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.

Road to Matthew's communication

So I have mentioned a little about Matthew's communication, but let me explain it a little bit more.  For the first year of his life he cried; unless he was sleeping or being held.  I was doing everything one handed because I just couldn't stand hearing him cry.  Eventually when he got big enough I was carrying him around in the baby backpack (cooking, cleaning, everything).  When he started crawling (around 10 months) he starting crying less and then at 17 months when he started walking he cried less.

(Matthew first walking at 17 months old)

With my older two children I had read a book on teaching your children sign language before they can speak to help with frustration, so I taught them both (5 or 6 signs) and it worked great.  With Matthew, he was very slow to do it, but he did get please, more, and thank you (but not consistently).  Matthew's mode of communication was screaming and crying.  Some kids if they aren't able to speak let you know what they want by bringing the thing they want to you, taking you to the thing they want, or pointing; Matthew did NONE of these things.  Like I said in the previous post, he would scream and cry and then we would have to guess what he wanted until we got it right, then he would stop crying letting us know we got what he wanted.

(This video Matthew is a little over 2 years old, he had been screaming and crying in his room for about 10 minutes.  I waited to see if he would stop or come to me, I knew he wasn't hurt. This is what he was like most of the time)

Once Matthew started Early Intervention therapies in October (2 years 6 months old) he started getting better with his verbalization.  About a month or so into speech his therapist let us borrow a Baby Signing Time video.  She used some signs in therapy and told us about how if children have a speech disorder they sometimes are nervous about expressing words, so sign language helps gap that.  So we borrowed the DVD and Matthew loved watching it.  So we watched it a lot. I remember when Matthew was about 2 years 9 months old, I was sitting at the computer and he came up to me, tapped me on the arm, and then signed banana!!  No crying, no fit, no meltdown!!!  I cried right then and there.  He approached me and communicated his wants for the 1st time (almost 3 years old). I really felt like sign language was instrumental in helping him connect communication. So we borrowed more signing time videos from his speech therapist and started using a lot more sign language at home.  He started using signs more to identify things (animals, colors, etc.). We started discovering that he actually knew a lot, we just never knew because he didn't have a way of telling us. And we also discovered that he tried to be verbal a lot more when he had a sign to go along with it.

When Matthew turned 3 he got transitioned out of home therapy to a special education preschool setting. He had a driver provided and went 4 days a week for 1/2 days.  I was so nervous about having him go, but I knew that is was the best thing for him.  He LOVED school.  He had a hard time with transitions and being cooperative but he was behaving a lot better and still trying to make sounds.  The speech therapist at school had several different ways of getting him to communicate (pictures, pointing, sign language, a "Go Talk").  They were really wanting him to communicate with the "Go Talk" (a device that talks for you by pushing buttons), and he would do it but preferred to use signs.  Along with school speech therapy I was also taking him 2 times a week to private speech therapy sessions. She was an amazing therapist as well (we have been so blessed with all the speech therapist that we have worked with.  All wonderful!). She also used sign language a lot.  

As a mother I am a worrier.  So I started worrying about Matthew going to Kindergarten.  He doesn't like crowds, he is really small for his age, the doesn't talk (he was improving but he was far from speaking intelligibly), he's Autistic....all these things started weighing me down. A few months before Matthew was turning 4 I was again worrying about Matthew's future.  I got a really strong feeling to look up the local school for the deaf and the hard of hearing. I thought it was a little strange but looked into it anyway.  I went to their website and immediately I was over come with emotion. I was crying looking over their site.  (I am a religious person, so I feel as though God was telling me that this was the place for Matthew) I e-mailed their school and asked if they would ever enroll a hearing child who couldn't speak but used sign language to communicate.  I got a response inviting us to come to the school to discuss the situation.  We went and my husband and I immediately felt like it was the right place for Matthew.  We talked to our coordinator who hesitantly agreed to try for it (we had to get approval for it). It was time for Matthew's annual IEP meeting, so my husband and I discussed our decision with his teacher and speech therapist, and got very different responses.  The teacher told us that she thought we were wonderful parents and she trusted our judgment; the speech therapist completely disagreed with us and told us we were abandoning our son's verbal communication and other things.  We KNEW it was the right thing deep in our hearts so it didn't even bother us.  (I am sharing this little part of Matthew's past so that parents out there reading this know that if you feel strongly about something with your child's therapy or education, don't be afraid to give it a try and stay strong).

Matthew got approved to go to the deaf school (much to our coordinators surprise). And he started up at the beginning of the school year.  It was preschool: 5 days a week full-day.  To make this long story a little shorter he did AMAZING at the school.  He started verbalizing more, signing a LOT, and his behavior improved immensely.  He started getting better about letting us know his needs and wants (it's still not perfect, but he is communicating and that is what we care about). Instead of 20 + fits a day we are now down to about 4 or 5 a day.  And when he has fits all we have to do is ask what's wrong and he can let us know.  

