Sunday, July 26, 2009

not because they are easy, but because they are hard

There certainly are challenges to life. There are some we don't understand, and some that we procrastinate, and others we are just in denial over.
My son has autism. We are blessed. He is very high functioning...almost categorically Asperger's, except for he had communication delays as a toddler that he has now outgrown, with no need for any speech therapy.

If you want the honest truth, here it is.
I always joked that Ethan was a genius. A baby book I once read had a short page on traits of gifted children. Ethan had a sense of humor as an infant; he was hysterical when I had a towel on my head after a shower. He slept through the night, but otherwise never slept much. He was always in constant movement....always! Still, we never truly thought anything of it.
So many people were always there to tell you something was "normal". We used to find it funny that he would line up his cars and get aggravated if all the fronts lined up but then the backs didn't and vice versa. We were seeing this at 2 and thought nothing of it. He would have 3 hour tantrums...I thought this is what the terrible 2's were all about, and that he was particularly stubborn. He would point and grunt versus talk. And even when he started talking he did not speak sentences with his peers. All this I was told was normal for a first born, for a boy, etc.
I remember trying to potty train him and this was challenging to say the least. It was obvious he had the control (he would hold it all day and wait for a pull up at night over going in the potty). People said, some kids take longer to potty train.

Finally, daycare at 3 1/2 called us in to our 1st parent teacher conference, that they assured us was normal, incinuated Autism. I knew the assistant director had an autistic child, and I felt like she was projecting on us. It was our first time EVER to get feedback on our child in such a negative light. I was heartbroken. I felt betrayed that this place that cared for him over 40 hrs a week, had nothing but complaints about him.
However, we followed their instruction and went to the Child Development Clinic. The doctors there asked me a series of questions. These are so vague, especially if you are a parent in denial. Does your child make eye contact? Yes. Does he obsess over one object? No (he liked cars, what little boy doesn't). Did he talk at 2? Yes.
I was told it was more of a parenting issue than a problem. If anything, when we started school they may find him to have ADHD. That was that. And I left feeling so satisfied that I had won the battle with the daycare, that my son was fine, and they were just incapable of dealing with a hyper child.
We left that daycare. Within 6 months, he had gotten kicked out of the next one. Then the next one kept him, but said he was definitely not "like the other kids". They had found methods to help, but Ethan was obviously a struggle for them. In our defense, during this time, my husband and I were working full time. Our time with the kids was between 6pm and 7:30pm everynight. And the weekends were so jampacked with laundry and errands, that there was never any pressure or expectation. His tantrums to us seemed like stubborn Ethan.
Well then he turned 5. By then we had to switch daycares again, to get one that could do afterschool care. We thought we should start the summer before because Dad was starting to go out to sea again for the 1st time in 3 years. And we should just get him settled sooner than later. This was a set up for the Perfect Storm.
I would get calls that he was kicking, screaming, and banging his head on the floor for no reason. He would pace in circles. It was obvious whatever was wrong, could not wait until school could evaluate him. We took him back to the doctor. This time, they referred us to the autism team. There they not only asked the questions, but asked them more in depth. Not only, "did he speak at 2?" but also "did he progress like his peers?". This changed everything. And by 5, we knew certain behaviors, like tantrums, were well out of normal range. They observed him and said, "yes, he makes eye contact, but he looks away is not natural for him, it is learned". He was diagnosed with High Functioning Autism that day. I remember leaving the office happy! You might ask, how could you be happy? At this point, I had not heard a positive thing about my son in 2 years. Even my Dad once said, his eyes look dead. It was obvious Ethan was not a happy boy, and it was really obvious there was something wrong. We were happy, because someone could tell us what it was....we had an answer!

