He doesn’t look Autistic: And other false ideas about Autism

Eric and I have been talking about what I could post next on the blog. And when he had time today he put into words what we have been talking about.  So here is Eric's post on some of our thoughts that might give people some more understanding.

Raising two sons with autism spectrum disorder (ASD), has helped me to see, in a very personal way, what ASD can look like. Before experiencing this for myself I had some of the same misconceptions that many people have about ASD. As I speak to people about this disorder I often get the same questions and I wanted to address those questions/concerns/misconceptions to help raise awareness and understanding. I also want to emphasize that I am addressing them from my limited personal experiences and not as a medical professional.

1.       He doesn’t look Autistic. In the grocery store the other day our son was holding something we purchased and the cashier saw that he really didn’t want to let it go. She was very kind and used the hand held scanner to add the item to our list. As we were talking we thanked her for doing that and mentioned that we might have had a meltdown if we tried to pry it from his hands. She looked at him and said the phrase that we’ve heard a bunch of times, “he doesn’t look autistic.” There seems to be an idea out there that Autism is something you can see. Although autism is diagnosed by a series of symptoms, they are also not always present. Some people with ASD might be very social and make eye contact with you, while others would have a meltdown in a public place, some may have repetitive movements like shaking their head, or rocking, while others will not. On good days our sons with ASD might act ‘normal’ for several hours at a time. Taking a glance or even a serious look at a child will very rarely help you know if he is autistic.

2.       My child isn’t autistic, he’s smart. First off, try not to say this to a parent of an autistic child, it’s just not nice. This is another misconception about ASD that I think originates from a lack of awareness of what autism is. Most people who say this are thinking about severe cases of autism. As clarification, autism has a huge spectrum that covers challenges including social, communication and behavior. Just because a person can’t speak doesn’t mean they are not smart, nor does the fact that someone can speak mean they have anything intelligent to say. In many cases people with ASD have a high IQ they just have a difficult time expressing what they know. It is very likely that we could learn a lot from people with ASD, if we could just figure out a way to tap into what they know.

3.       How can a diagnosis help? This is a great question that is often asked by those who have noticed some delays with their children and they are wondering if it is worth the work to get an official diagnosis. In some ways, having a diagnosis doesn’t help. There isn’t some magic pill or shot that will cure your child of ASD. But in other ways it can make all the difference in the world. We had two ‘normal’ children before having a child with ASD. The first almost three years with Matthew were frustrating, we tried everything that we did with our first two children and nothing was reaching him. The day we got the diagnosis of autism changed my perspective. When I knew he wasn’t like other children I changed how I thought and that has helped me be a better parent. I gained understanding and that made a huge difference. In addition to understanding, we have now been able to get support through our local school district and early intervention. The wonderful professionals we have worked with have given us so many tools to help Matthew. Some tools work, some don’t, but we don’t feel so alone, and that means a lot. It has also been shown that the earlier a child is diagnosed with ASD, the more effective the therapies are in helping to reduce unwanted behaviors.

4.       They just need discipline. This idea goes hand in hand with the ‘if they’re hungry enough they’ll eat it’ line of thinking. For “normal” children when they misbehave you can reason with them, tell them no, or take the “whatever” away for a while and the behavior will stop or improve.  However for children with ASD that is not how it works. For example, one of our sons draws on the walls. If there is a marker, pen, pencil, crayon or anything to write with left out he will draw on just about any surface. We have tried doing everything we can think of but at the age of almost 4 it still persists. The only way we can stop him is to put every writing implement out of his reach. For the past almost year, we get crayons down only when he has paper and we can monitor him coloring. We encourage writing on paper only, and his behavior is finally beginning to change. This example may seem extreme for any parent with ‘normal’ children, but for parents of children with ASD, this is commonplace, and the kind of thing we need to do for almost every aspect of our lives.

5.       What kind of future can I expect? I don’t know. For me this is one of the hardest questions. I don’t know what to expect for education, career, independence, or marriage. Each day I need to compare Matthew only to Matthew and Andrew only to Andrew. I have hope that all we are doing will pay off and they will be able to one day live independently, and be contributing members of society, but I have no idea.

