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I met Connor’s sweet mom in the What to Expect spin off group in 2016 when we were both expecting. Some of my friends frowned upon joining groups like that because “they could drive you crazy” but I have no regrets. I have met wonderful ladies in both the August 2013 group and February 2017 group.
Connor’s mom Karen recently shared her son’s diagnosis story with CNNH after years of fighting and advocating for him. Her video hit close to home and made me cry, you can watch that video here. I was so touched by their story that I wanted to share it with my readers and help continue to raise awareness!
My first born, Connor, wasn’t like the other toddlers in his daycare. He didn’t respond to consequences, wouldn’t follow instructions and was aggressive towards peers. When the behaviors began getting worse, and parents started to complain, we were asked to start sending him to another daycare right before his 3rd birthday.
I talked to his pediatrician about the situation and I was dismissed with a casual, “boys will be boys” response. The next daycare tried as best as they could but still the behaviors persisted and kept gradually getting worse. This care center referred us to the Intermediate Unit for our county, which then led us to “Wrap-Around” services.
We filled out what felt like a million questionnaires, and eventually received the “early-intervention” services Connor had qualified for based upon a “Social-Emotional Delay.” The issues didn’t stop though and all of the people who had been working with him had no ideas.
“You’ll be waiting awhile…”
By 4 years old I was hounding his pediatrician, showing him all the paperwork which was met with staunch rebuttal that these facilities are too sensitive and their need to document “every little thing” has nothing to do with any medical condition. At this point I was shaking the reports in the doctor’s face…
He threw a rock at another child’s head! Made him bleed! And didn’t CARE?!?!?! How is this NORMAL? After this altercation, the physician passively referred me to a “Developmental Specialist” but added the caveat that “you’ll be waiting for a while.” *sigh*
My husband and I continued to attempt to manage Connor’s behavior through the Wrap around support services but nothing was getting better and every day after a full day of work I would go to pick up my son and would be handed a litany of Connor’s wrong-doings for the day. There were hardly ever ANY good days.
It was emotionally draining
It was sad, depressing and completely draining. I felt like a failure. Like no one thinks there’s anything wrong with him but I couldn’t fix him. I couldn’t stop the aggression and the sudden explosion which would always occur without warning had everyone involved completely dumbfounded.
By the summer (when he was 4) we were asked to leave the second daycare and this is when the ball really started rolling. He was dismissed from the 3rd daycare within 6 weeks, then dismissed from his 4th daycare in under 4 weeks. My husband and I were pulling our hair out.
So many tears ~ So much frustration ~ And NO ANSWERS. We eventually found a daycare that managed to keep him from November of 2015 through the Following August when he left for Kindergarten… And what a shit show that was.
He got into a lot of trouble in Kindergarten
My 6-year-old son got suspended… twice… IN KINDERGARTEN. They knew he had problems; he had all the appropriate documentation to substantiate the need for the level of services he was receiving but still…they were blaming my son for their failure to adapt to his needs. Sending him home, keeping him from his Free and Appropriate Public Education.
I was LIVID – I called anyone who would listen – took my case all the way up to the Superintendent of the school district. I had to go to these IEP meetings like I was going into battle.
And I had my team consisting of my Husband, Connor’s Wrap-Around BSC, The Director of the Wrap-Around Organization, our Educational advocate and a guest appearance by the director of the after-care program. All to tell them how much they were screwing up.
We tried medication without a diagnosis
At this point we had to try medicating him (without any kind of diagnosis) just to try and get the aggressiveness to stop. The hitting, the flailing, the destruction and then… he started eloping.
He couldn’t take it anymore, so he was just running away from them. Between the Battle IEP meetings and the medication things got a little better and he made it through Kindergarten.
He was dismissed from the first summer camp I picked for him within 4 weeks. He ended up barely surviving the second choice, only because summer ended before they could eject him. Next, 1st grade ~ What a disaster. His behaviors had escalated to the point where his classroom would have to evacuate multiple times a day because he was throwing the desks around.
By October, they suspended him again and I lost. my. mind. Once again, emergency IEP meeting with all hands-on-deck. This time, I was going for blood and was going to get it because these fools kept screwing with my son.
He was moved to an Emotional Support Program
They FINALLY offered us the option of transferring him out of the General Education classroom and into the “Emotional Support” program. This was by far the most beneficial thing the district had done for my son ever and has helped him a great deal.
Emotional Support consists of being taught by a special education teacher with multiple “Instructional Assistants” who are there to act as 1:1 agents for the kids. It was also around this time that we were referred to a Developmental Pediatrician by a family friend who took us RIGHT AWAY. The developmental pediatrician saved my son.
It had gotten to the point where something drastically needed to change, or we were going to need to send him to a boarding school for “troubled” children.
We finally had answers!
The Developmental Pediatrician read through the many, many questionnaires in their intake packet and asked A LOT of questions. He cared enough to try and understand everything we had been through and why Connor’s behaviors were so… erratic.
This doctor ordered genetic testing, and physical testing of his brain and also referred us to Neuro psychology for the Autism (and other conditions) evaluation. Finally, we started to have hope and we started to see results. Six months after we began treating with the team of doctors at CNNH we had a formal diagnosis of Autism Spectrum Disorder, Disruptive Mood Dysregulation Disorder and ADHD.
We also received the results from genetic testing which shows which kinds of medications will work better with Connor’s liver enzymes thus limiting the trial and error portion of medication selection and management.
He is THRIVING now
Even though he still struggled during the summer between 1st and 2nd grade, he is doing SO MUCH BETTER now. Once we received the diagnoses everything changed. Everyone altered their perception of how they interact with him which in turns alters his response to others.
The anger, frustration and confusion are gone; now it’s just us and his team of care-givers doing our best to give him all the tools he needs for success. It took 5 years of frustration, tears, confusion, anger and periods of despair to get to where we are now.
Throughout all that time we knew one thing; we loved our son and we weren’t going to give up on him. The answers were out there, we just needed to find the people who had them. And I am SO incredibly grateful for our friends, family and especially CNNH for getting us to where we are today.
You can find Connor’s mom here: