A little about me…I am 41 ½ years old. Yes the ½ counts in my world. I am not so book smart but very street smart. I went to college (SDSU), graduated with a BA in Journalism and a minor in Political Science in 1996. I worked in the Advertising industry up until 3 years ago when WK was having a super tough time and needed me. My jobs always consisted of traveling, a LOT, far away and for long periods of time. I built and oversaw numerous digital Sales organizations over the years and have probably been responsible for over $100M in ad revenue. Not too shabby for someone who hated school and preferred to party.
I got married very young and ended up divorced 2 years later. I got married 4 ½ years later and then 2 years after that I welcomed my sweet son. WK had “issues” from the get go but as a new Mom who didn’t grow up around a ton of babies, I learned the ropes day by day and holy shit my life changed more than I ever could imagine.
WK started PT at 8 weeks old because had Torticollis, where you only turn your head to one side. The Doctors were worried about him having a flat head on one side and limited movement in his neck so off I went with a diaper bag in hand to Physical Therapy 2x per week for months. Nothing better that hearing your newborn infant scream bloody murder while some stranger manipulates his neck. FUCK.
Then came Acid Reflux. Little WK was having a tough time tolerating his formula so off I went to the Gastro Doctor who put him on his first RX, Prevacid to be exact. WK started to get better and ended up taking it for 2 years, changed formulas numerous times, etc.
WK sat, crawled and babbled like he was supposed to so as a new Mom I wasn’t too worried…..yet. Then it came time to introduce baby food and solid foods. He loved himself some baby foods except for peas but as I would try and have him eat sliced bananas or other “real people” food, he would gag. EVERY TIME. EVERY FOOD. So off I went to the Pediatrician who referred me to see an Occupational Therapist (aka OT). I had no clue what an OT was but I surely found out very soon.
When WK turned 1, I took him in for his 1 year check up. They give you that “list” so that you can mark off all the achievements your kid has made.
Ummm No, no and no were my answers to those questions. His Pediatrician at the time (who was HOT so I really didn’t mind taking WK to see him because I was THAT Mom who just secretly perved out on him) told me not to worry and that sometimes boys develop slower than girls so don’t “freak out” yet. Ok Dr. HOT Pediatrician, you got it! I will NOT “freak out” just yet. So little WK got all of his immunizations and off we went.
WK did get a low grade fever after the MMR but I am not one of those Mom’s who think immunizations caused her kid to have Autism. My kid wasn’t developing normally from the time he plopped out of me well actually was sucked out with a vacuum. I am telling you this because THIS is where I think the start of all the problems came from. I didn’t exactly have an easy labor, in fact it pretty much sucked ass. 17.5 hours, turned off the epidural, pushed for 4.5 hours and then he was “sunny side up” so I couldn’t push him out and therefore they sucked him out with the vacuum. Traumatic to the say least for him and for I. UGH!
At 14 months WK got a cold and off we went to visit Dr. HOT. It was at that time that Dr. HOT dangled his car keys in front of WK’s face and WK just gleefully looked the opposite way like he couldn’t see the keys or hear the Dr. Then Dr. Hot started saying his name, nothing, nada, zip, zilch, no response. WK was just staring at the ceiling. So Dr. HOT put his arm around me as we were walking down the hallway and said “I think you should have him evaluated for Autism.” Ugh…did someone just hit me over the head with a bat because that is how I felt and like any other new Mom my response was “what’s Autism?”
Funny how two simple words “what’s Autism” can change your entire life in a matter of one Doctor’s visit. So I went home, Googled everything and all of a sudden I started to realize that WK was different. That all of my concerns weren’t just him developing slow. That all of the challenges we had been through in his first 12 months of life were not common and that while the majority of Parents are joining Baby Groups and having playdates, I was spending every week shelpping WK from Doctor appointment to Doctor appointment. I wasn’t crazy even though I had some people (including family members) telling me I was. I wasn’t. I was determined to figure out what Autism was and how I was going to make it go away. Ahhhhhhhh lesson #1 for me…Autism was never going to go away. EVER. It will always be there, staring at me in the face, challenging me to a duel in the arena, but how I choose to fight it is what was going to be crucial in “making it go away.”