Through our experiences over the years I have learned so much about ASD, and I know there is so much I still need to learn. I am so thankful for wonderful and supportive friends and family who continue to ask questions and learn what they can about ASD so they can better understand our children, and know how they can help us. I hope this post has helped. 

Completely disconnected

Probably one of the most challenging things for me about Andrew is how little he reacts to things. He really does almost act like he is deaf.  Below is a video of what it is like most of the time with Andrew. He just wanders around and doesn't listen to anything that we say. It is difficult because it's very frustrating and at the same time it's not his fault. 

I never really know what is going on in his head and he is often very violent. Along with this disconnect comes an emotional disconnect as well.  One of the most wonderful and precious things about being a mom is having your children wrap their arms around you and tell you that they love you or that they think you are the best, etc. With Andrew he asks for a lot of affection (when he wants it) but never gives it back. Every night I give my kids a hug and kiss and tell them that I love them. And every single night I get a blank stare or he turns away from me or at times he hits me. 

There have been 2 separate occasions that this was not what happened. 

One time he was being especially bad about going to bed and I was at the end of my rope. After the 15th time (it felt like, I really don't remember the number but it was more than I was fit to handle) of putting him back in bed I leaned down and gave him a kiss and then he did something that he had never done before. He just grabbed me and wrapped his arms around my neck and wouldn't let go! Then he started giving me kisses; over and over again. And every time he kissed me he would lean back and look me in the eye and then squeeze and kiss again. It was probably a couple of minutes of this. I started to cry because he had never done that before and it also calmed me down. After he was done I said good night again and then he went to bed.  

The other time I was doing our night time "good night" and after I gave him his hug and kiss I tried to get his attention and said, "Andrew, mommy loves you." and he just looked away. So I said it again and then I thought, maybe I'll try signing it. So I signed "I love you" and I said, "Andrew I love you!" and he just stared at the sign and then he looked at his hands and he made the sign for "I love you" and then held it up in the air, looked straight at me, and gave me a huge grin. Again, it brought tears to my eyes. That was the first time he ever communicated in the 3 1/2 years of his life that he loved me. It hasn't happened since (but I keep showing him the sign and try to help him make the sign).

So I guess the point of all this is to help share, with all who are reading, that it's hard to have a child completely disconnected.  It is just another one of those things that adds to the emotional exhaustion of having a child with autism. But when I have those rare connected moments they are huge and I cherish them.

The works of God made manifest...

Growing up I never imagined that I would have 2 children with special needs. I always envisioned my "perfect" little family: very well behaved children, immaculate home, adorable children, lots of laughing and fun, and most especially love. And honestly I felt like I deserved that family. I was a "perfect" child. I never gave my parents grief: I was obedient, well-behaved, loving, and kind. So for some reason I thought I should have gotten what I wanted. I have struggled and been at times quite angry that I didn't get that family. I at times have felt like God was punishing me by giving me children with special needs. I have since come around and realized that all those feelings were "false beliefs" (something I think and believe in my head, but it just is downright false). 

One day I was crying on the phone to my sister about these very struggles and thoughts that I was just talking about. And she told me about a man that she had just met the other night at a dinner. He was an older gentleman who had several children (8 I think, I can't remember) and every one of them has some sort of special need or disability. He told her that yes life was challenging and difficult but every single one of his children was a blessing from God. He said that when he looks at his children he thinks of a scriptural story from the Bible. 

It is in John 9: 1 - 3 

1 And as Jesus passed by, he saw a man which was blind from his birth.

2 And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?

3 Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.

He said to my sister, we weren't given these children with special needs because we sinned, or as some kind of punishment. They have come here to earth so that the works of God could be made manifest through them.

When she told me that, it helped me so much. These children who come to this earth that are "different" are very special. They aren't easy all the time but they help so many people around them. I have sat and thought about it and I think that there are more children coming to this earth with special needs because this world is becoming such a ME world. And having all these kids with special needs almost forces people to think about and serve others who can't do everything for themselves. And THAT is a work of God. 

Here are 2 YouTube videos that demonstrate my point exactly. 

God isn't punishing me by giving me two special needs children. He has entrusted them to me and is giving me the privilege of seeing His works being manifest through my boys to all those who they come in contact with.

