My husband TJ and I are high school sweethearts and we had been married for four years when we were blessed with our first surprise. Caleb was our first baby, the first grandchild on both sides, the first nephew, the first great-grand...the first. We were so thrilled for his arrival (as was everyone else).
Caleb was (and still is) incredibly sensitive to sounds. I couldn't use the garbage disposal, the vacuum, or even blow my nose. I couldn't raise my voice to call to my husband in the other room. I couldn't even change the tone of my voice to talk on the phone. It was impossible for him to function when workers were cutting trees or trimming hedges. I brought these things to the attention of his pediatrician at 2 1/2 years along with his inability to use his pronouns correctly (he'd say "you" in place of "me" etc) and his constant echoing, and his reply was just "we'll wait and see, there's a lot of growing to be done by age 3."
And then right smack dab in the middle of our concerns, our little Lilly was born. She came right on schedule and was BURSTING to enter this world. She was full of life and love, and LUNGS; that girl could tell you what she wanted WHEN she wanted it. And Caleb wanted none of it. He was always VERY affectionate/cuddly, but he would only give her kisses for praises and claps. And when she would cry, he would run in his room and have an absolute meltdown. He would scream and cry and rip the sheets off his bed. And he wouldn't stop until she was done. And thus was the beginning of the phrase "don't make Lilly cry."
And one day while I was on the phone with my mom (just before Caleb was 3 years old), as I was crying about what to do with him, my mom said that my dad wanted to talk to me. My dad is a special education teacher at a high school and he works with students who have mild/moderate disabilities (and at the time I was working in the same district with an adult transition class of a similar special needs group). Before he could even say the word, I said "You think he has Autism, don't you?" And he replied "Yes." And after months of defending our pediatrician's opinions and defending our instincts as parents, we decided we needed to do something more.
The signs of Autism weren't completely black and white to us with Caleb at that time because he WAS so affectionate, he did share joy, he could speak and use lots of words, he was a very good eater and not at all adverse to textures/touch, and he wasn't aggressive behaviorally. But his language, his anxiety regarding sounds, his intense engagement with stimulating/spinning toys, and his inability to relate to his peers were enough for us to change pediatricians and get on a waiting list for a neurologist.
In the process of our NINE MONTH wait to see the neurologist, we decided to go to our school district. We had him assessed for services and he was approved for speech therapy and a special day preschool class. That first IEP was so nerve wracking. It was surreal to see "Autistic-like behaviors" written all over the pages....and I cried the whole way home after they suggested he attend school the following Monday. I knew it would be for the best, but I was so scared for him.
And then our appointment came with the neurologist. An hour appointment of recalling the past and relaying the present resulted in a diagnosis of Autism. If you can believe, it was more of a relief than anything else. In many ways I feel as though I always knew, but regardless of how I felt, I had been blessed with a beautiful little boy who would thrive.
Caleb just had his 5th birthday and will be starting kindergarten this fall in a special ed program designed for children with Autism. While he is ahead of his peers academically, the strain of his anxiety, his constant need of prompts, and his lack of social skills require a bit more focused instruction and aide before he is fully integrated into a general ed classroom. We are so looking forward to him experiencing this new environment. We're starting new therapies soon and hoping for some social skills classes. He's been improving at OT and his speech at school has been reduced to group sessions because he's improved so much.
Along the way there have been so many small blessings that are HUGE to us. I could tell you the first time he included me while coloring Larry the Cucumber...the first time he said "I love you mom", the first time he climbed the rock wall, and even the first time he used the word "I" correctly. He also has amazing Autism super-powers like naming every US president, every state, the planets, the streets we drive, playing songs on the piano, reading, writing, and spelling all before kindergarten.
He and his sister have been improving their relationship slowly but surely. They laugh and giggle (and scream and shout). She knows how to push his buttons but sincerely cares when he's in trouble (she's also a great-big-two year old who doesn't mind getting her way all the time). There's a lot of love in our house, a lot of loudness, a dash of screaming, a pinch of frustration, and I wouldn't have it any other way.
I'm hopeful for the future...I'm hopeful for today, hopeful for tomorrow, and hopeful for when my husband will come home from deployment next January. I truly believe that Caleb is exactly who God created him to be. I am so blessed to be his mother and am so blessed to be loved by him.
Sharon "Love bears all things, believes all things, hopes all things, endures all things." 1 Corinthians 13:7
Relate to so much of this. Finn prefers anything to the tune of the ABC song. Otherwise not interested. :)
ReplyDeleteI feel like the beginning has been the most difficult so far. We still have to do things a certain way every.time. And now he detests some of those old songs I used to sing because they get stuck in his head.
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