With Autism Awareness month right around the corner I thought it was the perfect time to share Bug’s story for those of you who haven’t read it. Re-reading it myself has got me thinking about writing a second part because we are light years from the place we were in back then. Bug is now almost eleven and is doing so many things I never thought he would. All of his hard work truly deserves a part two. We raise the bar and this amazing, beautiful boy leaps right on over it!
When I found out I was carrying my little Bug in my belly I didn’t have the typical response that a young mom might have. I wasn’t nervous at all, I wasn’t scared or panicked. I was completely overjoyed!!! I wanted my baby boy with every ounce of my soul and I couldn’t wait for the day that we would finally meet. My pregnancy was a good one, pretty normal as far as pregnancies go other than I looked hilarious because I was ALL belly. I made it to every checkup and always got a good report. I finally went into labor at 1am, two days after my due date, on a hot summer day in 2002. All I can say is the epiderul is my good friend! I don’t know how these ladies do it without one! I would have ripped someone’s face off! lol….after 16 hours our amazingly beautiful creation was welcomed into this crazy world and I was even more in love with him than I was before. It was the day before my birthday. I got the best birthday gift I will ever be fortunate enough to receive. Bug’s first year was such a good one. He was such a good baby…and I know everyone says that but he really was. He met every benchmark on time and some even a little early. He was always so alert and would always focus his attention on you. He rarely ever cried, he was always smiling and giggling. He said words like mama, dada, nooooo, quack quack, and one day he even spouted out “nutrigrain!!” Ha ha i will NEVER forget that, he was only about 11 months old. He got really sick and at the time I didn’t know why or what was going on but things started to change with him. Looking back you can even see it in our home videos. It was like a switch had been flipped..he was acting like a different kid. He quit saying all the words he was saying and he started “talking dutch” as the hub’s grandma would say. He also lost eye contact. He walked on his tiptoes. He wouldn’t play with his toys the way they were meant to be used, he would stack them all up or line them up around the room or in the windowsills. He ran around for HOURS on end flapping his arms around and yelling. Being new parents we didn’t know what was up and when we expressed concern to the doctor he told us Bug would “catch up, sometime boys take longer with developmental things.” Well we went home knowing something was up. We blamed ourselves. We thought maybe it was because we didn’t go enough places and expose him to enough things so we tried everything we knew to do. Bug hated going anywhere and when we did go places he would scream at the top of his lungs until either we were asked to leave or we were ready to just go because of the embarrassment from all the stares. We drove to New York one time and Bug screamed for 5 hours. I am not exaggerating. 5 hours. We did everything imaginable to comfort him. We finally stopped at a kmart at 2 am just as the store was closing. We begged and pleaded with them to let us in and luckily they did and we spent every dime we had with us on a dvd player for the car to play baby einstein and a gameboy. I don’t know if it was the dvd player, the gameboy, or sheer exhaustion but he calmed down finally. When we got home I took Bug in for a checkup and a nurse asked me is he autistic? ….I have to be completely honest here..I was so pissed she said that in that moment. I thought how dare you say that about my perfect, beautiful boy! I had no clue what autism was but I didn’t like hearing that at all. I complained about it to my husband for days and finally I got over myself and being mad and looked it up online. The first warning signs I read were- little or no eye contact, speech delay, doesn’t respond to name, arm flapping and other “stimming” …..my heart sunk to the bottom of my stomach and my eyes were so filled with tears I couldn’t see the screen anymore. I knew my baby had autism. So many of the things I thought were unique to Bug’s personality were actually things that many autistic kids do..like his arm flapping and running..I cannot even describe to you the feeling I felt. There just aren’t words. I immediately made another appointment and told our pediatrician I wanted Bug to be screened for Autism. Everything I read said there is a small window of time and early intervention is key! Bug’s screening obviously pointed to Autism. He was diagnosed pdd-nos, speech delay, and adhd on the spot and we were referred to an autism “specialist.” we were put on a year long waiting list….a waiting list?? when i just found out there is a small window of time??!!! This made absolutely no sense to me. Why are these waiting lists so long?? I know now. I used quotes back there with the word “specialist” because the doctor we saw is a joke and was a complete waste of our time and he ultimately set us back 3 years with our progress. He dismissed everything I said immediately after I had said it. Bug finally was diagnosed Autistic 2 years after that asshat doctor gave us his diag-nonsense! I thank my lucky stars everyday that we didn’t listen to him. We knew he was wrong, he spent 5 minutes with us total….we waited a year for 5 minutes of his time. We would’ve been so far behind where we are today if we wouldn’t have got gone with our gut and got another opinion. You HAVE to go with your gut. You HAVE to be an advocate for your health and the health of your children. No one will ever care as much as you do.
My little Bug has worked very hard to be where he is and you couldn’t find two prouder parents. He has autism and it is a big part of his life but it doesn’t define him. He is sooo much more than Autism.
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