This past year we are finally getting to know our son!  We are getting to know his little personality, what he understands, what his interests are, etc. It has been so amazing and all because of sign language.  Our family has had to learn it too, but we are willing to learn anything if it's going to help Matthew succeed.  

(Matthew signing "Hi My name is Matthew (name sign) then he proceeds to spell his first AND last name, not even 5 and he can spell his name!)

I guess that is enough for this post.  I still have lots to share but giving a child a "voice" I think is one of the most amazing and rewarding things.  And every child is different, so just because this is working for Matthew doesn't mean it's the answer for all.

How I was dealing during this time

So many people have said to me that I am doing so well, that it is amazing how I can cope with everything that is happening in our family. They say how strong I am and how they don’t think they could do what I need to do every day.  I'm glad that I come across that way, but since Matthew was young, what I have felt inside, has been quite the opposite. 

Where I was then…

1. Emotionally spent everyday

2. Being upset with myself 

3. Mad/annoyed at Matthew and/or the situation

1.  Emotionally spent every day....One of the biggest things with Matthew is his communication. He expects everyone around him to be mind readers. He doesn't get (even now at times) that he needs to approach people and express what his needs or wants are. He started throwing fits, lots of them! If he wanted a banana, for example, he would go into the kitchen and throw himself on the floor and start crying. I would go up to him and say, "What? What is wrong what do you want?" And then the guessing game would begin, a drink? a cracker? a sandwich? a drink? When we finally got to the right thing he wanted he would stop crying and that was a confirmation to us that that was what he wanted. This was how it was for everything: watching TV, going outside, hungry, you name it. The pattern would be:  fit, guessing game, and then fits stops when we got it right. This would happen 20 or more times a day. So my nerves were usually shot by the end of the day. I will share more about our road to helping Matthew communicate in a different post.

2. Being upset with myself....I found myself crying a lot, wondering why this was happening to me? Why was I being "cursed" with such a trial? When were answers going to come? How was I going to help Matthew? I expected perfection in myself, so when I would start having any negative thoughts, and not just accept everything how it was, I would start thinking awful things about myself. "You are a terrible mother!"  "How could you wish that?" "Do you know how many people are out there that wish they had children and can't!" "You are so ungrateful!" "Matthew isn't that bad, other people have way worse lives than you!" And so on and so on. As you can imagine I was feeling pretty darn crappy about myself, which led to depression.  Of course, who wouldn't be with a constant barrage of negative thoughts in my mind all the time? What an awful record to be repeating in your head all day long. 

3. Mad/annoyed at Matthew and/or the situation...When he was young, I was also always comparing Matthew to his older brother and sister or older cousins, or even national averages. I found myself being annoyed that he couldn't walk up stairs like he "should" have, that he couldn't get a puzzle piece that I asked him to get, that he couldn’t ask for something, ANYTHING, instead of throwing himself on the ground for a new round of mind-reader guessing games. Then one day during his EI (Early Intervention) speech therapy he was working on a shape sorter puzzle thing. He completed the puzzle. He was so happy with himself and he started clapping. Then he looked up to see my reaction and that was when I realized what I had been doing; I had been so distracted with what he couldn't do and annoyed that he wasn't "normal" that I was missing out on his achievements. He was Matthew! And that was the first time that HE was able to do that puzzle! It didn't matter that Emma or Jacob could do the puzzle at eight months old, it didn't matter that it had taken him many attempts to get it, what mattered was that HE did it! After that I started celebrating and getting excited for him in all of his achievements no matter how small. And I started loving him for who he was, instead of being mad or annoyed that he wasn't what I thought he should be. It was a major breakthrough for me. Once I embraced that, I started charging full speed ahead, whatever it took to get Matthew the help he needed. He had a right to have the best life possible.

Where I am now…

What I wanted to share in this post is my feelings and how I came to accept some very basic things that may seem obvious, but have been extremely difficult to learn and even harder to accept. I know that Matthew is different. I understand that Autism changes the way he experiences every aspect of life. I also know that I don’t fully understand what is happening in his mind, and I may never get to that point. I need to accept, sometimes on a daily basis, that the limitations he struggles with will probably last for his entire mortal life.

However, I can honestly say that I am grateful that Matthew is in our family. I am excited for him and for his accomplishments because HE is doing them. I am still pretty emotionally spent every day, but I am coming to accept that for what it is (having 4 kids, 2 of which are special needs). I am not beating myself up as much (a work in progress), I am giving myself some slack. It has definitely been rough, but I am grateful that I can say that I have come out the better for these difficult situations in life.