And then came the 12 months of complete and utter despair. I wasn’t ready to challenge Autism. I was too busy having a HUGE pity party. Why WK? Why me? Why us? What did I do wrong in my life to deserve this? I am not strong enough to handle it. I am scared. I am alone. My family thinks I am crazy and that I caused it. Yep, got told that one by someone. And trust me, I wonder if in utero something happened or I ate something that did cause “it.” TRUST me the guilt that I carry about my son being special needs is with me every single day of my life, but the good news you will all hopefully see by reading this blog is that all of the positive things I do, he does and we do together FAR outweigh the guilt.
I cried every day for 12 months. I went on anti-depressants for 5 years and one day I looked at his sweet little face (he was approximately 3 years old at the time) and I thought to myself “WK your Mom is a Fighter and I haven’t been doing a good job for you. So guess what? Times up! You are going to have the STRONGEST Fighter in your corner starting now.” And that truly was it. That was the day where I said no more pity party. No more feeling sorry for myself. He deserves WAY better than this shit so time to step up.
M-F 2 hours each day of in home ABA Therapy. I was working from home at the time in between traveling and this is when WK was non verbal so it was basically 2 hours of him screaming bloody murder and me pretending to work in my office. Can you imagine some stranger in your house every day intentionally making your child cry? I can assure it is NO fun. Zero.
2-5 years old was pretty much a nightmare for us. WK didn’t talk. He wasn’t potty trained until 3.5 years old. He didn’t sleep that great. He was very rigid with his schedule (still is) so if there was any change to it, it would cause meltdowns that could last up to 2-3 hours. I remember one day I was at our local Albertsons and I was in a hurry. WK was in the shopping cart (the larger part of the cart because he was too big to sit in the front seat) and I didn’t go down Aisle #5 like he wanted me to. I was in a rush. He kept pointing to #5 and saying “uhh uhhh uhhh” like in his language “go this way.” I couldn’t dude, we were in a rush and I needed to go down a different aisle. Well WK climbed out of the cart, laid down on the dirty floor of the store and screamed, cried and starting pulling as many things off the shelf as possible. So I calmly explained to him that his behavior was “NOT OK” and that Mommy was not going down Aisle #5.
I hovered over him to ensure he wouldn’t hurt himself but I let him cry it out and he cried for a long time.
Ahh and then came the common judgmental asshole parent, strolling her perfectly well behaved children in the shopping cart down our Aisle, staring at WK, starting at me and then under her breath says “what a spoiled brat.” Well folks, what can I say, I told her to fuck off (yes in front of her perfectly angelic children), that she had NO CLUE what the situation was here and that my son wasn’t a spoiled brat that he was Autistic and had a developmental disability and that I didn’t appreciate her being rude and judgmental.
I can bore with you probably 200 additional stories off people being judgmental, commenting, staring, pointing at us over the past 9 years, but my point in sharing this one story was that it was the first time I had to encounter a situation like by some other Parent judging my son. It made me irate and then it made me cry. I cried in the parking lot for a long time while WK was still crying in his car seat. It sucked. Bad. It also made me realize that this was yet another challenge I was going to have to face and that I better get a grip pronto because surely this wasn’t going to be the first and only time something like this happened.
Hands down years 2-5 were pretty shitty. WK didn’t talk. We had to communicate with him via sign language or his PECS board. For those that don’t know what this I will explain in non-medical terms. It’s a Velcro laminated board that has pictures of everything in WK’s life that are laminated and say the word underneath. For example if he wanted juice he would have to go to his PECS board, pull off the photo for “juice” and place it on the Velcro strip, then bring me the board. This way of “communicating” with WK went on for years. Years and years which felt like a lifetime, but it was our way of communicating with this kid. I am going to pause here and work on Part 2 of Memory Lane. See you on the next post!