I’ve been working on these words for awhile. Trying to select just the right ones. Like fresh fruit at a Farmer's Market...I've sifted through ...choosing the ones that are bruise free and ripe. These memories have been wrapped in a box with delicate tissue and stored deep inside a closet. I feel only slight fear as I open the door to them because I know how the chapter ends now, and I know it’s a happy one. I know sharing them will be good for me...and for others....so here we go...
The road to Early Intervention is paved with… nothing…it’s actually not even paved…and there are huge potholes everywhere. When you drive on it, you pretty much feel like you are ripping your tires to shreds and ruining your car. It’s OK- in the future you will learn how to drive on this road…and you will repair your car with better, stronger materials…and you will start to enjoy the view again...
On a beautiful and sunny Friday afternoon in March of just last year we were at our favorite neighborhood park -swinging. Greyson was 21 months old and I was just a few weeks away from giving birth to Parker. There was a little boy swinging next to us a few months younger than Greyson. The little boy no longer wanted to swing so he told his Mother, “down”. Whenever G wanted down, he would just cry or whine. Michael and I both noticed this and we talked about it later that night over pizza.
Greyson was our first child and we didn’t know what to expect, but we were both noticing children surpass Greyson in the language department. I mentioned it at our 18th month well baby visit but was told that he would come around at his own pace. At 21 months he only used nouns and he didn’t call us “Mom” or “Dad”. He did have about 20 words in his vocabulary so I wasn’t concerned, but Michael was. I calmly reassured him that I was around children more often, and G was perfectly fine. Michael insisted that something more was wrong with Greyson, and so I started to get irritated. He was stressing me out- making G’s delayed speech into something more than it was. I was about to pop for crimminy sake, and here he was focusing on the fact that Greyson said 20 words instead of 25-100. I wanted to be safe, and reassure Michael so I made an appointment with our pediatrician first thing Monday morning to discuss Greyson’s development. I felt so stupid calling to make that appointment. I didn't know what to say when they asked what we were coming in for- so I said I wanted his ears checked. I wrote a list on my iphone of all the words he did say to bring with me .…I was racking my brain…truck….duck…pig…. I mean, He could even say Archibald (“arch-ball”) from Yo Gabba Gabba. I knew that we would have that “language explosion” everyone talked about any day.
The pediatrician said that Grey's speech was on the low end of normal, and based on our feedback (he has appropriate emotions-fear/happy, he hugs and loves on us, he gesticulates…he tries new foods) he agreed that it didn’t seem like anything else was going on besides a delay in speech. To be safe he referred us to get a hearing and speech evaluation through the local Children’s Hospital. I would be able to make an appointment for both after the physician's office filled out an official referral for services.
After the referral went through, I called to make the two separate appointments- Speech and Hearing. There was nothing available for another 3 months. I made one for the next available day and time, but called every few days to see if there were any cancellations before then. There were cancellations the very next week for both, so we ended up getting evaluated right away. Greyson's hearing was perfect and his speech was considered the low end of normal- but still within normal range. I was relieved. By then Grey was extra focused on things with wheels. He would say truck over and over- once I remember hearing him on his monitor falling asleep repeating the word “truck”. I started to feel just a glimmer of unsettled in my soul. By then I craved those stories that Mothers told me everywhere I went - “My friends cousin was a boy and he didn’t talk until he was 4. He’s 11 now and he is fine.” Every one of those stories brought me a speck of relief.
Michael still believed something was wrong but couldn’t put his finger on it when I asked for specifics, except that he noticed that Greyson didn’t like walking in the grass barefoot and he loved to play in the water. I thought Michael was secretly anxious about the birth of Parker and was displacing his fear. I was done pursuing it though - we had been told by more than one professional that Greyson was fine…we were told by his ENT that he was too young to even have Speech Therapy or a speech language pathologist appropriately evaluate him - and it really couldn't happen until he was closer to 3. That was enough for me-4 professional opinions.
I told Michael, “I will not stop you if you want to pursue this further, but I am not making any more appointments.” So Michael made an appointment with the Central Valley Regional Center (CVRC)- a private nonprofit corporation funded by the state to see Greyson at their Early Intervention Eligibility Clinic. The next appointment was in July.
On April 15th Parker was born. We came home from the hospital a day later and that’s when the screaming began. Whenever Greyson would get frustrated he would throw himself on the ground and start to scream. It was a loud, long, high-pitched scream that stopped me cold every time. He would do it constantly throughout the day.
We tried everything to help him but nothing worked. He was so angry with us- me mostly, and I just chalked it up to the birth of Parker. The first night I was home Michael brought Greyson over to me and said, “Give Mommy a kiss Goodnight”. I turned my face to Greyson and he slapped me. My heart was breaking. People had always commented how easy going Greyson was. That easy going boy was now gone. My parents came to visit and my dad noticed…he said that Greyson was not the same happy go lucky kid he had been on their previous visit-- 9 months prior. He wasn’t making eye contact with anyone other than Michael and I- and even that was sporadic.
