The New Year is all about looking back and reflecting on the year that is coming to an end, while looking forward to a new year, new beginnings, and new goals. We knew that 2019 was going to bring significant transition and change for our family. It wasn't something I was looking forward to because I don't particularly care for change. Regardless of my feelings on the matter, change was going to happen and we needed to deal with it with as much grace as we could manage.
My philosophy on life tends to be laugh at life or pull up your big girl pants and muster through it. Whining and crying doesn't change the situation. So when our oldest son was all set to graduate and head off to college, I figured this was no big deal. We had raised a kind hearted, respectful, hardworking, civic minded young man. It was time for him to move onto the next phase of his life. I was excited for him. Proud of him. It was no big deal.
Except it was. It was devastating for me in a way I couldn't have anticipated or imagined. I was tearful and weepy on and off for months. Out of no where. I would be washing dishes and burst into tears. He would be moody with senior-itis and I would retreat to my bedroom to privately cry and lick my wounds. Everything was intensely painful and personal. It felt like I was losing a part of my body. Part of my soul. I was losing my baby.
As a result, in hindsight, most of my focus and energy for the first half of the year was invested in trying to manage these feelings, this transition, and this change. I probably wasn't the best mother, wife, or friend. I was in mourning but not fully recognizing it.
We were very concerned how our oldest son graduating and leaving for college would impact his little brother. In the past, they have been very close. He was our youngest son's hero. He idolized him. They drove to school together every day for two years. They marched in band together. Our son going off to college would impact us both emotionally but also through the daily routine and structure which is so important for our youngest.
Over our oldest son's senior year, he struggled with his relationship with his brother. He was late to come to this stage of acceptance that his father and I had already had to navigate. Although he loved his brother, during his senior year, our oldest wanted his brother to be "normal", or "typical" for all his important milestone events that he was experiencing. I don't know if he recognized it at the time but he was embarrassed by his brother - his brother who was too loud, too excited, lacked personal space, touched people, got in their conversations, got in their faces. Couldn't he just stop! Couldn't he just act like everyone else? The reality was, no, he couldn't. He could only be himself. This phase of their relationship was hard on all of us who were all dealing with our own transition and grief. It wasn't always fun to live with us.
This year was also the year that we would finally get answers regarding our son's diagnosis. For thirteen years, we had searched for the WHY? We had a laundry list of supposedly unrelated symptoms and disorders. For years, I kept asking if we were missing something. Could these be a sign of something bigger that we weren't seeing? No. I was always told no. Could his scoliosis and the previously undetected, resolved Spina Bifida be related to his physical developmental concerns. No. One was skeletal. The other was neurological. They were not related. Could the drooling and speech be related to the low muscle tone and joint laxity? No. They were unrelated to one another. And on and on and on...
Finally, a new neurology physician assistant decided that she wanted to repeat the genetic screening that had been completed twelve years earlier but using the latest technology and screening tools. And what we found was life changing. We had our diagnosis, CHD3 Gene Mutation or Snijders Blok Campeau Syndrome, and suddenly everything made sense. That laundry list of supposedly unrelated symptoms and disorders WERE related. They did make sense. They were all of the symptoms of our previously undiagnosed condition. Yes, the scoliosis was related. Yes, the joint laxity and low muscle tone were related. Yes, the speech issues and drooling which were unique and different were spot on, 100%, related. And yes, the autistic tendencies and behaviors that we experienced in spite of his highly social nature was 100% related. We had answers to a thirteen year old mystery.
Now that we had a diagnosis, and our son was thirteen, soon to be fourteen, I started asking what's the next step. Where do we go from here? How can we ensure that he will be not only self-sufficient, but also independent, happy, and successful post-high school? His path to independence will most likely look very different from his brother's. What services are available to assist with this? What supports are available to assist with this? Where do we go next?
We met as an educational team to discuss those next steps. The medical/neurological team told us it had nothing to do with them because it wasn't a medical issue, it was an educational issue. If you've been reading my blog for any length of time, this is not a new issue. The disconnect between the medical world and the educational world in relation to diagnosis, treatment, and assistance with children (and future adults) with special needs is criminal in my mind. IT IS THE SAME CHILD! How are they unrelated? The issue boils down to funding. They are funded differently. The diagnostic tools and requirements are different. Intellectually, I understand all that. As a mother that has had to fight every day since my child was two weeks old for answers and help, I just don't get it. As you can tell, it makes me angry. Very angry. I am intellectually gifted, highly educated, and economically independent and still, it has been a struggle for me to support my son in all the ways that he has needed me. How do people without those blessings do it? How do these children get the help that they need? How do they grow into their best version of themselves?
Anyway, the educational team met to discuss our next steps because our son's next IEP would start to include transition components to help him better prepare for graduation and self-sufficiency. Based on the conversation, the new diagnosis, and team feedback, it was decided that a full re-evaluation would be completed and that autism screenings would be used for the first time to see if he had any qualifying features. Long story short, at the completion of the screenings, our son was found to be highly functioning on the spectrum. He now has an Autism diagnosis. So all of you that have asked me over the years if our son is autistic, I can now tell you that yes, he is. The autism diagnosis opens up the door for future transition services that previously would not have been available to him.
