So here we are on day six of Nik being home with an upper respiratory infection as well as a skin infection at his g-tube site. We’ve taken some road trips to the doctor when his breathing got a little scary and pumped him full of antibiotics to help the infection. Poor little guy has been through the wringer. He’s rebounding fast though and I hope (no, make that PRAY) he can go to school tomorrow!
I must interject here —MAJOR KUDOS to the moms that home school their kids, whether with or without any disabilities! I have thought about it but don’t know that I have the metal and emotional stamina to do it effectively without a whole lot of frustration and resentments.
But, my time at home with Nik this week has gotten me thinking about some important things besides the immediate health concerns. Namely, what do I do with Nik in all those waking hours between giving meds, tube feedings, changing diapers and just plain old playing with him? Maybe I am getting caught up in the trap of “keeping up with the Joneses” as I read about moms doing their home ABA programs and RDI and such. I‘m so new to the autism game that I don’t know what those things really are —beyond some vague theoretical understanding —or how to begin to use them. How do I begin to learn some simple things to do at home with Nik so that he’s not just left to his own devices for a large part of the day?
I can’t shake the feeling in my gut that there is something else I should be doing with Nik/ for Nik besides encouraging and celebrating the small milestones. Don’t get me wrong, I absolutely know the value of doing those things —but isn’t there more?
How do I begin to get my son’s newly increased attention span and awareness of his surroundings to work for him? How do I begin to work on learning language and self-help skills with a child who won’t look at me with any degree of regularity? At school they are starting to work on a PECS system for Nik but I’ve not gotten any instruction on how to begin at home.
How do I begin to understand the sensory issues that may come into play with Nik that keep him from eating by mouth or that cause him to have complete hysterical breakdowns with no apparent cause?
I’ve got a call into the behavioral psychologist we’ve seen in the past for some of Nik’s cyclic feeding issues. We haven’t seen her since the autism diagnosis was made official. Meanwhile, I’m here with Nik and wondering if I am doing enough.
This post isn’t just a rhetorical rant from my psyche; it’s a genuine SOS to all you moms out there who have already walked this path. I would love some input on good resources for concrete things to try with a three year old who does not yet walk, does not talk, doesn’t have the most consistent fine motor skills, and the attention span of a, well, three year old. Cognitively, no one really knows where Nik is yet. Personally, I think he’s a smart little guy who takes absolutely everything in and tries to figure out how it all works. Music is a big motivator for him, as are toys that light up.
Help, please? You can either respond by posting here or by directly emailing me at firstname.lastname@example.org. Thanks!