It has been a long process to find the correct way to help Alex succeed in the world. We have been at a complete loss and I have blogged about it before. My Mommy instinct alerted me when he was 3 1/2 years old. He is now 7 years old, almost 7 1/2.
At age three, he had a difficult time complying. He was becoming a middle child with siblings who needed therapy on either side of him. The doctor told me that he mimicked his brother who is 20 months older and I was consumed with a baby who had many medical needs at the time. I suppose that is somewhat true since his sister quit breathing at a moment's notice and needed my immediate attention. But still, he didn't interact with other kids and he seemed much more challenging than other children his age. I took him to play dates 3-5 days a week and he rarely left my side. I thought I must be overly sensitive to special needs since my other son was recently diagnosed with autism. Alex had good eye contact and had an amazing vocabulary.
Then age four came and Alex attended Pre-K. I adored Gabriel's preschool teacher and she become my friend so it wasn't a question that Alex would attend the same school. His teacher had a classroom with half typical students and half non-typical students. She had a small class with two attentive assistants.
Alex had a very difficult time adjusting to Pre-K. He screamed each of the four mornings that we took him to school. He hit other children, didn't comply with the rules, and had a bad attitude about the entire process of preschool. Alex wasn't potty trained until he was 4 1/2. I blamed myself because like the rest of my life, I was busy with the other two children who were in OT, hippotherapy, aquatic therapy, and speech therapy. However, we managed to potty train him and thankfully he isn't in diapers any more.
His teachers noticed that he had issues with things. It was obvious but no one could figure out what exactly that problem was. I took Alex to the doctor and had a psychologist do an initial screening on him. Her answer to it all was - Alex is mimicking his brother. He is just an active four year old boy who needs a lot of physical activity.
I was left baffled. Surely, I wasn't wrong still, a year later, about my little guy?
On we chugged to 5 years old and we lived in Florida. Alex was placed in K because the programs are different here and rather than a transitional K in Iowa, they tend to retain children in Florida. Well, in any case, he started K and in January of that school year, the teacher sent home a letter stating that Alex didn't know his letters, the letter sounds, how to write his name, shapes, colors, etc... I was stunned. He was working on sight words at home and complicated math problems. I spent mornings in the classroom and many hours in the afternoon to help Alex learn to "show what he knows".
In February of his young five year old life, I asked the school to complete psychoeducational evaluations. I wanted an answer the meltdowns, the aggressive behavior at school, the defiance, and the social awkwardness.
At the end of the school year, around a table with a dozen people present, the school presented their findings. I was hopeful to have an answer. I received nothing. I was told that he had friends based off a checked list the teacher filled out. I should consider holding him back because he was the youngest child and he was struggling but it was only due to his age.
This time I was shocked. How could the school not see these significant issues? People around me reassured me that he was just an active, young boy. One person who is no longer a friend, stated, "what do you do wrong with your kids?" During this time, the liaison officer offered his unsolicited advice: spank him and he will change.
Alex's first grade year was a struggle as well. He made no friends. He didn't finish assignments. He had meltdowns and hated going to school. I asked his teacher if we should consider modifying his assignments or giving him social skills training of some type. She disagreed and Alex worked on his missed assignments during recess. He had no time to play or work on his social skills.
His teacher told me that Alex mimicked his brother and since he was the youngest in the grade, he was just an immature 6 year old. If I would stick to a routine and consequences at home, I would see an improvement. Since the teacher spends her day with him through the work week, maybe it was me. Maybe I was just a crappy parent and he was immature and that would improve with time. She asked me to consider retaining him in first grade despite his passing grades so he could mature. I seriously considered it because this teacher has tons of years of teaching experience and she knows 6-7 year old children.
Near the end of his first grade year, Alex was diagnosed with ADHD and OCD at a children's development center. He started medication and he seemed to improve. By improvement, he was able to comply at school and focus. If you want to know why I can't stand OCD jokes, it's because I parent a child with OCD and it isn't a laughing matter as the parent. It's a challenging disorder to work with, or against, as the case may be. He refuses to do many things because he doesn't think he will do them correctly. Have you ever watched a five year old work on writing his letters correctly? Alex would erase the paper so much, it would get holes because he couldn't form the perfect "D". He could not move on.
I worked on consistent parenting. I worked on consequences. I beat myself up for a lack of parenting skills. A family member suggested that since my sons have problems, it must be my parenting so maybe it was true. It can't hurt to work on parenting skills.
This summer I took the kids to Nemours Children's Hospital for Gabriel's EEG appointment. The neurologist looked at Alex mid-appointment and said, "he's on the spectrum too, right?"
Alex was working on his math workbook. He was performing complicated multiplication in a fourth grade book. He was fully engaged and didn't hear a word. He was 6 and doing multiplication in summer. Does this sound like many kids?
My face lit up. FINALLY! Finally, someone is listening to me without me saying a word. The neurologist handing me a stack of forms for evaluations that I've filled out a couple times before. While Gabriel had an EEG done, I filled out forms. The neurologist looked them over and asked me to make an appointment for Alex so we could start the process of figuring out what is going on with him.
Alex's neurologist appointment was two weeks ago. I'm numb. I can barely talk about it. I'm so torn. I have been fighting for almost four years to figure out how I can help him. I want an answer but at the same time, my heart breaks because I can't stand that anything is wrong with the precious baby boy who was born on August 9th in Miami. I feel my heart thick in my chest like I could rip it out due to the extra heavy weight I carry. I have tears in my eyes and I swallow hard so they don't fall on my face. I don't want my children to see me crying again. They will ask what is wrong and it will take me too long to think of a lie.
Alexander has significant markers for autism. He went to the OT and she confirmed the same thing with her evaluation. We only have one more evaluation to take him to and we will get the final diagnosis.
Today he brought home an evaluation his teacher filled out. His teacher's evaluation puts him on the significant level for autism as well.
I have two children on the spectrum. I am only waiting for the final words in a couple months. I do not know if I can bear to hear the words "autism and Alex" in the same sentence from a professional. It is one thing to know in your heart that your child has a disorder, it's another to hear it from a professional. It makes it final. It makes the reality jump in your face and you can't escape it and its implications. It means I have to mourn a piece of Alex that just won't be.
I'll be okay. He will be okay. He's still my precious Alex. I'll help my child and I hope some day, in the future, we can read this together and laugh. I hope he is able to succeed despite autism and with autism. It is my biggest wish.
I just want to hug you right now. You're an amazing mother...
ReplyDeleteI am glad you are getting some answers, but I can't imagine how hard this is for you. You are such an amazing advocate for your children and an even better mother. Sending you hugs.
ReplyDelete