11 February 2012 ~ 3 Comments

The Divining Dragonfly: My Journey with Autism (Part 2), by Cindy Caprio

You can read Part 1 of this article here

Age 2

One day I was so upset with my son not having any words, it brought tears to my eyes. He was in the kitchen pointing and grunting at the cabinets. I lifted him onto my hip as I typically did to figure out what he needed. Everything I pulled out he would hit and grunt, than started crying and squirming in my arms in rage. I sat him on the counter. Gently holding him on his waist, trying to find eye contact, I was also crying: “TLC, please talk to mommy. Please, I am begging you. What is wrong? What do you want? Please, I need you to talk to me.” This was a day I will never forget.

Shortly after this episode I contacted the pediatrician and he put me in contact with Early Intervention.

I wasn’t sure what to expect from Early Intervention. I have never in my life even heard of this let alone knew what Autism even was. Sure I’d heard about it in passing, but as a childless mom before TLC it’s just one of those things you don’t really pay attention to.

The first meeting with Early Intervention was quite intimidating. Five specialists came to my home to observe and test my child. I will never forget sitting on the other side of my room, feeling sorry for my little boy as I watched each lady do something different with him. One lady was typing on her laptop; another took out toys and was using them to interact with him; then another lady pulled out some flash cards with words, numbers and pictures. The other two were playing around with sensory stuff and working on TLC’s fine motor skills. I felt helpless. I felt scared. I felt like running away from all of this. I just wanted them to all go home. Of course, as always I felt scrutinized as though perhaps I was a bad mom or even overindulging him – Was this my fault?

One week later, the “team” came back to the house to discuss the results with me and basically acknowledge everything I had noticed all along and then some. They are not allowed to diagnose children. Basically they help with the disabilities, parent education and resources. He most definitely was eligible for Early Intervention. And one week after that he was assigned his Service Coordinator, and that’s when all of the help began. What seemed like hell in the beginning turned out to be the best thing I could have ever done for him.

It wasn’t just the void of words. There were so many things that seemed “off”. I always noticed him doing quirky things such as tip-toe walking, spinning himself around till he got dizzy and laying on the ground as though he enjoyed the room going around in circles. I could not have play dates. Each time I tried it was an awful experience. All the other moms would be having coffee and chatting, and here I was being dragged around by my two-year-old son so he could have the comfort of mommy as we just sat while he watched the other kids play. Just watching them made him happy. He had no desire to join in. We would go to indoor play centers and he just went from one thing to the other, not knowing what to do with himself. His favorite thing was just to run away, trying to escape from it all. Playgrounds were the same – he didn’t like the swing, had no interest in the climbing structures or the other children. He would either cling to me, or his favorite thing would be to take his shoes off, then run as fast as he could away from everyone until he found an area with flowers – at one point he was obsessed with those.

Obsessions – this was another thing. He had certain obsessions that he would get stuck on. His very first obsession at age two was the vacuum cleaner. He ran to it every day, trying to mumble the word “vacuum cleaner”. The next obsession became fans. He would find a fan and would stare at it even if it wasn’t turned on. If it was turned on, he could sit there forever, just watching it go around and around. We had moved into a home where all of the rooms had ceiling fans. He was in heaven, running through the rooms on the first day of the move, pointing and trying to mumble the word “fan”. Another obsession he had was lining up his cars perfectly. He wouldn’t play with them, just had to have them in order. He then became obsessed with turning the cars and/or trucks and trains over so he could spin their wheels. The one thing that really stands out would be his obsession with the area in a toy where the battery would go. He would point to the screw and try and mumble “battery”, never playing with his toys but trying to figure out how to get the battery out. I thought maybe he was going to be an engineer.

Sameness was another concern. He had to have the same rituals and schedule every day. If something wasn’t the same, it would cause a meltdown that would last for hours. I couldn’t do anything to control these meltdowns. It was so difficult not being able to comfort my boy. It was also very depressing not being able to talk to anyone about this, even my husband. My husband thought I was exaggerating or he would say: “He’s two. That’s what kids do at his age.” One ritual we still perform is at bed time – it’s rather adorable and something we all look forward to doing with him. We gather the family (even if we have guests) and we all go into his room. He makes sure the drawers are all in, closed tightly on the bureaux, his closet door shut all the way, his stuffed animals in the same order on his bed. He looks around the room to fix anything that may be out of place. The lamp is on and we all sit on the floor and TLC gives mommy a kiss and a hug first, daddy gets the second hug. If we have guests, they are next – and then it’s the dog. Daddy tucks him in. The lights are turned off at the same time and we say the same words as we close the door: “Goodnight. We will see you in the morning. Love you”.

