Life with Carter…A Blessing in Disguise

A special note from The Write Reflection: April is Autism Awareness Month. In an effort to spread awareness about autism, The Write Reflection will feature guest bloggers this month on the subject of autism. The third and final post in our series is written by Marcy Dadich.
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My son, Carter, has Autism.  I feel that I am constantly saying that phrase and explaining that to people.  I think I feel I need to explain this almost as an excuse.  “I am sorry he said that, he has autism.”  “He didn’t mean that, he has autism.”  Do I really need to excuse this behavior?  I don’t know.  I certainly do not want people to assume he is “just a rude kid” and I do not want people to assume that I have poor parenting skills.  Living with an autism diagnosis is difficult.  It is sad, frustrating, rewarding, scary…every feeling you could possibly have all rolled into one. 

Carter is 8 years old and is in 2nd Grade at our local public elementary school, which happens to be the same elementary school where I teach.  Carter was diagnosed just after his 4th birthday, which is a little later than the age where children are usually diagnosed.  I always knew something was a little off, but just chalked it up to him being the third child and being used to the older siblings doing everything for him.  He was receiving speech therapy through our county Early Intervention, but was making slow progress.  It was during this time that he started to pull away socially and preferred to be alone playing. It was also during this time that we realized he had an extremely high pain tolerance, often not noticing when he was injured.  I began seeing a lot of fecal smearing (daily) and tantrums and meltdowns.  I knew there were some sensory issues, so he began Occupational Therapy. 

It still wasn’t clicking with me that there could be more going on.  Not until the day when our Occupational Therapist asked me if I ever felt uncomfortable leaving the house with Carter.  At first I said “No! Of course not!”  But the more I thought about it, I did.  I hated the uncertainness.  We could go out in public and be fine.  He would be fine.  Or we could leave the house and all hell would break loose.  I never could tell what kind of day we would have, so I realized at that point, that I was not leaving the house as often as I used to.  I was afraid to take my child in public.  Wow.  I was stunned.  That was my moment that I realized there was something else going on and I needed to look into it.

I took him to our pediatrician, whom I love.  She has been so wonderful to us.  She sent us to a psychologist for more testing.  We were so lucky with our psychologist.  She is amazing.  (Actually, we have been so lucky with everyone who has been involved in Carter’s success – they have all been truly amazing!)  Anyway, the psychologist administered her testing, and Carter was diagnosed with Autism Spectrum Disorder (level 3).  I did not shed one tear with that.  I immediately put on my battle gear and went to to war…for my son. 

My husband and I embraced everything we could about this diagnosis. I researched, I asked questions, I sought out treatment.  Over the next  few years, he was receiving speech therapy 3-4 times a week, Occupational Therapy 2-3 times a week, and physical therapy once a week.  I was also driving him an hour south once a week to Pittsburgh for vision therapy.  During this time, he was completing the Therapeutic Listening Program (through occupational therapy) and he was also involved in therapy with horses as well as receiving full-time wraparound services.  Looking back, I cannot figure out how I managed that schedule, while working full-time and having three other children (including a newborn daughter).  But, as I said, I was in battle mode.  I needed him to know I was doing all that I could for him.

I did not process his diagnosis until he registered for Kindergarten. I don’t know what it was about registering for Kindergarten that made me hit the brick wall of realization, but that was when it happened.  Was it the uncertainty of a new school year and a new place? Was it the anxiety I had over what is going to become of him in the future?  Was it the fact that he is growing up and his behaviors were going to become more socially unacceptable (because he is not a little kid anymore?)  I am not sure, but I took him to Kindergarten registration and he did great!  Better than I had hoped or expected. 

And then I cried.  I think I cried for two weeks straight. I cried at work, I cried at home, I cried in the car, I cried in the shower…It felt as though I was crying nonstop.  Every time I thought about Carter, I cried.  The realization of the diagnosis had hit me. I cried for his future.  I cried for my future. I cried for his siblings knowing I will never give them all that they need because a child on the spectrum is a full-time job in itself.  I cried for my husband because I knew I can’t be the wife he needs because I was giving EVERYTHING I had to Carter.  I just cried.  All. The. Time.  Two weeks later, I picked myself up, brushed off my pants…and entered battle mode…again.

