Deirdre started Kindergarten classes on Friday, September 7th. She gets home-bound education during weekdays for two hours each day. Mr.Farina keeps on being her teacher, which is something that she loves. This time she has a complete group of therapists, which provide PT, OT, ST and AT. We are happy to say that finally her assistive technology needs are
being addressed by an ATP, and that her speech therapist is someone who
knows what to stress, how to reach Deirdre's attention, and is fighting
to make Deirdre come back to the level of communication she should have
by now when it comes to strangers. Her OT keeps on helping her master
the mvement on her thumbs and index fingers, so she can be as
independent as possible through the use of switches and the like.
Some details still need to be taken care of, but at least the basics are running and our Deeva is happy and honing some skills. Her IEP needs changes as some details need to be specified... Hopefully an IEP meeting will happen soon.
Overall, we find it very sad and discouraging when there is no real interest in solving the issues of a little girl that needs specific things to reach goals... especially when they are her right. We hope that the professionals that handle her therapies now can accomplish what we have been trying to make the Newark Public Schools understand: Deirdre's illness requires prompt attention. If she looses a skill, it is very unlikely that she can get it back. Spinal Muscular Atrophy is degenerative. Thus is the importance of all the therapies.
At such a young age this is very critical to maintain skills. NPS has been wasting valuable time in bureaucracy, thus harming her educational outlook by ignoring her needs. When parents are educated and know what is the law and what are the procedures to make their kids really productive, people should listen. It is sad that what Mommy has been preaching for 2 years is what now the new specialists are seeing and trying to solve... Why couldn't NPS address these needs when it was all laid out very clearly? It is a big shame. And Deirdre becomes the victim of such lack of interest in her as a person and as a student.
Still, even without the adequate support, Deirdre loves school. People must be reminded that although she cannot talk or move, her mind is intact. She understands when people speak to her, and she has her own ideas, opinions, feelings, and dreams. She wants to be an animation artist! Facing daily challenges because of the lack of a sound support group is beyond unfair. She has a thirst for knowledge, and for expressing herself. She matters. She exists. We keep fighting so communication and independence comes true very soon.