My little heroes

I always talk on this blog about my two children with special needs, because that is what this blog is about. However, there are two people that I hardly ever mention that are a HUGE part as to why I can get through the day most days and who are the silent heroes in my life.  They are Emma (10) and Jacob (8)...my older "normal" children.  

They are superstars as far as I am concerned. They are so loving and patient with their little brothers (they do get their moments of frustrations but they are amazing).  Emma tries to play with the boys or tries to help them calm down if they are having a meltdown and gives them lots of love.  Jacob is much bigger than his little brothers and could very easily beat them up or push them to the ground, but he is always so patient with them and when they hit him or push him around he just takes it and never retaliates. It amazes me how great these two kids are.  

Matthew "using" Emma as part of his play while she just keeps on patiently reading a book. 

There for Matthew when he needs help or a hug.

Not only are they amazing siblings but they are wonderful children for me and Eric. They are usually pretty obedient and good listeners, they are very helpful, and they are VERY patient and forgiving of us. We sometimes have a short fuse and we snap at them when they really didn't do much. We realize it and apologize for it and they always just wrap their arms around us and tell us that they love us and that we are the best parents ever.  They say sometimes, "it's okay mom we know that you've had a rough day with Matthew and Andrew." Such compassion and understanding is just so helpful and wonderful.

I really am truly blessed to have these two on my team!

Andrew and Jacob working on a pumpkin together.

Jacob being Matthew's "horse" around the house.

Playing together on the trampoline

Out in public! Yikes!

One of the hardest things to do with Andrew and Matthew is go out in public with them. If I can I try and avoid it. But at the same time I tell myself, "they need to learn sometime." So I usually try and go out in public with them with AT LEAST one other adult. 

I can't even tell you how many times I have gotten stares or looks when the boys have been loud, have hit, thrown a fit, or been uncontrollable. I often wonder: "What are they thinking?" or "They probably think I am a terrible parent and can't get my kid under control!" It makes me want to just leave everything and run home and hide...hide away from the world.

One recent experience: My mom and I were out shopping and we went to a "Subway" type shop inside the grocery store. I forgot Andrew's snacks and drink in the car so I left Andrew with my mom in line while I went out to the car. When I came back Andrew was in full fit mode: screaming, hitting, and arching his back trying to get free of the cart! I ran up and tried to calm him down, the result was getting hit several times. I eventually got him calmed down. But there were definitely people staring at us. When my mom bought her lunch he starting throwing a fit again and the cashier was sweet and said, "Oh he must be tired or hungry! Poor guy!" but I saw the person behind them and he didn't look as sympathetic. While we were eating my mom turned to me and said, "Wow! People really do stare don't they! This is hard." I just shrugged my shoulders and said, "yeah, I'm getting used to it." But we did acknowledge the nice cashier.

I was looking for a video for a different post that I am putting together and I found this one. It is from the What would you do? TV show. And it addresses just this very thing. It amazes me the reactions of the people. I'm glad that there is tolerance and acceptance out there. I don't always feel it, maybe it's in my head, or maybe it actually exists. 

Eric and I finally decided that we are going to start to live more and stop revolving our lives around not disrupting others around us. So we took the kids out to the movies to see Frozen. We thought this would be a great movie to go see and we thought they would love the big screen and everything. I came prepared with Andrew's favorite blanket, some snacks, and the iPad. The one thing I didn't realize that Andrew was going to want and we didn't have was POPCORN!  Looking back Eric or I should have just gotten up and gotten some, but we didn't. The lady in front of us had popcorn and when she was done and put it down on the seat next to her, there was no stopping Andrew from trying to get it. He wasn't bad and he didn't throw a fit, but he was relentless. It was kind of funny looking back but we decided that maybe we should wait a few more years to go to the movies with him. The lady who had the popcorn kept on looking back at Andrew and at us, but never said anything and we didn't either. But Matthew was perfect and LOVED the movie. The favorite thing about that movie was looking over at Matthew's face and seeing it light up and hearing his laugh!

Going out is definitely a struggle but we have learned a few things:  come prepared with toys, iPad, snacks, and special blankets, and to understand that the experience probably isn't going to be great or wonderful, but at least we are going out as a family. In time I have to believe that it will get better, probably never perfect, but better.

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.

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 short...my 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.