Getting back to Early Intervention, I would like to share a letter from his Service Coordinator who had been working with TLC for about six months at the time this letter was written. This letter was being sent to a Pediatric Behavioral Specialist to have him tested to see if he was on the Autism Spectrum. Initially, the Service Coordinator wasn’t quite sure if he had autism or not as she would say “I can’t quite put my finger on it”. Sometimes he had red flags and at other times he seemed typical with perhaps some behavioral issues, except obviously the speech delay that he had. So here is the letter:

To Whom It May Concern:

It has been my pleasure to be TLC’s Early Intervention Service Coordinator since February of 2008. He was initially seen for an hour every other week and then it went to two hours every other week at the family’s home. In addition to this, he began a weekly community-based playgroup that also included an hourly parent group. He was assessed six months later and continued to qualify for Early Intervention services due to a delay in expressive language. The services TLC currently receives are the following: weekly home visits to focus on receptive and expressive language skills, play skills, social interaction, attention to task, as well as parent education. He attends a two-hour structured weekly playgroup with peers from the community, and the parents separate for a portion of this to attend a parent group. In addition, he attends an hour-long speech therapy session each week to work on articulation.

TLC learns primarily through verbal directions and cues. He attends to verbal language and will then imitate this language in a rote, scripted way. He has a difficult time attending to language in a conversational way and struggles to answer open-ended questions. His play skills are immature, and he resists variations in his play. TLC is unable to attend to language and activities on another’s agenda. TLC is socially slow to warm up to others and reluctant to be separated from his mother. We often work on developing problem-solving skills, as TLC has a low frustration threshold.

TLC has made nice progress with answering simple familiar questions. He will use rote phrases during playgroup to request when prompted. He is now more easily engaged with toys and activities during home visits and playgroup.

Sincerely,

Service Coordinator

Of course, it’s one thing to know something in your heart is right, but it really hits home when you see something in writing from someone else’s perspective. Sometimes I would hope that my observations were exaggerated, or perhaps imagined. Maybe I was wrong and was looking into it too much. That is until I read and digested the words of this letter. I was really frightened to visit with this doctor. What was he going to do with him? To him? More tests? More scrutinizing? More evaluating? My poor child! But in my heart of hearts, as badly as I felt, I knew this had to be done in order to find the right diagnosis so we could continue with services. TLC was about to turn three and once a child turns three they are cut off from Early Intervention.

I call this the “three year window of opportunity”. There is such a short time frame from when a parent notices red flags to get help early on as soon as possible. If I didn’t go with my motherly intuitions and question his behaviors and lack of speech with his pediatrician, he would have never gotten Early Intervention Services. If it weren’t for Early Intervention, I don’t think my son would have progressed as nicely as he has.

I found the best and most highly recommended specialist to take my son to see. We actually had to set up three appointments. The first was to observe him. The second was to test him and the third was to have a meeting with myself and my husband.

The testing was very similar to Early Intervention, just in an office setting and the doctor also did some written scale type tests. The doctor also did a physical to see what was happening with his Gross Motor skills.

Several weeks had passed since TLC’s final assessment and it was time for the meeting with the doctor. We were finally here. It felt like an eternity. That gut-wrenching feeling was killing me. I just needed to know what was going on with my boy and where to go from here. Walking into his office was going to change our lives forever.

Forward several hours later, and I called TLC’s Service Coordinator with a lump in my throat and tears in my eyes: “TLC has Autism”. I said it out loud for the first time after hearing the news. When I hung up, I was so sad. It felt like all my hopes and dreams for him and us had gone down the toilet and been flushed away forever. I really felt like I was grieving, walking around for months in a depression – not very good for someone like myself who suffers from Bipolar 2 disorder. I didn’t realize until several years later that this is the first phase after finding out a loved one has been diagnosed with an Autism Spectrum Disorder: “The Grieving Period”. TLC was diagnosed with Pervasive Developmental Disorder, Not Otherwise Specified (PDD/NOS), which is a diagnosis that is classed as an Autism Spectrum Disorder (ASD) .

I didn’t know anything about what this was. I headed to the library and got out as many books as I could find and read for months about what this diagnosis was. I was in the grieving period for probably three months.

During this time, with the help of Early Intervention, we were in the process of getting him into an Integrated Preschool Program, as well as outside services for Speech Therapy and Physical Therapy.

Exactly two days after he turned three-years-old, he was accepted for a three day a week program. Our health insurance covered ST and PT for him, as well as two days for outside services

You can read Part 3 of this article here

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3 Responses to “The Divining Dragonfly: My Journey with Autism (Part 2), by Cindy Caprio”

  1. Julie 24 February 2012 at 9:24 pm Permalink

    Cindy is so candid, real, honest, caring and approachable in her writings – anyone who is dealing with any kind of special needs with their own children will relate and be inspired by her struggles and triumphs.I’ve had the pleasure of knowing her these last 3 years because of my son having the same diagnosis and have found a kinship together dealing with life in general as moms and “divining” women who take care of themselves as best they can. I admire anyone who can candidly write about their experiences – I am looking forward to part 3!

    • Sarah Downing 24 February 2012 at 9:42 pm Permalink

      What a lovely comment, Julie:-). I couldn’t agree more and I am very happy that she is so brave as to share her story with us all.

      I’m also looking forward to Part 3:-).


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