The "R" word and the "S" word

The "R" Word

Over a week ago, on April 8th, a man was sent to my home to assess Kearney's educational needs and her home environmental support needs. This home visit was prompted by my pleading with the school district to provide us with some solid home based support to help Kearney's school based interventions be carried out more consistently in the home and also to give us some direction on how to more effectively decrease problem behaviors. What we are facing however is an unwillingness by the school district to provide the funding for an effective home based program and instead a shocking recommendation that Kearney's needs would be best met in a residential school setting. Hearing this recommendation by this specialist absolutely blindsided me. "Least restrictive setting" is written into the sped laws for a reason. I always assumed that a residential placement would NEVER be proposed until all other options have been exhausted. Kearney has NEVER had any additional services beyond the 6 hour school day. No after school program, no home based program (since her initial transition from home to school at age 5), NOTHING. Given the severity of her cognitive impairment and the difficulty she has acquiring new skills and maintaining them, it has always baffled me that whenever we ask that she gets a longer school day or some other services such as an after school program for social skills building (since she can't participate in sports or brownies or any of the activities available for typical kids) we are told that these services are simply not available. As of last September, she has been attending an excellent private school that does have after school program and also has a consulting service available to provide a home based program. It all cost money though. And although Residential school is very costly, the state is obligated to share the burden with the school district for this, but not for additional home based services. Therefore, it could be less expensive for the school to send her away then to do what they can to help us keep her making progress at home. I am told to put aside my emotions and consider this from a purely pragmatic standpoint. Though I had not realized this, her age is a huge factor and that in just 1-3 years finding a good residential school placement will be considerably more difficult and then when she is over 22 finding an adult group living arrangement will be even more problematic. etc, etc etc..... Yes, these are valid points to consider. I hadn't prepared myself to be considering them this year. I thought maybe when she is 18 or so... Or when she is in her 20's or 30's or later (not at age 11). I always assumed we would keep her home as long as possible. Protect her for as long as we can.

I can go on forever about the emotional storm this has set off in my mind. Being told by a professional that "you are barely meeting her needs here," and "no one could do this alone." It was very upsetting but also what I've been saying for years and why I've been asking for help. Not for them to take her away. Even thinking about this proposal has opened up a new level of grief for me. The thought of losing what little connection I have to her even more is unbearable. But also the idea of not doing what is best for her is making it even harder for me to be unwavering in my preference to keep her home. What if the guy is right and she would make more progress and be happy in another more consistent setting. Would she be happier? A very experienced professional said to me, "for parents, the R word often inflicts more grief on parents than the A word." Since this was just one person's opinion and one who was hired by the school district who may have a financial motivation in this, his report requires a second opinion. I am relieved to have arranged for another educational evaluator (Dr. Frank Robbins- he is excellent, thorough and truly independent from the school, he will be hired by us and for Kearney, and he has done this twice before when she was younger) to come in and give an unbiased assessment of what he thinks would be best. Until then, I have to put any further thoughts of this into the back of my mind and refocus on the NOW.

The "S "Word

That's about where I was on Weds exactly one week after the shocking visit. I spent a week crying, not sleeping, and in a daze of confusion and worry. Then I came to a moment of peace and decided to have faith that I would know what to do for her. That was Weds April 15th. On Thursday April 16th, Kearney suffered from her first Grand Mal seizure while I was blow drying her hair after a bath. Autism is a global neurological disorder and epilepsy affects about 15% of kids who are Autistic. It is more common in those who are also mentally retarded and most often a first seizure presents during puberty. Despite these facts, I wasn't prepared for this. I was in denial that this would happen to her. After the terrifying seizure (her lips turned blue and she went limp for a few moments after the convulsing in which I feared the worst) I spent the night in the ER with her at UMASS trying to comfort her through a traumatic series of bodily intrusions far beyond her comfort zone. As I lay there on the stretcher with her at 3a.m. holding her hand and stroking her back, the fear of losing her struck me intensely. I need to be there for this vulnerable being. I am her voice. Her protector. Her mother. She is like a 2 year old in an 11 year old body. A 2 year old needs her Mommy. How could I ever send her away? Who's gonna love her like me? Where does love fit into this equation? Is ABA more important? Or am I just being selfish? .....
....It has been about 36 hours since that first seizure. More than likely there are more to come. Another diagnosis lurking in the closet (epilepsy), more traumatic testing, and drugs with side effects to trial... I am overwhelmed with emotion and fueled with passion to help her.
A BCBA (certified behavioral consultant) from her private school is coming over to meet us this morning to begin helping to come up with a plan for some minimal home based services that the school district has agreed to fund at my demand. It is at least a start, though another team meeting is certain once the evaluator writes up his report recommending the R word instead. How things will proceed from here are cloudy at best. What I do know is that I am not giving up.