I had Kenny's feeding tube backpack on him along with his hearing aids. Now keep in mind that Kenny gets sensory overloaded very quickly. This backpack, which holds his pump has some weight to it and he loves it! It kinda calms him down like a weighted vest would...so anyhow, we get called in to his speech therapy and he walked in like he was going to take on the world today! Head up with a little bounce to his step. He remembered to sanitize his hands and turn the light on in the room. I sit against the wall while his speech therapist sits at a table with him and does small games and letter/word sounds...today was the OO sound (like moo, look, book). He was really trying to form the sounds with his mouth and was working as hard as he could.
I was so proud of him, my little man who will soon be five...trying so very hard to learn to say words and do signs....and yet deep down inside, my heart was heavy.
Having to watch my son, who has had to fight for everything...including living, struggle to do what should come naturally.
Then I snapped myself out of it and thought to myself...yeah...he's gonna show everyone. He knows everything he wants and he'll be alright...he'll be alright.
He is already trying to say iPad, school bus, bowl, ball, and more...and the signs he's learning...melt my heart.
At the end of his speech therapy, she couldn't get over how wonderful he did and how much more connected he was with her. She felt that he was finally just starting to realize that when you put a word with a sound AND a sign, it all fits together. She was so happy with him and that he was a joy to work with...which made this momma very proud.
Now off to wait 15 minutes for our next therapy session...PT (the main reason for this post)
With the backpack still on giving Kenny his feed, and the hearing aids in, we waited for his physical therapist. She came out and again, Kenny knew the drill...walk over to the handicap button to open the door, press it and see mom 45 minutes later. But before he walked in, the therapist asked if the backpack could come off (her thinking it was a school backpack). I quickly reminded her that Kenny was getting a feeding through his g-tube and that, no, I couldn't take it off...but that he'd be more that fine to do PT with it on.
To make a long story short, we both thought that the backpack would act as a weighted vest and that he's be more focused (kinda like he was during his speech therapy earlier). My last words to her was that he did great in speech...very focused and tried very hard...and hers back to me? Well, it was more of a sarcastic...well...ok, we'll see.
End of the appt came...door opened and out comes Kenny, running like usual towards me followed by the therapist. Man, I thought to myself....she looked like HE worked HER rather that the opposite. She told me that he was just not paying attention...yada, yada, yada....but the backpack DID settle him down a little...yada, yada, yada....
We made some small talk about scheduling and then the hook, line and sinker...the biggest zinger ever....
...as Kenny and I were just walking away I hear, "you know...he's got the attention span of a flea."
Did I just hear an adult woman, whom I trust with my son, just say this to me?
So with the minuscule of time it took to take what she said to me, decipher it, and then comprehend it....oh, did I mention, I thought to myself..OK, there is some PMS going on...maybe on my behalf, maybe on hers. Maybe I'm being too judgemental (don't go off on her)...maybe she didn't mean it such a way where she totally made my son out to be...like that of a flea...(don't go off on her)...maybe she just meant he was preoccupied or something...(for the good of God, don't go off on her Michele). Then I thought back to a couple of sessions ago when I sat in on them...and how she was short tempered with him because he didn't understand what she wanted him to do. She held his face with her hands and got close and told him that he NEEDS to start PAYING ATTENTION...to LOOK AT HER.
All this thinking (within seconds of the comment) made me turn around and smile....I just smiled and told her that if she couldn't handle his flea sized attention in just 45 minutes, she definitely wouldn't be able to handle being his mom...God gave him to the right person!
I walked away holding my son who's heart is bigger than hers will ever be...and filed a complaint. I told the supervisor what had happened...that I didn't want her to get in any kind of trouble because maybe she didn't mean it in a bad and inappropriate way. Maybe she just felt THAT comfortable with me that she could be sarcastic and compare my son who has severe hearing loss, developmentally challenged, muscle issues, who's non-verbal, has microcephaly and a whole slew of other health issues to that of a tiny bug that has no meaning except to irritate. I just don't know. The supervisors jaw just about hit the floor. He didn't know what to say except that he was sorry. He was going to talk with her. That's all I wanted. Maybe she really doesnt know all that is going on with him...maybe she only feels like he is a normal child with some muscle tone issues...if thats the case, shouldnt a therapist (who works in the same hospital where ALL of Kenny's doctors, appointments and records are kept) read through and actually SEE what they are dealing with? There is so much yet, I don't want her to get into trouble of any kind...I just want her to know that this mom of a special needs child has had a pretty rough last couple of years...these weeks leading up to Kenny and Nick's birthday/Nicks Angelversary are rough on me. Its mostly about flashbacks and tears, with still some whys and what-if and guilt (yes, even after 5 years). So please don't say stupid stuff...its almost like calling my son retarded...it really is hard to handle.
I know this isn't the last time I'm going to have to deal with this. I just pray that Kenny's feelings wont get as hurt as mine did today.
What would you have done?