Monday, December 30, 2013

Why Do You Keep Telling Me You have Autistic Kids?

This is Eric (MaryBeth's husband) and I have had a lot on my mind lately specifically about raising children with autism, and as it is the Christmas Break, I've had a lot more time to spend with our two boys, so I got permission to do a guest blog post on MaryBeth's page, because this post wouldn't really fit in with my blog.

For the past year or so when I've been catching up with old friends, or meeting new people through my work one of the first things I tell people about my family is that I have two autistic sons. I remember before we had children with autism I didn't understand why people felt the need to tell me they had children with autism or other special needs, but now I think I'm starting to get it.

Possible Reason One: Networking

A couple of years ago I was having a stressful time with school and work and doing some volunteer things for our church. It was a very challenging time for me and I remember snapping at some people because they were not doing what I thought they should be for a certain project. One of the men I snapped at called me on the phone and we started talking. He wisely asked me what else was going on in my life other than the project we were working on. I told him about school, work, and about just getting the diagnosis for autism for Matthew.

He paused for a moment on the phone and said, "I know exactly what you are going through. I have an autistic son who is now 20." We talked for quite a long time, and after our conversation we had found some common ground and he became one of my biggest allies in getting that project successfully completed.

I have had similar situations with my work as a teacher. I work in a cyber school, so I don't see my students, and they are from long distances away. Sometimes I will call a parent and ask about their student and I recognize the tone in their voice when they tell me their child is autistic. They often sound tired, frustrated, and at the end of their rope, and I can completely relate.

It is wonderful to have other people understand where I am coming from, despite the differences in the spectrum of autism there are also so many similarities. There is a special connection between people who have things in common.

Possible Reason Two: It's All Consuming

This is something that is really tough to understand if you are an outsider, but I'll try to describe a typical day or part of one, and see if it makes more sense:

Emma at 5:

"Emma, it's time for school. Brush your teeth, get dressed. We're leaving in ten minutes."

"Okay dad."

Then Emma would brush her teeth, get dressed and be ready to go out the door for school.

Matthew at 5:

One hour before he leaves for school, he walks past the bathroom and comes into our room. We remind him that he needs to go potty first thing in the morning, and he goes back to the bathroom, then returns to our room. He needs help snapping up his pajamas. Then he gets into bed with us for a morning snuggle. If it is too short he will be cranky all day long.

Then we have breakfast, usually the same thing each day, but if he sees a sugar cereal, or an apple, or candy, or anything left out from the previous night (cookies, cake etc.) it's a meltdown, and a repeated request for that kind of food for about a week. He needs to eat at the counter because he will not eat what everyone else eats, and if another child finishes eating their 'healthy' breakfast and grabs a sugar cereal we have another meltdown. Some days he wants someone to sit next to him or he won't eat, if that happens, the entire morning routine is thrown off. Assuming everything is put away, and we have an event free time, we get him breakfast without a hitch we move on to getting ready for school.

We still need to brush his teeth, pick out his clothing, and dress him. If he has his mind set on a certain pair of socks, underwear, shirt or pants, we play a guessing game amidst various forms of pointing, signing, and some attempts at speaking. When he is dressed, teeth brushed and suited up for whatever weather there is outside, and we get him out the door to his driver. If the driver is more than two minutes late meltdown time, and fight to get him into the car.

And thus it is for every aspect of our lives. What most kids grow out of, we face daily, what most kids do for themselves, we do for them, what most kids will eventually catch on to, ours might not, what most kids can understand, we have no way of knowing if he gets it.

Real Reason: It Defines Me and My Family

Being a parent of an autistic child defines who I am more than any other part of my life. It consumes more of my time, energy and attention than anything else I do. Almost every decision we make, every daily activity, every trip to a therapist, every plan for the future focuses around autism.

So the real reason I say I have two children with Autism, is not to get attention, or make you feel bad for me. Although I love finding other people who I can connect with and get great ideas from, it's not even to network out to others.

I tell you this because it is who I am, more than a teacher, an author, or anything else I do in life. I am a parent of children with autism.

Tuesday, December 10, 2013

Not 1 but 2!

So I am a terrible journal writer. I had great intentions of keeping up on this blog to be a motivation for others who might be struggling with the same thing and to help myself. Life just gets away from you and sitting at the computer typing out my biggest struggle in life is not top on my priority list (but maybe it should be higher).