Kindergarten was a difficult year.  Not because Carter was having a difficult time, in fact he thrived in Kindergarten.  He received Learning Support services as well as continuing speech and occupational therapies and full-time wraparound.  At this point, he had “graduated” out of all of his other therapies (success!).  He struggled most with transitions and changes in schedules.  His teachers were very patient and understanding with him.  I struggled a great deal that year as well.  Personally, it was so difficult having Carter at school, in the same building that I worked in.  At that time, I was teaching Kindergarten.  The same grade as he was in. Everything that I was doing in my classroom with my own students, I would think “I wonder how Carter did on this activity?”  or “Oh, I hope he doesn’t have too much trouble with this.” 

I had a hard time seeing him at lunch and at recess, knowing that he was not making an effort to be a part of conversations of his friends, and knowing that he was probably not playing with too many peers because his classmates did not want to play the same thing everyday, as he did.   Carter was perfectly fine playing by himself at recess; I was the one who had a hard time with it. 

I especially had a difficult time with his meltdowns that year.  There were only a few of them, but they were whoppers.  Luckily, at his elementary school, there is a sensory room.  He would visit the sensory room daily for his sensory breaks (he was also using various tools throughout the day in his classroom as well).  One morning, Carter had a meltdown.  His teachers took him to the sensory room and gave him time to work through it.  In those instances, there is no talking with or reasoning with him…it will let up on its own, in time.  As the meltdown continued for a period of time, one of his teachers came to get me to see if I could help.  So, I headed down the hall to help.  He kicked me, punched me, tried to bite me, spit at me, yelled in my face, threw things…you name it, it happened.  This carried on for a long time.  Then it was quiet, he had exhausted himself out.  I knew what was coming next.  The remorse. He did this after every meltdown and it broke my heart, every time.  He crawled up on my lap for a cuddle and sobbed, not able to catch his breath sobbing.  Uncontrollable sobbing, and apologizing.  “I’m sorry Mommy. I’m so sorry Mommy.”  I cuddled him back, so thankful for these moments.  Not thankful for the crying, but thankful for the quiet time with just him.  I forgot about everyone else in the room and focused on him.  He needed me.  Once he was calm again, he left with his teacher to get a snack and a drink and I left to go back to my students.  After that extremely emotional situation, I went back and taught my 20 kindergartners the best that I could. 

He thrived in First Grade as well.  Again, we were so incredibly lucky to have wonderful teacher who put as much effort and energy into helping Carter to succeed as we did at home.  She was also so wonderful with me.  She knew my anxiety about him and also knew my concerns.  First Grade was good for Carter and me.  Halfway through the school year, we weaned him off of his wraparound services.  He did well without that support, although he was still receiving academic support at school. 

Currently, Carter is in Second Grade.  He is right down the hall from my own Second Grade classroom.   He has made outstanding progress this year.  He still does not have his wraparound at school, however, we do have limited hours in-home.  He is completely mainstreamed in his regular education classroom, with limited modifications.  He just received his 3rd nine weeks report card…all A’s and B’s.  My son, who is on the spectrum, has a report card of all A’s and B’s without much modifications! What a blessing!  His teacher this year is fabulous.  He has done so well in her classroom.  She enjoys Carter’s sense of humor and enjoys him so.  I have realized this year, that I enjoy having him at school with me.  I like being able to see him in the hall, or at lunch, and throughout the day.

I still have an enormous amount of anxiety when it comes to Carter, especially about his future.  Will he be able to hold down a job, have a family, and a “normal” life?  I hope he does.  I hope he can find a girl who can love him for him, and has the patience of a saint…and will make him happy.  I hope that he will have a fulfilling life.  I worry about what happens if something were to happen to myself and my husband.  Who would know how to take care of Carter?  My mind can’t help but creep to thoughts of the future. But when it does, I stop it.  I need to live in the now.  I need to be here to celebrate him for who he is and what all he has accomplished this far.  He is truly, truly, an amazing child.  

