We Must Do Better!

I logged on today to write something informative that would inspire parents, educators and the community.  I wanted to share something so insightful that it left you all aghast.  I just can’t, today.  I will instead share my Facebook post and I think you will understand. This day has left me more apprehensive than I have ever been and yet, I know, that I MUST dig deep and find that warrior within me to ensure my child has the best life experience.  I’m angry.  I’m frustrated.  I’m scared.  I’m a crazy bundle of emotions that only a select few, the chosen ones, will understand.  So, tomorrow, I promise more great, quality information.

But today, this is all I’ve got left in me….enjoy!

Jack’s last IEP annual review was today. The last one. The last one ever. EVER. He’s come such a long way. I’m so proud of him. Yet, we have such a long way to go and so many decisions to be made. I’ve never felt so inept and unprepared in my entire life.

I miss teaching. I miss being an administrator. I miss helping families through the special ed maze. I miss problem solving with teams. I miss my colleagues. All of it. I miss all…of…it. In the dusty parts of my brain, I think I believed that I would, one day, go back to it all. Maybe in a couple of years when Jack is settled. But, after listening to the transition experts today, I’m honestly not sure it will ever be possible. I think this is an important side effect that families with children with disabilities face that people don’t talk about.

There isn’t funding to help parents out. I get paid a small, very small, salary to be Jack’s caregiver, but I could never live on it. There is no low cost insurance available if you make over $10-12K per year. Finding caregivers is darn near impossible. Most day programs start around 8-9am and end around 3:00. That means I could work from 9:30-2:30. Educators don’t work those hours. So, the career I worked so hard to achieve goes down the tubes. And…I still owe a million dollars in student loans, okay, it may as well be a million.

I’m at the reinvention phase of life. I’m determined to grow a business to provide work options to other moms and dads that are in a similar boat. In late October, I am going to a conference that I hope is the catalyst to this. I’m also determined to stay in special education. It’s my fulfillment. It’s the fire in my soul. If you follow my blog or FB page, you can probably see that. Speaking, writing and coaching are avenues that I’m pursuing and I’ve received really good feedback on the material I’ve shared.

This isn’t a woe is me post, maybe it is, but it’s a post meant to be informational. This is the reality facing parents of children with special needs. I’m not alone in this. I can tell you at least 7 of my direct contacts who are in this exact same boat. Parents who need medical attention but don’t have insurance. Parents who worked hard their whole lives, paid into benefits program and have to leave their employment to care for their adult child only to face the challenge of trying to figure out how to survive with the limited hours they can work.

-We need better services for adults with disabilities.
-We need to support parents that continue to support their adults in the home environment.
-We need to pay caregivers an appropriate salary and offer them benefits so we can actually find help.
-We need to crack down on B******T disability, SSI and welfare claims and funnel that money to parents who are working their tails off to support their adult with disabilities.

My motto has now become…We MUST do better!

To the Good Fight,

~C

Please follow my Facebook page at https://www.facebook.com/Livingalifeofintent
Disclaimer:  There are exceptions to every rule.  Children and adults with disabilities are people with their own individual needs and desires.  The ideas and advice given in this blog are for your consideration only and should not be taken as legal, medical or educational advice, as every single situation is different.

 

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