What will this year bring? More challenges with an under staffed school district? More budget cuts for special education? OR by some miracle, PROGRESS? I’m hoping (and praying) for the latter.
Our son, (who is legally deaf-blind) started the school year without his 1:1 paraprofessional. As parents, we had heard the news that the district had laid off ALL of the union paras (and almost the entire support staff for special education.) We talked about it and we decided worst case scenario we get to school and our son has no aid, then we bring him back home with us and he doesn’t go to school… That would be where we, as parents draw the line.
Our son is 7 years old. He is completely non-verbal.
Like many parents who first receive an autism diagnosis, we didn’t know what to do next. Piece by piece we discovered our son’s disability, like putting together a puzzle of neurological developmental delays.
By age 2 our teacher of the visually impaired from the Board of Education and Services for the Blind had begun to suspect a hearing loss. After a BAER (brainstem auditory evoked response test), follow-up tests with the ear nose and throat doctor, and repeated visits to the audiology department at the children’s hospital, the audiologist diagnosed Stephen with unilateral moderately severe hearing loss (legally deaf on one side) The audiologist told us that our son had permanent deafness that could not be improved with hearing aids. We have been using ASL with him ever since. #whyIsign #askmewhyisign
Just a year before the hearing impairment diagnosis, the eye doctor told us Stephen was legally blind. Stephen’s eyes had drifted apart and there were obvious signs of problems with his vision. Stephen has Cortical Vision Impairment. CVI is a neurological vision problem.Our teacher for the visually impaired informed us that combined vision and hearing loss made our son legally deaf-blind.
5 years later and after 4 years in the school district, our son still had no way to communicate with his teachers and classmates. Without 1:1 support an education for him was just not possible. What were we to do?
Thus began our adventure in ADVOCACY: the act of pleading for, supporting, or recommending…
We started networking with other parents, and slowly but surely the word was spreading… SOMEONE CARES!
Let me start by saying we live in a very low-income, under performing school district. That said, we love the teachers and the support staff we have. We wish, so much, that these people who work with our children tirelessly and compassionately would get the attention and support from our district’s superintendent and from the Board of Education that they are desperately in need of. These children deserve and are legally entitled to a meaningful education.
An EDUCATION that will “meet each child’s unique needs, and prepare each child for further education, employment, and independent living” -20 US Code 1400 (d) (1) (A).
This is our vision. These are our goals and our dreams for our son and for all children like him, who need special education. We want what every parent wants – to know that our child will be ok when we’re gone. We have spent so many sleepless nights worrying about the future, the financial strain of having a child with special needs, and how we will overcome the obstacles that lay ahead…
This year my resolution is to share some strength, some hope, and maybe some tears in hopes that someone is listening…