Stories from the Road

Welcome to our journey.....

If life is what happens when you're making other plans, finding out your child has autism is life on steroids…..when everything suddenly goes sideways, your bucket of dreams spills everywhere, and you get lost trying to find your "inside" voice.”   While you can pick up any of a million books on how to do it “right”, nothing prepares you for real life like parenting a child with Autism.  Throw away your books, you just need a lot of love, luck, support, and, of course, courage.  Buckle up, you are about to find out who you are, who your friends really are, and how far your family is willing to go to help you.

They say it takes a village to raise a child.  This may be true, but the right village matters.  And villages don’t always come cheap, easy, or with the right schools or services.   We have been blessed with good jobs, supportive families, and friends that get it.  Not everyone lives in this kind of village or has access to the right services and trust me, when you have to decide between paying rent and getting your child the right care is a heartbreaking decision for a lot of people and it happens…..Every year that goes by without the right services is a lost year that can’t be made up later. 

Thus the decision to use my passion for running to help other families who are not as blessed as we are to get access to the services they need.  I support the Doug Flutie Foundation in Boston and Autism Speaks which does work all over the country.  In the scheme of things, it is not world peace but if I can help just one family create a better life for them and their child, it is totally worth it.  And I feel so so fortunate to have a chance to do it! 

When, my son – who is now in the 9th grade - was in preschool, the school suggested we send him to speech therapy.  While the therapy was very helpful, the most helpful advice was from a newly degreed therapist who suggested we have him tested for autism.  After alot of denial (ours) and searching for how you actually did that and a couple of weeks of testing (his) he was diagnosed with Aspergers, a condition that almost no one talked about or knew much about 10 years ago.  Amazing how far this has come in our journey! As we started planning for the future, it became clear that we needed help, a lot of help.  We realized that early help was crucial and that for a child with autism, time is perishable. 

Our story has many facets that we will tell over time but for now our story starts with…..

The school experience…..

When he was ready to start school, we sent him to the same private school his sister had attended for 7 years. About the same time he was diagnosed with Aspersers.  As we tried to educate ourselves and the school on what he needed, it soon became clear to everyone – after daily “come and pick up your child” phone calls, and the time that they tackled him the hallway and pinned him down so he wouldn’t leave the classroom….. that they considered it a discipline problem vs a real condition and it wasn’t a good fit for him or us.  So we kept looking – we couldn’t find another private school that worked so in 2nd grade we sent him to our local public elementary for the next 5 years.  We were amazed – our local school district has loving teachers, caring administrators and compassionate nurses – and he had 4 (out of 5) great years with good teachers and one with a teacher that ridiculed him in front of the other kids, refused to teach him, and after many discussions with the school, found himself unemployed.  So while most of the teachers were great, the most challenging part of the day was recess, and right after that was dealing with the parents of the kids in his class that bullied him.  Not fun, not fun at all.  More on that later…..

For 7th grade we were concerned about transitioning to public Jr High so we moved him to a private school which offered an individual learning program.   We didn’t realize this meant one on one tutoring without any social interaction, 4 hours a day, 3 days a week…..Some kids may thrive in this environment, for a child on the spectrum, it’s the wrong village. 

By chance we found about a school in our town that serves kids on all points of the spectrum, from low functioning to typically developing kids.  The learning style is quite different from the normal school.   At the start of the year, rather than dive into core curriculum, the students spend time understanding their personal triggers and adaptive coping skills.  Beyond an education he has gained life skills that will allow him to succeed in group settings and the confidence to pursue many different paths.   As junior high students, personal accountability is a skill that is taught and practiced.  Students are required to self advocate and when necessary, take responsibility for the dog eating the homework.  

We are excited to see where he decides to send himself in life.  For now he has found the right village and again we are blessed….but nothing lasts forever and of course the next step is the matter of high school.  The journey continues, stay tuned…..

 

 

 

 

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