Life with him has taught me so much about patience, acceptance, and unconditional love.  It is haunting the amount of times each day I stop and realize who all I have let down for that day. I let down my students at school, and their parents. I let down my friends.  I let down my parents and my siblings, nieces and nephews.  I am constantly letting my three other children down, as I know (and they know) that I have to invest more time to Carter.  Is that fair?  No, but I do the best I can.  I let down my husband.  I am not the wife that I should be.  Real life has caught up to our relationship.  I feel badly about this.  I honestly do the best that I can to balance my life.  I do poorly at it at times, but I do the best I can.

Over the years of living with this diagnosis, I have come to accept it.  I have come to find humor in situations regarding Carter and things that he does or says.  I have accepted that I fail most people who rely on me.  I have accepted the fact that I do my best.  Day in and day out, I do my best. It is all that I have to offer.  Just last week, Carter and I were in the car, and from the backseat, I heard “Mom, what is autism?”  EEK!!  I am not ready for this! And how am I going to bring this down to an 8 year old level?  I explained how it is a different way some people’s brains work.  How maybe some people might have trouble playing with friends or looking at people in the eyes when they talk.  Some people might have trouble in school and need to get some extra help.  I then asked if he thought having autism would be a bad thing?  He thought quietly for a few minutes and said “yes.”  My heart broke right into pieces at that moment.  I quickly reassured him that no, having autism is not a bad thing.  In fact, it is wonderful.  Having autism makes the people around you love you so much more.  He accepted that answer and we moved on to a new conversation.

I knew that I had to start preparing myself for the conversation I dreaded.  He was becoming aware of things.  I am not sure how.  Maybe he heard me and my husband talking one time.  Maybe one of his brothers said something to him.  Who knows.  That doesn’t matter.  What matters was that I have to be prepared for this conversation.  My dear friend and I went to Barnes and Noble and I ordered a couple of books that I thought would be helpful.  As they arrived in the mail, I hid them away, hoping to never have to use them.  I didn’t want Carter to think he was any different than anyone else. I wanted to spare his feelings from that.  But, that didn’t happen. 

One night, as I was tucking him in and we were discussing our schedule for tomorrow.  He said, “Mom, I think I have autism.”  The moment I was dreading.  I asked why did he think that?  He said, “I do this with my hands” and showed me what he does when he stims.  He said “no one else in my  class does that.”  Ouch.  So, I calmly went and got my stockpile of books and we first read a phenomenal book that explained what autism was and what it looked like, using kid-friendly words.  Carter and I talked about each page and I asked questions.  I reinforced multiple times, that it means people love him all the more because of it.  When he is asked about it, Carter says “I have autism.” Carter knows he has autism.  He knows his brain works differently than others. He knows his family does special celebration days and events just because of him.  He knows his family loves him so very much.  I am ok with that.  I am comfortable with his level of knowledge. 

Some people do not like to celebrate April as Autism Awareness.  Yes, those of us that live this life, we have autism awareness every single minute of every single day.  I, for one, look forward to celebrating during this month.  We need to raise awareness and acceptance.  We need to do special events, and walks, and such because these adults and children deserve it.  It takes a community to raise an individual with autism. From family to therapists to school personnel. 

My family has the most wonderful extended family one could ever hope for.  I know that when I take Carter with me to his brother’s soccer practice, that there are 20 other moms helping me keep an eye on him.  I know that when I drop him off at wrestling practice, his coaches know to keep a closer eye on him, as do all the assistants. We are striving toward our goal of acceptance.  We are making gains toward this.  I am thankful I can be a part of it.  
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About the Author
Marcy Dadich is married to Tim Dadich. She has four children: Aidan, Jonah, Carter, and Lyla. She teaches 2nd Grade. She loves to spend time with her family and to read. She works hard to bring awareness and acceptance of Autism Spectrum Disorder to those around her.