A Mile In My Shoes

Well, this morning we got off to a late start. We didn’t have time to practice self-help skills. Every day I like to spend a few extra minutes helping my 7-year-old practice the things he isn’t able to do independently – like dressing himself, climbing the stairs, pulling up and down his pants (as part of potty training), and of course communication skills.

My son, Stephen is completely non-verbal. Part of teaching him to communicate is not anticipating every need.  It takes patience to allow him to express his wants, needs, feelings, and thoughts. Continue reading A Mile In My Shoes

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I’ve been trying desperately to relax and unwind from a very busy holiday season. This is my son’s 3rd day back to school since Christmas, the house is a mess, I’m behind on chores, I don’t have meals made for my son’s gluten free, restricted egg and dairy diet, I have more work to do than energy…

Continue reading Shameless

Time? Where does it go?

Time? What Time? Multi-tasking while waiting in line in the school parking lot – working on my new adventure –  blogging about advocacy for children with autism and special needs Advocacy for Children with Autism and Special Needs- like us on facebook to show your support!

I’m sitting in my car with my son, waiting for traffic to pass – freezing – it’s 10° outside- my son is all bundled up and my jacket is unzipped – my gloves aren’t on either. But we’re making every moment count!

Continue reading Time? Where does it go?

A New Year, Complete with New Challenges and New Adventures #whyIsign

 

 

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.

Continue reading A New Year, Complete with New Challenges and New Adventures #whyIsign

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