Michael and Greyson went to the Regional Center in July. We were told we could not bring any other children so I stayed home with Parker. Greyson was evaluated by a multi-disciplinary team, consisting of a pediatrician, a nurse, a speech-language pathologist, and an intake counselor. Greyson failed the MCHAT (Modified Checklist for Autism in Toddlers). And due to this and his speech delay, CVRC referred us to Early Intervention services through the local school district.
We started speech right away through our own private insurance and Early Intervention preschool. I was hyper-cognisant of Greyson…I noticed him start to look at things sideways when playing.
He was also lining things up.
I took this picture before I knew...Like every other Spectrum Mother before me- once I realized- I went back and scoured old pictures and videos like a woman obsessed...I wanted to find clues...I wanted to try and pinpoint the day...the moment...the instant the Happy Go Lucky- bright blue-eyed Greyson disappeared.
I googled and read like mad. I was scared. I would take him to speech twice a week, and Early Intervention Preschool twice a week. The school suggested we have the school psychologist evaluate Greyson for more help in the form of ABA (Applied Behavior Analysis) services- just to be on the safe side. It’s a delicate situation. I asked teachers and professionals- Do you think he is on the Autism Spectrum? And they really weren’t at liberty to tell me so I would get answers like- “Well, it’s a little too soon to tell…he’s got so many great Typical qualities, but he does have a few red flags." No one could give me the answers I needed.
We went about our business…speech, school….we were approved for 30 hours of ABA a week and that would start at the beginning of OCT. I continued to read and read. Each time I read about Autism I would feel so much better because Greyson didn’t do all the things listed. One day I read the diagnostic criteria for Autism…and read an article about "Visual Stimming" in regards to Autism. It describes specific things Greyson did...like look at me or at toys from his peripheral vision. And suddenly, literally within a seconds time...I knew. I finally “got” that you didn’t need to have all the qualities listed to be “on the Spectrum”…that’s why they call it a Spectrum because there are numerous behaviors a child may or may not have and to varying degrees. And at that instant, I didn’t think I knew he was on The Spectrum…I knew….and it scared me to my core because there was no going back. Greyson and Parker were napping and I was alone on my computer reading and I couldn’t stop shaking because I knew. My face and my keyboard were wet from tears, my whole body was shaking, my head was shaking, my hands were shaking….and they didn’t stop for weeks.
I wanted to stay in bed all day but I couldn’t because I had Greyson and Parker to take care of….for so many days I just wanted to stay in bed. Every morning before I even realized I was awake I would immediately start crying. I had terrible thoughts…I remember thinking “Parents whose children have cancer are lucky- because Cancer can go away.” I had to talk myself into running on most days….I couldn’t understand the point of running…since my child was Autistic. I ate because I needed calories to nurse Parker…but everything made me feel sick. Nothing made me happy anymore…not even US weekly (it’s OK to laugh now). I stopped reading and google’ing about Autism because I didn’t want to read about it anymore. I hated Autism's stupid guts. I was scared my friends with kids wouldn’t want to hang out with us because they might think their child could catch Autism. I dreaded those awkward conversations I needed to have..."So, Did I tell you my hairdresser is moving to Oregon?..Bummer, right? Oh, and speaking of bummers--- it turns out Greyson might be Autistic."
I hated Early Intervention Preschool because it was not the preschool experience I had hoped for and dreamed about. I hated going to speech therapy (this is before we found the Talk Team and Teacher Amy!!!) because Greyson hated it there and in our 20 visits of therapy- he said maybe 5 words total and mostly just screamed because he was forced to sit in a chair.
I continued to go through the motions of life... preschool & speech and ABA…. I searched for people who had been down this Spectrum road that were happy and positive…but I couldn’t find then…and sadly, I thought that meant they didn’t exist…
BUT THEY DO….and I’m here to prove it…and I’ve found other like-minded Mother’s I am happy to call friends who are also Warrior Moms.
I don’t know the day it all changed….but one day…my life felt like mine again..I felt like me...and then I started laughing again. Black and white turned back into color....and here I am today.
I share these details with you in case you were wondering how we got to where we are. It wasn't always happy or easy....I also share them because I know there is somebody, somewhere that needs to hear them because they are embarking on a journey of their own.
I'm not looking to set any records today. I just want to ask if you can please do that thing you did so well before... so willingly. Share our story. Share this post...share this blog...Put it as your Status Update on Facebook....and Pin it on Pinterest. Help me get the word out.
It's not just me asking...