Autism – My First Story

Before He Was Born

I went out into the waiting room of the dental office I worked in. My scrubs were getting a little tight around my midsection as my baby bump expanded. I called the name child I was to see next and a boy stood up with his mom and follow me to the room I worked in.

When the boy sat down, his mom asked him if he would like to tell my about himself or if she should. He was capable of speaking but did not make eye contact with me. He told his mom she could tell me. His mom went on the explain to me that her son had autism, and explained some of his odd behaviours and things he may have trouble with.

As a mom-to-be my heart ached. I was 19 years old and knew nothing really about Autism. While I typed up him chart, I said a silent prayer that God would protect my unborn child from Autism. God have very different plans. Little did I know I would be getting the crash course in Autism very soon.

I’ll never forget the day we got the diagnosis.

The A-word. I felt like someone ripped my heart out of my chest and stepped on it. When I mother hears news like this the emotional pain is so intense it can causes her physical pain. My stomach turned and I fought having to excuse myself to get sick.

No, this couldn’t be happening to my son. I argued with the Development Specialist. I had so many reasons why this was not the case. “But he makes eye contact with me! And he loves cuddles and kisses! Children with Autism don’t do that!” The doctor looked at me sympathetically and tried to tell me, “He has lots of strengths and the spectrum is so large. Each child is different.” I was in denial, I demanded more test. In the end of course the test supported the doctor’s diagnosis. There was no escaping it, no matter how it looked to me, my son had Autism.

I asked the Doctor the day we went back and got the official diagnosis, “Well, but he’s going to be alright, right? I mean we’ll do the treatment and he’ll live a normal life.” She flat told me, “I can’t promise you that. Like I said before he has a lot of great strengths.”

I Kind Of Knew

While a part of me was in shock, another part of me wasn’t all that surprise either. I had a watched Jenny McCarthy on Oprah a few months early talking about her son’s battle with Autism. For some reason I felt compelled to go online that night an order her book. When it arrived and I started to read it, I could not put it down. While my son did not have the same medical issues that Jenny’s son Evan had some things she wrote were hitting close to home. But at the time I was still in denial. I called my mom and told her about what I read, and how everything hit so close to home. She agreed that it sounded similar, but we also agreed that he just couldn’t have autism. So this diagnosis came as a shock to them too.

The A-Word

The A-word as I called it consumed my life. My ex and I fought, he thought our son would just grow out of it and I had condemned him by “allowing” him to be labeled. I knew that if I didn’t allow him to be diagnosed he would not receive the services he needed to get better. He accused me of a lot of things, he thought I “allowed” him to be diagnosis so I could get more money from the government. He said I ruined his chances to ever get into a private school. So many hurtful things got thrown in my face. But I had to stand my ground.

My son needed help, and no matter what I was going to get it for him. The extra money that the government was giving me did not come even close to helping cover the cost of treatment or time I had to take off of work to get him said treatment. So I it wasn’t for the money that I allowed them to diagnosis him. It was for the chance to get treatment to help him out of his own little world into ours. I can see now looking back, my son’s dad was just as scared as was. Once we got going with therapies, he came on board for most of them.

Research Consumed Me

I spend many hours searching online, looking for hope. Dishes piled up, so did the laundry, but they were not important. Finding the answer to help my child was. I worked all day, came home, took care of my son, and once he was in bed I was back online. I needed sleep, but I thought, I’ll sleep when I’m dead, my son needs me to figure out something!

One of the purposes of this blog is to provide parents with information on alternative therapies available out their for their child with autism, and our experiences with them. I hope that I can help navigate parents to things quickly so they can decide if it’s right for their child. So they can spend less time searching and more time helping their child.

This Blogs Take Away

The important thing to remember is, “If you met one person with autism, you have met one person with autism.” Each child is so different, so if one therapy does nothing for your child, DON’T GIVE UP! That’s just not the right one for your child, it doesn’t mean another treatment won’t work. It is all about trial and error.

I got a message last night from my friend, “Did you watch Dr Phil today?” It was 11pm when I saw the message and things were very busy all evening in our house, so I just shot her a message back saying “No, but I have it PVR’d.”

Then I got a call from her this morning. She told me I had to watch it, because it was about a woman who tried to commit murder/suicide. She couldn’t handle her autistic child’s violent attacks on her younger daughter, she felt had no resources available, so she tried to take her daughters life and her own. 

She also told me, “I get it. I would ever kill my autistic daughter, but I get the extreme hopelessness when your autistic child is beating the crap out of your younger child.”

So when nap time came around today, I watched it and I had so many emotions running through me. I knew as soon as my boys were down for the night, I would be watching part 2. 

After watching both shows I felt for this mother who felt this was her only answer. I don’t believe it was the right answer, nor could I image myself ever doing the same to my child. However I don’t lay the blame in her lap, or her husbands. I blame the medical system and the government. When parenting leaves you with brain injuries and Post Traumatic Stress Disorder there is something terribly wrong. 

Parents are left to the wolves on long waitlists. They don’t have the skills to deal with these situations or the resources. Anything worth doing with children with Autism either has a REALLY long waitlists that you can age off, or a huge price tag. Insurance companies cover some cost, but just as it starts working, you hit your max for the year. Which seems to be what happened to this family on Dr Phil. 

When I found out the waitlist that my son would be placed on I remember speaking to Wes’s service worker supervisor. I told her, mark my words, some poor family with no resources will snap under pressure and a child will be hurt. Little did I know, this had already happened. 