As for the neurology team? They very diplomatically feel that they would not necessarily agree with an autism diagnosis but understand the "education" necessities of that diagnosis. We nodded and smiled through the appointment but know in our hearts it is an accurate diagnosis. They see our thirteen year old son who comes to every appointment with two parents who tag team keep him in check. He has been taught by those two parents what is appropriate public behavior and what is inappropriate public behavior. They see him twice a year for an hour in the best possible scenario because we believe in setting our son up for success. They see a boy who has received early intervention and therapeutic services (OT, PT, and speech) since he was nine months old. They see a child who was raised by a master level teacher who minored in early intervention herself who has worked every day of her life to ensure that her son is as successful as he can be. Do they see the meltdown days? No. Do they see the days where his brain can't put all the pieces together and he bounces from activity to activity to thought to thought with no organization or connection? No. Do they see the days when he is fixated, almost obsessed, by an idea that he can't let go and can't move forward from? No. Do they see him in crowded, noisy events where he spins in circles and touches people he doesn't know and invades their space and interrupts their conversations because he's so overstimulated by the event and the excitement of the moment? No. Were they there when it took us ELEVEN years to successfully watch a movie in the movie theater because it was too loud, too big, too dark, and too emotionally overwhelming for him? No. Are they there when he overeats, overreacts, and can't self-regulate at family and friend events because he's so overstimulated and excited to be there? No. No they aren't. But we are. And we will continue to be there. And we will continue to work on these skills until one day, no one will ever believe that he has an autism diagnosis or has to ask "What's wrong with him?" or "What does he have?" (and yes, people have politely asked us that).
Fall brought about those big changes. And guess what? They weren't that bad. Matter of fact, they were good. Really good. Our oldest son moved into college 2 1/2 hours away. Our youngest took the field in marching band for the first time without his brother. I am now my youngest son's ride to and from school every day. And we are all surviving. Our oldest is loving his program of study at college. He gets a break from all of us and the intensity that comes with living with us. Our youngest not only survived his marching season but was pretty responsible and self-reliant about it. Many of the older band members stepped forward as a support and resource for him when needed. (I love band kids! They are the best!). By taking my son to school and picking him up every day, I lost vital prep time in my classroom but gained valuable one on one time with my son. He now his an increased window of time at the end of the day to organize his thought and be sure that he has all the materials he needs for homework at night. We have had very few incidents of forgotten homework, forgotten items. This is a huge step for him. He has stepped up and been more self-sufficient and self-reliant. He is growing as a young man after stepping out of his brother's shadow.
This fall, we also increased our son's ADD medicine by 1 mg. We were concerned that it would have an increased sedation effect. Unlike med increased in the past, it did not. He had physically grown so much that he NEEDED the 1 mg increase. His body responded very well to it and he has experienced increased focus.
Through all of our personal ups and downs, relationship struggles, diagnoses, etc, my one consistent truth and mainstay was my classroom and my role within that classroom. My one truth in life is that I am a good teacher. I "get" kids that many others don't. All of my almost twenty-five years in the classroom have been with at risk populations. I am very good at what I do. This isn't bragging. It's my truth that I know in the core of who I am. This fall, for the first time since I was a new teacher, I questioned my ability to effectively help my students. This year has been my most challenging in a very long time. Can I help them? Can I be enough, do enough? I have had to ask for help; re-examine how and why I do things; read and study topics far outside my venue of knowledge; and step outside my comfort zone. It has been an emotionally exhausting year.
The blessings that have come from this challenging experience is the addition of a phenomenal third person in my classroom. She has helped organize my room and my resources. She has become a friend and someone that I rely on. I also know that if the kids coming into my classroom, with all my experience and understanding of kids from at risk populations, are this challenging for me, then we as schools and communities need to start examining how we support teachers and classrooms. Social-emotional learning must become a significant priority if success will be found within today's schools. You can believe that I will be an even more vocal advocate for these changes within my region. I will also continue to research and put into place the best practice that research is supporting, to help my kids find success.
And as for the boys and their relationship...
Distance can make the heart grow fonder. They have discovered a common love for Nerf gun warfare. At any moment, my two six foot - plus sons can break into full on Nerf war. Such laughing and yelling and pandemonium! It's beautiful. Dangerous for their father and I, but beautiful.
And through it all, my dear, sweet steady husband supports us, loves us, roots for us, and stands for us. Without him, none of us would find the success that we continue to find. He is our voice of reason. Our calm in the storm. He is our touchstone that keeps us centered.
I wouldn't ask for a repeat of 2019. I'm glad to see it come to an end. But the challenges of 2019 have brought about some serious growth and changes that we as individuals, and we as a family needed. Whether we wanted them or not. Dear 2020, please be kinder and gentler to us! We've grown enough for now. We could use some peace for awhile.
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