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| My son at the local children's museum |
I am tired. And overwhelmed.
When your beautiful little boy is in a room being assessed by a clinician, and you see him yell and throw every object placed before him, a little piece of you shatters. But he's angry, you want to say, because he wants to finish reading the book you took away. But now you see your son as the observer sees him, and the deficits are profound. Please please please, you mentally beg your son, engage with the toys. But your son is not interested right now; he wants out of the chair and out of the room. He screams loudly.
The neurologist gave us a letter of referral. Five months of intensive physical therapy, occupational therapy, and speech services, two to three times each week, with a followup neurology appointment scheduled in April to determine progress. And next steps. And then a diagnosis. It's all a jumble of words.
Lots of phone calls. A visit to the pediatrician for additional referrals. More intake appointments. The occupational therapist that tests our son says he has an immature grasp and delayed fine motor skills. She wants to see him two times each week. The physical therapist determines that he has "loose joints," and that his muscles are working twice as hard as is typically necessary to move. She wants to see him three times each week. When we outright ask the speech therapist where our son is with language development, she equates his language level to that of seven-month-old baby. She will see him three times each week and wants his hearing tested. Language and cognition are so intertwined at this early age that I am having difficulty proving to everyone that my little boy is cognitively fine.
None of the care providers will say for certain that our son will have a positive outcome with intensive therapy.
I was given instructions to begin "crawling boot camp" at home. My son first needs to learn how to properly crawl. The physical therapist showed me how to position him correctly when he is moving, and how to readjust his body into the correct position. She showed me how to manipulate his surroundings to ensure that he has to lift himself up. She does not yet know how stubborn my son can be.
It's a lot of work - the phone calls, the appointments, the therapies I do with both children at home, let alone the daily grind of just having twins! Recently, I stopped attending play groups with other parents because it pains me to see my children with other children. When I see other people's typically-developing toddlers I mostly see my own children's deficits. Plus I have difficulty socializing with other parents because while their toddlers run around and play, mine need one-on-one support. Admittedly, as the weeks and months pass, my son, while making small gains, seems to be falling further behind.
In my house, we celebrate every success. Last week my son learned to clap, and Yay(!) we clap with him. While my son cannot yet walk, he can now turn a corner while riding his little truck - yay for mobility! My son loves books and is willing to read more than just his favorites over and over - yay for something new! My son can now put blocks back in the bin - yay for helping Mama clean up! My son is willing to eat new things if I shove a piece in his mouth first and he accidentally tastes it while spitting it out - yay for fish! My son is babbling da-da-da-da all the time now - yay for not screaming! My son loves to be serenaded - yay for sitting on the exercise ball for core strength exercises while Mama sings to you! My son is hyper-focused on musical toys - yay for happily pushing the button that plays the alphabet song fifteen times in a row so Mama can take a break. My son suddenly has more facial expressions in his repertoire - yay for helping Mama and Mommy understand you! Yay for your adorable sense of humor!
My son is gentle, and funny, and he laughs a lot. He is easily excitable. He is mostly happy, sometimes frustrated, very sweet, and comfortable with our daily routines. He sometimes spaces out. He sometimes cries uncontrollably for no apparent reason. He clearly has significant motor and communication delays. He does not yet stand, but he sits and makes eye contact. He says "ah" and "da da da" and he closed his mouth and said, "Mmmm" for the first time yesterday. He does not look where you point, and he does not often mimic, but he does respond to his name. He belly-laughs when you repeat a word he thinks is funny. He no longer ignores the short Baby Signing Time video we watch daily. With prompting, hand-over-hand support, and multiple scenarios in which to practice, one time this week he signed "more" appropriately and on his own. My son thrives in quiet spaces. He is easily overwhelmed in noisy restaurants or crowded events. He splashes, flaps, and bounces so gleefully in the bathtub, and he snuggles so sweetly before bed. He knows how to brush his teeth and loves to have his hair combed and scalp gently rubbed. His crib is a peaceful, safe space, and he smiles contentedly at nap or bedtime.
Maybe my son will eventually catch up. Maybe he won't. But we will continue to celebrate the small successes because for him they are enormous.