How we came to get Matthew's diagnosis.

Matthew is my third child.  My daughter and son were both "normal" (rolled over, crawled, walked, talked, followed directions, etc all on schedule).  So when Matthew was born and cried ALL the time (except for when he was being held) it was very difficult.  Looking back on it now I see signs of something being off, but I just took it as his personality.  He didn't like getting massages (which my other kids loved, I'm a massage therapist), cried anytime he was in the car, didn't really respond to talking a whole lot, etc.  

By the time Matthew was 18 months and still crying a lot, not being able to do a lot of physical things (running, walking up steps, climbing, unstable walking, not really using a fork or spoon well) and wasn't speaking AT ALL I starting wondering if something was going on.  So naturally I went to his doctor and voiced my concerns.  He told me he was fine, a happy healthy little boy. He said, "he's just a boy. Most boys talk later in life. He is a more serious child, he is just taking it all in. And we can't really do anything until after he's 2 anyway, so we'll reevaluate at 2 years old." I felt like I wasn't being listened to.  I felt like I was being treated like a first time paranoid mom.  And I told him, "I have 2 other kids I'm not being paranoid, I can tell there is something not right." But he said to just wait and see what the next 6 months brought.

Matthew has to have things "just so" and likes to line things up

Well his 2 year mark hit and nothing changed; still no talking (hardly any babbling), his physical development had improved some, and couldn't follow simple one-step directions. Thankfully my sister's friend was visiting with her at my house and she voiced concern to me.  She was getting her Master's degree in Early Intervention Therapy.  She told me I should contact my local agency and get Matthew evaluated.  Early Intervention????  What's that?  I knew there was something wrong but I felt weird about having my son evaluated.  I wanted to just ignore the situation and pretend that it didn't exist.  This is a time in my life that I wish I could rewind time and change my actions, but I can't so all I can do is learn and move on (people tell me I should give myself a break because I was pregnant with our 4th child starting when Matthew was about 20 months old and was pretty much in bed for 6 months sick, but still I feel like I let Matthew down).  So a few months later (September I think), I contacted Early Intervention.  We got him evaluated and sure enough he qualified for services in Physical Therapy and Speech Therapy. So we started right up. He was doing so well with his therapies.  He really made a lot of progress with physical therapy.  With speech his listening skills were getting better but his verbal communication just wasn't coming along.  His therapist would try to work with him on his bilabial sounds (m, p, b) but everytime he went to say a word like "mat" is would come out "ca".  He was able to perform back of the throat sounds (which are supposed to be harder to produce) and couldn't do bilabial (the "easier" sounds). This really baffled everyone who worked with him.  

By November of that same year we got him in for an evaluation for a Developmental and Behavioral Pediatrician (started the paperwork on that the March of that year, our original appointment was for January, but got in on a cancellation). The doctor was 3 hours away, but we felt it was totally worth it.  They evaluated him for about 2 hours (which was recorded for them to review) and I also had to fill out a huge amount of paperwork of his history.  Then we met with the doctor. She said okay we are going to have a team get together and review his history and evaluation.  What are you looking to achieve from all this?  I told her, " I want you to tell me what is going on with my son!  I want you to tell me something other than, 'He is really interesting' ".  So we left and had an appointment to come back a week later for another meeting.  When we came back together the doctor said, "now I know that you don't want to heard this, but 'Matthew is very interesting' but we are putting him on the Autism Spectrum.  He is on the "highly functioning" side. And he also has a severe speech disorder." She then provided us with a whole bunch of resources and goals that she would like to see him achieve (i.e. peer play vs. parallel play).  We left the appointment feeling a little bit better, at least we has some answers, but does all this mean for our family and most especially for Matthew?

Matthew around the age he got diagnosed.

I cried a lot the next little while.  Now looking back I notice it was a grieving process.  I "lost" my son.  The son that was going to grow up, go to college, get married, have a career, etc.  (Now these things might happen in the future, I don't know.  One thing that I have learned on this adventure of autism is that you can not know what is going to happen in the future).   

I will continue Matthew's story on another post, but that is how we came to getting Matthew diagnosed with Autism.  It was a long and stressful road.  Since then it hasn't been a basket of roses but it has helped a lot with having some answers so that we could move forward and help Matthew be the most successful he can be in this life.

Why I am starting this blog

Being a mom is a very hard job. Being a mom of 4 young kids is harder. Being a mom with 2 children with special needs is sometimes too much to handle. I have struggled emotionally since my 5 year old was born.  I have had my ups and downs. My family and friends thought that I should write down my story, struggles, resources that I have come across, and feelings to share with others who might be going through the same/similar situation that I am going through.  I am not a writer, and I find it hard to express myself through the written word so I hope that I can help others.