Then I found out the most surprising thing EVER! I had heard of Autism a ton. At the time it was in the news a lot. A Lot of talk about it being 1 in every 200 boys having it, and a lot of talk on research agencies, awareness, fundraisers, etc. What surprised me, was no one knew anything or could make it better! A doctor could not prescribe anything. We were not directed on what to do during a meltdown. We were told to get into ABA Therapy and sign him up for an IEP at school. This process took from October to April of the following year. The school followed everything to the letter of the law (they have time ranges to complete each part of an IEP). However we could not get approval for ABA therapy until an IEP had been made.
I remember thinking if I went to the doctor and said I was depressed, they'd have me in therapy within the month. Here is a child with autism, and nothing was done for 7 months.
Ethan began therapy, and the place seemed fantastic. However they felt he didn't really need therapy. They felt he had all the coping skills he needed. The school constantly complained about the traits in him that exemplify autism, and I felt could not be changed, and if they could, I had no idea how to fix it. I felt the pressure of not doing enough, but no one told me what to do, no one seemed to be able to help. The people that saw the flaws couldn't fix it, and the ones who maybe could, did not see the flaws. I thought that was how it is.
I thought this is as good as we get folks. Unfortunately for me I have now developed a daily fear of my son, and what to expect from him. He is extraordinary in so many ways, but yet I struggle to find the good points in him to talk about. He is so rational, he is irrational, he is stubborn, rigid, difficult, constant work, constant questioning, and physically a threat to himself and others. The meltdowns do not happen that often anymore. However he has issues controlling his anger, he gets frustrated easily, has crazy hyperness highs, and he whines ALL THE TIME!
I should add to all of this, we are a military family that just had a major move, and my husband has been home a total of 18 weeks out of the last 60. The longest time home being 7 weeks. This is not condusive for an autistic child.

So what's up with the title? I know we have services available to us. I met wonderful people with a new ABA firm, that seemed to understand the things he does is not normal, and we can improve. I met these people 3 weeks ago. WHY haven't I called???? I am scared. I don't know why. I tried thinking really hard, why? I was scared to have people see the bare naked truth of how we live with avoidance daily. I do everything in my power to stop the whining, the meltdowns, the fighting, etc. I am tired, and there is a better life; I know better, and I am ashamed that we haven't gotten more help. I am scared to show that I do not want to change. I know we need to, but it is hard.....what if there are charts, what if they don't want me to avoid meltdowns, etc? What if it gets worse before it gets better?????
I need to do this. I need to get him help, as he is regressing quickly and steadily. My 7 year old is having poop accidents because he doesn't like any of the 3 toilets in the new house. The 2 upstairs have exhaust fans and the 1 downstairs 1 time had a spider. So he holds it in until he can't. He lashes out at his sister, and maybe as he gets bigger won't be able to stop himself. Afterall, he has no empathy for the pain he causes her. He understands when she hurts him, but can't understand that he does it to her.
So I am reaching out. We are getting the wheels in motion to help us as a family. We need to heal ourselves and better ourselves. If we leave Hawaii with nothing else, than being a stonger family, with our lives in place, than how could I ask for anything more.


  1. chica ... once i get past the "WOW" ... that was incredible, honest & (sorry for the cliche) straight from the heart. You're obviously a whole lot stronger than you think you are.

  2. Praying for your family. Coming from a Mother and a Navy wife who raised a bipolar child (and didnt know it until he was a teenger) I can feel every word you wrote! You said it all so well.

  3. Deb - Hey, I give you all the credit in the world! It is "normal" to be scared, but if you don't seek the help you need, nothing is going to change. I wish I could help you, but know I have 2 shoulders if you need them!

  4. my mum wanted me send you this & she couldn't post it herself ...

    My daughter, Laura, told me about your blog which I have just read.What an amazingly honest post .. I was a health visitor now a personal development coach and I am sad to think how often i have heard that story. That doesn't help you but find someone who can while you are on this journey with your gorgeous son. I remember working with a peadiatrician and this is a hell of a long time ago who told us to look at what a child can do rather than what he can't. And Laura's right you are courageously honest to put that out there for the world to see. Ann

  5. Thanks so much for the support. You'll be happy to know as of today, the ball is rolling on getting him back into therapy, and I have a meeting with the people for Respite care this week.
    I support Autism Research and care, because regardless of awareness, I think relatively few know, how little knowledge there is on how to treat it. And I'd also like to add how incredibly lucky military members are that Tricare covers this!! Most Insurance companies do not, and the therapy is in the $1000's per month.
    I just know everything will get better.

  6. I'm sorry I didn't read this sooner. I think it's awesome what you are doing. It's difficult to look inward and really connect our personal feelings and fears to our decisions, especially when they affect others. I'm so glad things are coming together, and I really hope Hawaii turns out to the perfect place at the perfect time for your family. You deserve it!