for others" or "A good portion of these kids never talk and are never potty trained" or my personal favorite, " A lot of cereal killers have Autistic characteristics." (Really? Does that really need to be said to two parents who are already barely holding it together? I mean Dexter is one of my favorite shows but come on now, give a parent a break!)
You'd think if your doctor is going to say I think your child may be slightly Autistic that they would then say so here's what you need to do.... step1, step 2 etc... NOPE you're on your own. It is absolutely dumbfounding the lack of knowledge/training and most importantly the lack of compassion that the medical field has of/for/about Autism. I finally found the Lillyclaire Foundation on line and called them... they never returned my call. I called the school district... they never returned my call. I joined all of the Autism organizations that I could find on line but their sites are so overwhelming you can't stand to be on them for more than a minute or two.
The internet is also crowded with information about, bio-medical treatments, hyperbaric oxygen tents, gluten free diets and ads for dvd's that are supposed to get your kid talking. From weighted blankets, isolation tubes, special clothes to snake oil, you name it, it's on the internet and it's linked to Autism. Everywhere you look their are people trying to make money off of it. The supplement companies and natural food dealers are no better than big pharmeceutical companies. Anything remotely associated with Autism or well living is marked up like 300%. We spent months and a ridiculous amounts of money panicking over the right bacon or laundry soap.
When Zander was about 20 months old a friend of ours called (THANKS BILLY!!!) and said that an ex girlfriend of his worked with Autism families through the Sierra Regional Center and through her we then found out what steps 1,2 & 3 were actually supposed to be.
We'd seen countless articles on the costs of Autism and were relieved to find out that there was a little financial help available but in order to apply you first had to recieve an official medical diagnosis which you could get 2 ways: You could go through the Lilliclaire Foundation which had never returned our calls or you could go through the states Early Intervention Services also known as NEIS.
Keep in mind that all you hear after you are told your child is probably Autistic is that Early Intervention is EVERYTHING, the key to any success your child will have in the future.
We called NEIS and it took them a MONTH to come out to our house at which time they were not allowed to diagnose anything, just make observations. They spent two hours asking questions about our child while "observing" him. We were told it was their finding that Zander was developmentally delayed in the area of communication and they would note that parents have possible concerns for Autism. In order to do the Autism Evaluation we would have to bring Zander to their clinic and he would be formally evaluated by a team/panel of therapists. The catch... they're only allowed to schedule 2 evaluations per month and there's a waiting list and they admit that even though legally they are required to see and evaluate your child within 45 days of your call... it just was not possible. We would have to wait until May, ANOTHER 6 MONTHS! (Early Intervention my ass!) That's not even the best part...their evaluation is not a diagnosis. Once you get the evaluation done then you get to make an appointment with the states pediatrician for the official diagnosis another month later and NEIS only provides services up til the age of 3. So they weren't even going to diagnose him till well after he was two so he wouldn't even get a full year of help.
As it turned out there was a cancellation and Zander's evaluation was moved up to February and his diagnosis to March. We asked the states pediatrician who was/is supposed to be an expert on Autism about ABA therapy. She promptly wrinkled her nose, shook her head and point blank said that it would turn our child into a robot, that it was essentially dog training and that it was really only good for Asperger or super high functioning kids and that we should let Zander be himself and look into Floor time instead. (Greenspan's Floor time is a play based therapy where you let the child direct where things go.Up until recently they also did not have any official data to back up their claims; it is my understanding that they are currently in the process of conducting a study on the program)
Even with her negative view on ABA we left her office feeling like finally help was on the way! We could not have been more wrong. After just a few weeks of working with the state we knew we had to do more so we did look into ABA (Applied Behavior Analysis) at the University of Reno. We met with the Director of the Behavior Analysis Program. We sat down with him and he promptly reclined in his seat, put his feet on the table, his hands behind his head and said, "So, why are we here?" I could feel my husbands grip on my hand get a lot tighter and I instantly knew we were again wasting our time.
This man proceeded to tell us that we would need to answer all sorts of personal questions about our marriage and finances because they didn't work with broken families and wouldn't have any interest in working with any family that would take out a 2nd mortgage or sell their home to pay for therapy. If after this meeting we wished to proceed and we passed the marriage and finance test then he and his team would meet to decide if we would be a good fit for the program. He made a point of stating that families had to be invited to work with them, that it was a privilege." (A $3,000.00 per month privilege at that) UM CAN YOU SAY GOD COMPLEX, MONEY HUNGRY, DOUCHE-BAG???
We walked out of there got in the car and literally both said, "That man can go f himself!" We just wanted to help our kid for Pete's sake. We looked into private therapy with a few BCBA's (Board Certified Behavioral Analyst), one wanted $200/ HOUR. We both felt like we were on Candid Camera, the situation just kept getting more and more ridiculous. There was not a day that went by that we didn't pray for help and guidance and eventually we met the S Family. That's when everything changed!
