In Monday’s post, I referred to a letter I sent to Jack’s pediatrician regarding our concerns about our sweet son and I would like to share it with you.
Dear Dr. R,
A few months ago, my husband and I met with you regarding Jack’s behavior. What began as bad tantrums, perfectionist/OCD tendencies, interesting ways of expressing himself, and a strong intellect has spiraled into a very concerning situation. My precious Jack has emotional breakdowns daily. These are not tantrums, but complete meltdowns that can last for hours leaving him exhausted and begging to be held out of fear of not understanding his inability to cope. Some days are “milder” than others with these fits lasting only 30 minutes to an hour. Most days though he goes from one emotional breakdown to the next – for hours on end – sometimes we can identify a trigger, many times we cannot. Suffice to say I have been asked by other parents and teachers if he was having a seizure or had broken a limb on numerous occasions – that’s how bad and concerning these breakdowns are.
He can solve geometric shapes puzzles, recite dozens and dozens of books from memory (including their authors and illustrators), identify states on a map, sound out words, and build complex systems for a child his age (figures out that pieces of different trains/toys can be linked together because parts of them are magnetized), but cannot answer “yes” or “no” to a simple question and cannot choose between two objects – “would you like to wear a red shirt or a blue shirt, Jack?” Simple questions like this are never asked in our household for fear of the aftermath and anxiety they cause our son.
Jack can detail Scripture and Bible stories to the letter, identify dinosaurs by their Latin names and count to 100 but cannot eat an orange without breaking down because of the texture, cannot get to sleep at night without a rigid and demanding routine, and, lately, can hardly sleep at all. He never takes a nap.
He can tell you the next song that is about to play on a song list based on the last song he heard, identify nocturnal animals, draw correlations between logos, places and books but cannot go through a diaper change (using the potty is out of the question) or dress himself without thorough instructions and a lot of assistance.
He can scale a ten foot climbing wall (which he views as a puzzle), but cannot make it through our house without walking into door jams, banging his head into counters, or falling out of chairs when asked to sit still. He also has a difficult time making eye contact. Throughout the day when I speak to him, I have to say “Jack, please look at my eyes when I speak to you.”
He can identify every color and animal you can imagine (I mean everything from maroon to an orangutan) but has a difficult time relating to children his age and cannot walk into stores, malls, or even preschool at this point without having a breakdown that lasts for hours, and sometimes days.
Throughout the day he has to bang his head (thankfully on a soft surface), bounce on his bed (on his bottom), and rock in a swing in order to cope with things that you and I regard as “normal” – dropping a Cheerio on the floor, stacking books on a shelf (they must be in a very specific order), skipping a word in a story (something as inconsequential as “a” or “the”). He can rock, bounce, or bang his head for hours on end if I don’t coax him to another activity.
He has a difficult time understanding emotions. For example, when we do the Sign of the Cross (we’re Catholic) “Father, Son and Holy Spirit,” he scowls and says “the Holy Spirit is angry.” Why, we have no idea. Another example is when we very calmly ask our dog to go to her bed or tell her “no” (we never yell), Jack falls apart and starts pounding his fist in the air saying “Bad! Emma is bad! Emma is angry!” Again, we have no idea why he says this and have very gently tried to explain that Emma is a dog and sometimes, just like people, she makes a mistake and needs to be corrected, to no avail. He genuinely does not understand.
Jack is also developing phobias/fearful fixations, including our dog (the sweetest, gentlest, most tolerant creature you have ever met), fire drills (they had one at preschool, and though the other children didn’t enjoy it, Jack had to wear sound proof earmuffs just to cope and has spoken about it every day ever since – it was several weeks ago), and bugs (he panics whenever he sees one).
I found out recently that Jack’s school had to bring in an additional teacher (who serves as the special needs religious education coordinator for the parish) to his classroom just to help him transition from one activity to the next (transitions are very difficult for him), to help him stand in line, and to sit still during circle time. We have spoken extensively with his teachers and the preschool director at his school, and they believe, as we do, that Jack has special needs that require attention.
As all of this is going on his brain is growing – rapidly. In order to keep up, I have been homeschooling him at a kindergarten level which he is blowing through quickly. I am up til midnight most nights planning curricula, activities and lesson plans to keep up with his mind, while also trying to sort out his developmental struggles, taking care of our 6 month old baby, managing our household and my husband’s weekly travel schedule. We are exhausted and nothing we have tried in order to help Jack has helped him, in fact he is getting worse by the day.
Our hope is that you may be able to lead us in the right direction for social, behavioral, and developmental assistance and/or therapies. Our son is a treasure to us and is incredibly gifted, but is struggling so much to cope. We trust you and will take your advice to heart.
Thank you, Dr. R, for taking the time to read this letter. May you have a blessed new year!
Over the past year, I have sent this letter to friends and family members, doctors and therapists to explain our beautiful boy and the challenges he faces. It has been a great tool not only for advocating for our son but also for opening up conversation and talking about autism. And I hope it will help others, too!
Are there any tools, articles, blog posts, letters, or resources you have used to share your child’s unique needs with others? If so, please share in the comments below!