I felt like I left with a different little boy than I came with


     He was always different. And while I was pregnant with him routine blood tests came back with indications that he had a 1 in 20 chance of having Trisomy 18 – a severe chromosomal disorder that, if the child is even born alive, results nearly 100% of the time in death before age 1.  So when he was born and he was perfect, I was actually quite surprised.

     I was sure something would be wrong with him after the test results and all of the warnings from the doctors. After all of the special ultrasounds came back normal they told me we should still be cautious, that he could still have some sort of chromosome issue. One doctor actually said “You should still worry.”  … Who says that to a pregnant lady?

     After he was born I asked the nurses and doctor several times if they were sure he was all right and healthy. They assured me he was. 

     It wasn’t until he passed his 2nd birthday that I was convinced something was wrong and came to the doctor with a list of symptoms/concerns about his development. More info on this can be found on my previous post: What is autism? How did you know he had autism?

     It was April, Autism Awareness Month, and there was a ton of coverage on TV about autism. And a lot of the stories hit home and reminded me of my son. I made an appointment, holding back tears, to talk to the doctor because I was really worried he had autism. The nurse called back and helped me feel better, she said “God chooses special people to have special kids” and it did make me feel better.  And I do believe that. She told me to write a list of my concerns and also what he eats, how he acts, etc.

     The day arrived for the appointment with the doctor. When I got halfway through reading the list I had composed (doesn’t respond to name, spins in circles, walks on toes, in his own world, etc.) she stopped me and said he needed to be evaluated. 

     The steps to follow are intimidating for anyone, especially an unsure young mother – 27 years old – who is also overwhelmed with the business she owns as well as her 4-year-old daughter. Teams of people came to my house to evaluate him. Therapists were booked and they started to come to the house twice or three times a week. I was given assignments: make him ask for each item of food, stop the swing and wait for him to look you in the eye then say “go” and push him, get him ready for full-time school that starts at age 3.

     The therapists who don’t have children of their own irritate me the most. They give assignments that are unreasonable since they don’t understand what it is like to be the mom of  young children.

     Once the teams came in and asked a million questions we were referred to the neurologist.  We had to wait a month for the appointment.  The day finally arrived and the nurse practitioner entered the room. Up until that point no one had used the word “autism” when referring to him. They used the terms: “developmentally disabled” or “delayed”. 

     I said, “I think people are hesitant to use the word autism.” 

     And the nurse said, “Ok – autism.” 

     That was how I got the diagnosis.

      Afterward we went to play at a playground before hitting the road back home. I remember looking at him differently, re-evaluating his future as he played. The diagnosis was brutal, cold, and routine. And it had changed our whole world forever. I felt like I left with a different little boy than I came with. Even though I had known the whole time that something was different about him.

     Since his diagnosis – May 30, 2007 – life has been a blur. Before he started full-time private school (Hooray for scholarships!) I used to drive to and from therapy appointments all day long, as well as run a business that is open 7 days week, and care for my typical daughter. I  had therapists in and out of my house several days a week for years. Now thankfully he gets all of that therapy at his school so I just drop him off at one place and pick him up later. And therapists don’t come to the house anymore. That was a lot of pressure to always have the house clean for the therapist — even though they assured me they understood why I would have a mess, I still felt such pressure to be  sure the house was clean. I guess I didn’t want to spoil that whole Super Mom image.

    An autism diagnosis is nothing to fear and I feel SOOOOO blessed to be his mommy.  He’s an awesome kid and I wouldn’t change him for anything.

(my daughter’s awesome too – but since she doesn’t have autism she doesn’t get much mention on this blog — I will have to try to mention her more since she is such a great sister and daughter )

“I don’t know how you do it.”

     Well first of all – I don’t have a choice. I guess I could just be a reject mom and neglect my kids or run away, but if I don’t choose that route the only other option is to “do it”. I do it because I have to, because I don’t have a choice, because this is my life – and these are my precious babies. I do it because I love them, and I love my son with autism even when he is covered with poop, and I do it because I am the mom and it is my job. But my son is definitely lucky he is so cute because if not then I might not put up with all the adventures in poop. (ok I promise I won’t talk about poop anymore in this post)

     But aside from that, I think what really helps me “do it” is my positive attitude. And also my husband’s positive attitude and his calm in crisis which I am not so good at. You know that is actually one of the positive aspects of my husband’s ADD – that he is calm in crisis situations.  I have a feeling there will be a few posts about the negatives of having an ADD spouse (sorry honey) but at least I have admitted there are positives too. 😉

     So I tried the negative, poor me, life sucks attitude. It didn’t get me very far.

     After my son was diagnosed there was a definite mourning period. I mourned the loss of the son I thought I had, the one who was going to grow up to play major league baseball, the one who was going to talk before the age of 5, the one who was going to understand what danger is and avoid dangerous situations. And I was sad for about a year. I was embarrassed of him at times, I thought “Why me? Why us?”, I cried when I thought about how detached he was and how I couldn’t communicate with him. And I think it is healthy and normal to have that mourning period. Just like mourning a death, mourning the loss of my “typical son” went through the same phases:

  • Shock  (Autism? Really? But the pediatrician said he was fine, “a walker not a talker”)
  • Denial (He is very high functioning and should be able to be in a regular kindergarten class by the time he is 5)
  • Bargaining (Maybe it’s his diet. If we just change his diet then he won’t have autism)
  • Guilt  (If only I didn’t eat McDonald’s or lobster when I was pregnant. I should have known more about the vaccines before I let them inject him. I was under too much stress when I was pregnant and that is why he has autism. I had too many ultrasounds.  — I could go on all day talking about the guilt I felt.)
  • Anger (Why do I have to have a kid with autism? Why can’t I have the typical little boy that I thought I had!?! It is so hard – I can’t handle this!! He is so difficult – MAKE IT ALL STOP!!!!)
  • Depression (<sob>My son can’t communicate with me and pushes me away. <sob> I feel so alone, no one understands what I am going through. I am a bad mom, I should be able to do better. <sob>)
  • Resignation (The diet isn’t going to help. He is just different and he always will be different. We are not a typical family – we will not blend in, we are not “normal” and we will be stared at when we are in public.)
  • Acceptance and Hope (My boy is awesome just the way he is! He is so sweet and smart. He is such a joy. I am so blessed with my two beautiful and healthy babies. He is making great progress and can maybe even lead an independent life one day.)

     So that took about a year, and once I was at the acceptance and hope part I realized that a positive attitude makes such a big difference. Like the poster said in my 3rd grade classroom “Attitude is Everything”.

     I could go on and on about positive thinking and how our thoughts determine our reality – and I probably will – but that is for another post. For now, I leave you with a song 🙂

August 2020