When my husband and I were first married and talked about the size of family we wanted to have we both agreed that 4 kids sounded like a good number. We both come from families of 4 children. I get very sick when I am pregnant so after Matthew my number then became 3. I felt like I couldn't do it again. I was also dealing with a screaming and crying all day child who was very dependent and having problems. Well Heavenly Father had something else in mind for me. (Now remember in a previous post I mentioned being religious.) This next thing that happened in my life I firmly believe was God communicating with me.  I was sitting listening to a talk from a church leader and I HEARD in my head, "You need to have another baby." And ignored that voice and kept on listening. I did NOT want another baby! I was barely holding it together as it was. That whole weekend that thought would not leave my head, and I kept on telling it to go away. Finally after a couple of days, I was having almost a non-stop bombardment of thoughts of baby. So I decided to talk to my husband about it. He was surprised, but said well let's pray about it together. We did and we both felt like yes we were supposed to have another baby. As I was kneeling in prayer I said to Heavenly Father, "but how can I do this! I have such a hard time when I am pregnant? I have this 18 month old that is draining the life out of me physically and emotionally! I have a 5 year old and a 3 year old to take care of! How can I do this?" And the answer that came back was, "this child that will come into your family will bring balance to your family. Just like you did with your family." (A story there, but to make it mom was told by the Spirit that same thing about having me, and I did bring balance to my family) So after hearing that I had confidence that everything would be alright. (Now my alright and God's alright were two totally different things) I got pregnant like 2 weeks later and it ended up being my worst pregnancy. But we had our little Andrew with bright red hair.

Andrew was an amazing baby! He ate well, slept well, rolled over on time, crawled on time and walked on time, happy all the time. He was just this awesome little baby.....until he was about 18 months old.  Since Matthew is autistic and has a severe speech disorder I was very acutely paying attention to Andrew's development. He was making good eye contact and physically developing just great. But he wasn't speaking at all, not responding to sounds, and fiercely independent. So I called up Early Intervention and got him into services of Speech Therapy by 18 months old. We were actually concerned that he had a hearing problem (not autism). So we went through the whole array of hearing tests. He failed a few, got tubes in his ears, and then still had inconclusive results. So we had to do a sleeping hearing test to get very accurate results. That was a nightmare experience which I could write a short story on, but the results came back: Perfect hearing! We were devastated. What perfect hearing? Then why can you scream at the top of your lungs right next to him and he doesn't respond?

Here is a sort of paraphrased conversation I had with his ENT.
ENT: "His ears work just fine, but it's not connecting in the brain. You should get him tested for Autism."
Me: (in my head AUTISM????) "No I have a child with autism. He isn't anything like him."
ENT: "Well there are lots of forms of autism. I would be happy to help you out with whatever referrals you need. Have a great day!"
Me: "Thanks."
And I walk out of the office feeling completely confused and deflated.

Then the inner battle began. I was trying to figure out how could he be autistic? He developed physically just fine, he makes eye contact (at least he used to...), he CAN'T be autistic God promised me ANDREW would be balance to this family, not more stress! And so on and so on. I had a lot to learn about myself and my expectations in life (and especially that balance and stress are not the same thing). To kind of wrap up Andrew's story to his diagnosis. I did a bunch of research and still didn't think Andrew was autistic but instead I thought he had a processing disorder. He very much reminded me of a friend's little boy when he was Andrew's age (so I talked to his mom and sure enough he has a processing disorder). So I thought: I'm not waiting 9 - 12 months for a Developmental and Behavioral Pediatrician! If he has a processing disorder then he needs to see a Pediatric Neurologist. And so that is the route we went. About 20 minutes into our appointment the Neurologist told me, Andrew is autistic. I said well what about a processing disorder. And he said well processing disorders now fall under the umbrella of autism. He was very impressed with Andrew and said that he is going to accomplish great things in life. I left that appointment kind of stunned. And trying to figure out what do I do next? By the way, at this point Andrew just turned 3! 18 months of trying to figure it out.

How did I feel then? Confused and sort of annoyed that I had 2 kids with autism. And then the questions and concerns for the future started bombarding my head. But we had an answer and it gave us a little bit of clarity as to what was going on in Andrew's head.

I will share more of our adventure with Andrew in a different post, but that is how we found out we had not 1 but 2 children with autism. And so the journey continues.