Catwmn
New Member
Things in our household have gone to C*&P over the past week.
I have been without internet due to a satellite issue so I've been checking email and doing minimal internet reading on my treo. Don't get me wrong...I'm THANKFUL for my treo but it's VERY hard to do message boards on, and practically useless for any type of internet research type stuff. Today the internet is working again sporadically so we'll see how long this lasts.
Aaron's condition continues to deteriorate at a heartbreaking pace.
He is now having MANY different types of seizures MANY times a day, and at night.
His behavior is completely out of control, and I have had MANY emotional breakdowns this past weekend due to the highly stressful environment I find myself in now.
I have called his Neurologist and his new Epileptologist and Neurosurgeon, AND Psychiatrist and NOBODY will help us. The Neurologist says this regression and behavior is "common" in a child with severe epilepsy and Autism Spectrum Disorder and it is basically something "I am going to have to learn how to deal with"..She seems to feel like as long as he is no longer having STATUS EPILEPTICUS episodes and ending up in the hospital that we have his seizures under "control"( his Epileptologist/Neurosurgeon also agrees with the Neurologist) but I SERIOUSLY beg to differ on that. .
This of course has left me with one option. Putting him back in school. I haven't done it yet....but I have written a 4 page letter to the head of the Special Education Department requesting new testing for him and a new placement OUTSIDE of the general education classroom.(This letter is posted in the Special Education 101 forum and I would appreciate it if you could read it and let me know what you think.) We have a meeting on Wednesday morning to discuss options.
This of course leaves me feeling like a horrible failure as a mother. I had such high hopes of homeschooling Aaron, but his behavior and aggression are so off the charts that he is a danger to me, as well as himself. (This child actually BIT me yesterday and drew blood!!) Saturday he got away from me in a parking lot and almost got hit by a car!!
His Psychiatrist DID say that we could admit him to a residential treatment facility but just the thought of doing that makes me ill. Surely we haven't reached the point of institutionalizing him yet?? The psychiatric switched him from Risperdal to Seroquel, which is an atypical antipsychotic and he is on a pretty high dose, but it so far has had NO effect on him. So the Residential center is starting to look like where we will end up in the end.. Since we are on Medicaid this means he will go to a STATE Residential Treatment Center (RTC) (Which is in Dallas which is close to 300 miles from here) which is what makes me NOT want to do it. Those places are AWFUL. I would seriously rather handle this myself than ever put him in a place like that. How could I cope with my child being institutionalized 300 miles away from me???
My hubby is basically useless to me for support lately....
He is now making constant excuses to NOT be home so he just doesn't have to handle any of this...which leaves me here alone with 3 kids dealing with all of this by myself...which is completely unfair to me, and to the kids....
When he is here he refuses to help me with Aaron and spends most of the time in the bedroom watching TV. Seriously...it's really pissing me off. But when I talk to him about it his excuse is..."but you handle all of this so much better than me.."
Well of course I do...I don't have a choice!!
This whole situation is seriously screwing up everything....it's ruining my marriage, and most of my friends are afraid to even come over because of the way Aaron has become...it has left me feeling very lonely and lost.
I feel like I am living in a nightmare....white knuckling it through every day....looking forward to bedtime as soon as the kid wakes up....
This isn't what I signed up for....not at all..
So there it is....in a nutshell....
*sigh*
Just really needed to vent..