Friday, February 26, 2010

Am I at fault?

A dear friend posed the question, “What are your areas of weakness in raising a kid with special needs?”

Me? Weaknesses galore. I can certainly admit it. I suppose my primary fault is over-protectiveness. Case in point: Elliot came down with a cold three weeks ago – and when Wee E gets a cold, it is nothing to shake a stick at. But, what do I do? I immediately pull him from school and he’s now been vacant from said classroom for THREE WEEKS. It will invariably turn into an upper respiratory infection or a horrible pneumonia (as it always has in the past) if he is further worn down by 4 hours per day, 5 days per week. We’ve had the therapies in house…we’ve toyed with OT and PT and ST here at home, but really, have accomplished nothing. I spend more time chatting with said therapists (as I rarely have adult interaction) and they leave. So, to school he goes and wow, do they work him! It’s fantastic.

But, fantastic is only fantastic if my fragile boy is healthy. He goes, he becomes sick and he’s out for a month! I have now received the district supervisor call, “Um, Michelle, Elliot has been at school for 10 or so days this last semester…do you want to reinitiate in-home services?”

“Well, no…if Elliot is sick, I really don’t want people in my house anyway!” I only pull him out when he’s sick, or when he has a surgery scheduled and needs to remain healthy prior to the procedure. It has been a really hard winter from a health standpoint.

I don’t think the general public understands just how sick a child with Elliot’s needs becomes with a common cold, with a silly gastrointestinal flu that put him in-house at two hospitals for a MRI and an EEG…vomiting for 8 days solid. After that was said and done, it turned out to 'only' be the flu and his brain (although his brain has other issues) was okay. He weighs 23 pounds. He has a feeding tube to help with an additional diagnosis; he has no gallbladder; his liver has fought fibrosis; his spine has been corrected. And sadly, he cannot speak; he cannot walk and he’s pushing four years of age.

So yes, overprotective. If I cannot speak for Elliot, who will? But, do I take things to the extreme? You bet…and really, I just wish that I could step back and let him enjoy life just a little bit. I wish that I could take Elliot to the grocery store (he has a special affection for the grocery store, although he won’t eat solid food); I wish that I could have accepted the birthday party invitation on his behalf, taken him and let him enjoy the party; I wish that he could realistically be in a school setting 4 hours per day, 5 days per week…

But Elliot, a 32-week preemie…a boy that has undergone multiple surgeries, a boy with little to no immune system, needs to be protected.

So, we’ll alter the IEP. We’ll send dear Elliot to school three days per week and see how he rolls. He is far, far behind from a cognitive standpoint – from a gross motor standpoint, and Wee E needs to be in school – if only for three days. And what will I do? Well, momma bear will worry her little head off each and every day that he is there. I’m trying to find a happy medium.

4 comments:

amy flege said...

you go mama bear!!! i only have mayson in school 2 days a week. she is not medically fragile like sweet lil E is either but the only thing she is learning at school is being with other kids her age, etc. all the "learning" comes from me at home. hang in there! love ya!

luvmypeanut said...

Alex was the same way when he was little. He was about 5 when he finally caught some breaks. And we also started IV IG which has helped immensely!

So there is light at the end of the tunnel!

marketing said...

Oh!!! yes buddy but don't do it again...
endodontics specialist

Imsa said...

Hi, have you tried immunoglobulin to boost his immune system? My son Victor has a immune deficiency and gets a weekly dosage of Subcuvia immunoglobulin. His health has improved since we started him on this med. He still gets sick really easy, but it rarely gets critical anymore. We also give him daily inhalations with cortisone (Pulmicort) and at the slightest cold signs, Ventoline and acetylcysteine.