My Special (Ed) Child (Pt 1)
So let me start this with a disclaimer*. I do NOT have a disabled child. Not in the sense that people like to think of disability. People look at children in wheelchairs, limbs folded into themselves, gazes staring into heaven and see a disability. They look at the little kid standing in front of a sprinkler, arms flapping, jelly glasses hugging his face and yelling something inaudible and they see a disability. They even look at the little girl coming through the grocery store with her mother, a cochlear implant attached to hearing aid, decorated with charms and they see a disability.
So like I said. My child is not disabled. He doesn't have flapping issues and his speech delay is mild. His arms and legs work fine (better than fine in fact) and his hearing has improved significantly since he had ear tubes placed. So then what makes this completely normal, non-disabled kid special (ed)?
Arthur is a little bit quirky. He is just a little bit different from other kids his age. While other boys and girls his age seem to engage in shared play, he tends to prefer the company of himself. He will play and engage with his cousins and siblings, whom he has known and played with his entire life, but other kids, "outside kids" are a different story. These kids are all but ignored. The most acknowledgement they get is possibly a mimic of some of the phrasing they are using.
For example: I took Arthur and younger brother David to the park to play a few days ago. As we arrived another family was also arriving. That family had a boy about Arthur's age and a daughter about David's age (3 and 1). The little girl was following big brother around the park, much the same way David does with Arthur. With this particular sibling group, however, the big brother was engaging with little sister. Giving her brotherly instruction on life. Showing her the ropes on general playground etiquette and so forth. Arthur, on the other hand, was doing his very typical, be blatantly and completely unaware of baby brother. Now I'm not talking about ignoring a person. You would understand if you saw it, but there is a very distinct difference between "pretending" not to see a person or be aware of them, and genuinely being unaware of the people and things around you. Arthur is so focused on...something (to be honest, I couldn't actually tell you what he is focused on) but he is so focused on IT in such a determined to engage in IT kind of a way that he becomes completely, entirely, absolutely unaware of his surroundings including people and situations.
So back to the playground, this little boy sees Arthur, and naturally wants to play with him. It definitely helped that Arthur was dressed in his PJ masks costume. (He loves wearing it because he loves that song "where is my tail" and this costume happens to have a detachable tail).
So the little boy is yelling "PJ Mask, hey PJ Mask!" and when that doesn't get Arthur's attention "Gecko, hey Gecko!" which again, nothing. So the boy is yelling "hey Gecko, I'm CatBoy!"
To which Arthur responds "I'm Catboy" in monotone mimic.
To which the boy replies "No, I'm Catboy!"
To which Arthur responds "I'm Catboy."
So now the boy is frustrated and says again "Hey let's play! Do you want to play?"
Which Arthur responds with the obvious "Where's my tail?" (he had left it at home).
"Let's play Gecko, Gecko! Gecko! Let's play Gecko!"
"Where's my tail? My tail!? Where's my tail?"
So now I'm intervening telling Arthur for the 10th time that he left his tail at home and he will go retrieve it shortly.
"My tail! Where's my tail?!"
"It's at home, we will get it later."
"My tail! Where's my tail!? Where's my tail!?"
"Let's play Gecko! Let's play!"
We don't have a medical diagnosis, we do have a school diagnosis. We know what it is, but we haven't gotten a diagnosis yet, because to be honest my husband is hesitant about getting a diagnosis. I feel for him and I want to give him space to process this in his own time. I've had a long time to prepare for this. Since childhood I have heard a handful of words from God about what my future would hold. Then I have watched as each of these things that God has given me a heads up about has come to pass (all of them completely unable to be self fulfilling mind you). God told me when I prayed over the decision of whether or not to even date my (now) husband Dan that I would have to understand this relationship would be very joyful and very painful if I embarked on it. That's an easy enough prophesy, most marriages have rough patches, so moving on. When I was 12 years old I heard clearly from God that I would mourn over my first child, that the birth of my first child would cause me to grieve. I'd say it was safe to say that one came true. The first prophesy I ever heard from God was when I was 7 years old. Even as a 7 year old I prayed about my future children. God told me that one of my children would be autistic. NOT down syndrome, not asthmatic, allergies, weak heart, diabetic, paralysis, spina bifida, deaf, terminally ill, or any of the other myriad of disabilities that I was aware of at that time in my life. Autistic. I had time to prepare. My poor husband was caught off guard, so I feel it's only fair to let this settle with him.
This whole process started with my mother. Again and again, day after day, I would pick him up from her home to a myriad of questions and suggestions.
"Why doesn't he speak up? Why doesn't he speak at all? You need to have him evaluated. He should be going to speech therapy, Michelle. Have you talked to his doctor about this?"
To be honest, I hadn't talked with the doctor about it and had no intention of talking with the doctor about it. The doctor saw him regularly, if he suspected issues wouldn't he let me know about that?
I finally gave in the harassment and spoke to the doctor about a speech therapy referral. I knew almost immediately that this action was going to set us on a tidal wave path that would sweep us down the river. Maybe that is part of the reason I hesitated so long. I was swept down the river by the system once before. I had one child swept right out from under me by the system. I was fearful and cautious of wading into this new raging river with my second precious child in my arms.