I have been blessed to have found alternative therapies that are working amazing for my boys. Early Learning, naturopathic/homeopathic therapies, diet changes, NAET, ABA therapy, just to name a few. But I should also mention, this puts saving for our retirement, family trips, our children’s educations, etc on the back burner. These therapies help and they are worth it, but the financial burden on the family is extreme. 

However, I have hope. My boys are amazing children. I know in my heart all our efforts are helping. I know in my heart my boys will be awesome members of society. I know they will have careers, and wonderful lives. I pray everyday they will find love and have families of their own. 

I have hope. I don’t care if the debt keeps adding up. I will find the money to keep fighting. 

After watching these two episodes, I hope Dr Phil can help everyone involved. I hope he can raise awareness. I hope we can start finding answers. I also hope that the people in power can look into these alternative resources and treatments. They have been life altering for my family. I wish they were available to everyone. 

So my opinion, Kelli(the mother in this story) is as much of a victim of autism as her daughter Issy. So are Issy’s siblings and father. Lets hope though that through this and with the help Dr. Phil offers, they can be no longer victims, but survivors.

What does a parent do while they are wait for ABA services?

Here in our part of Canada ABA services are covered by Manitoba Health. While this is awesome because most US residents have to pay thousands, if not hundreds of thousands a year.

This is a wonderful blessing! However, the only downside is the long, long waiting list. Right now people are looking at 18 months to 2 years. IF you child does not age off the list at 5 years old. This is very stressful for parents, and it wasn’t always that way. Back in August of 2008, I signed up then 3 year old boy up for the program and his first visit with his ABA Senior tutor happened in January of 2009. 5 months. That was it! Totally doable for anxious parents. However this time around I signed my youngest up for services in February 2014, and we will be LUCKY to have our first visit in September 2015. 19 months. More likely January 2016, 23 months. Terrifying for an anxious parent. 

Sad part is ABA is most effective if started EARLY. Hence the title, Early Intervention. So parents CANNOT wait for services. Since the government doesn’t seem to understand the seriousness of this, parents have to step up. This can be so scary for parents who have not been through this before. So I decided I HAVE to blog what we do in our home. Now while this might not apply to your situation, I’m hoping the resources I mention might have things that can help you. 
The BIG Book of ABA Programs :I call this book the ABA bible. It has a program written for each step of the ABBLS-R.
“The BIG Book Of ABA Programs After the ABLLS®-R has been completed, educators and parents are often left wondering how to transform the results into empirical IEP goals and quality ABA training programs. With the BIG Book of ABA Programs those concerns are a thing of the past. Each detailed program can be used with dozens of different children. Each program contains specific instructions for data recording and implementation for baseline and ABA teaching. Each program is customizable for different children and their unique settings, teachers, reinforcers, and steps pertaining to each program. Benefits Why pay a behavior analyst to write your programs? Why spend hours writing your own? The BIG Book of ABA Programs contains more than 500 precisely written, photocopyable, ABA program protocols for every teachable step in the ABLLS®-R. Each of the more than 500 photocopyable teaching programs contains: A well-written IEP and program objective A complete baseline implementation”

This book will help you get ideas of things you can do now to help your child while you wait for ABA services to start. 

I highly suggest buying an 

Assessment Kit for ABLLS®-R, with Manual from Different Roads. 

I wish I had know about it when Wes went through the program. 

I dreaded every clinic meeting because I knew I would be given a list of items, pictures, etc to find. And that program could not be started until I did so. So I spent thousands of dollars on dollar store items, ink for my printer, photo printing, things from the teachers store. Not to mention hours of time on the computer finding said pictures, and gas driving from store to store. I can’t image how much easier it would have been to say, “Lets the bins and see what we have.” Then been able to start the program that day! Instead of waiting till the next time the Senior tutor or Consultant came. 

I was talking to another ABA mom a few days ago. When I told her about this kit that I had bought for Z, she told me she wished she had know there was something like this available for parents, she would have likely made the investment too.

And lets say this is not an option for you to purchase outright, right this second. I highly suggest figuring out how many months you have on the waitlist, subtracting a few months in case you get in early, and figuring out how much money you have to put away each month to buy this kit. But if you can swing getting it ASAP, you will have more tools in your pocket to start working with your child NOW.

You might be thinking, there is no way I can run a 35 hour program on my own. I don’t have the money for that kit. I work full time. Remember, every moment you work with your child it will pay off. Making time during meal times, before bed, in the car to daycare, every moment counts. So don’t give up because you can’t put in 35 hours a week. Yes 35 hours is the best. But 5 hours is better the zero hours.   

Activity Ideas:
– Verbally label everything.
– Do house tours labeling what each item is. 
– Make large clear written labels for things around the home. 
– Count everything. 
– Practice dressing skills. 
– Playing with Shape Sorters. 
– Puzzles

Flipping through The Big Book of ABA Programs will give you ideas on what skills your child might need to work on. 

Another thing worth suggesting is to start following through with everything. This is one of the hardest things for me to adjust to when my oldest was in ABA. Sometimes after a hard busy day, its just easier to give in. If you start following through with everything now, this is one last adjustment you and your child will have to make. 

Waiting for services is so frustrating. Trust me, I know, I’m there. But don’t let your child rot waiting for services. Everything little thing you can do with them now, is one less thing your ABA term will have to do. Leaving them able to focus on the really tough stuff.

Also check out BrillKids programs. They are such a power tool as well. They work on labeling and reading at the same time.

Good Luck on your journey!

What resources did you find helpful while you waited for services?