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Dear Siblings – What is Your Role in our Family Autism Future?

Dear Siblings – What is Your Role in our Family Autism Future?

Last updated on: April 25, 2017 at 8:01 pm by Dilshad Ali

Dear Siblings – What is Your Role in our Family Autism Future? 2017-04-25T20:01:05-04:00 Dilshad Ali

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H, D and A on a road trip last summer

This is Day 25 of the Ali Family #AutismTruths – April 25, 2017

Dear A and H and other autism siblings,

Last night I was at a training seminar to learn about how to apply for SSI (supplemental security income, a form of social security) benefits for your brother once he nears the age of 18. There are a lot of things we need to do for him in the coming year as he approaches the age of majority – SSI, consider guardianship (apply in court to become his guardian and figure out what kind of guardianship is best for him) and a lot of other details you really don’t need to concern yourselves with at your age.

There’s a whole lot going on with your brother and for your brother that aren’t pertinent to your lives – yet. But they will be, some day.

I sat at a table last night with a bunch of friends who I’ve been seeing at different seminars, events, dinners, doctor’s appointments and in the halls of schools for more than a decade. We knew each other when your brother and some of their kids were in school together at the tender ages of 4, 5, 6 and 7.

Back then we attended parent and family classes to learn more about autism, how to write an IEP (individualized education plan), different programs that were available to our kids and sibling activities for you guys. Over the years, I’ve attended medical conventions and doctor’s appointments, learned about some of the medical issues that come with autism and the latest research with these parents.

Now, many of us are gathering around tables like these – to learn about applying for SSI benefits, about changes to Medicaid waivers, determination and the never-ending waiting lists, about work incentive programs, postsecondary options for our kids and what housing and living options are appropriate and available to our guys.

As parents, we have learned about special needs trust funds, medical directives, wills, power of attorneys and, of course, guardianship – all as it pertains to our autistic children, who are now teens and young adults.

Why am I telling you all this? Surely this doesn’t pertain to you. But, it does.

At the end of the seminar last night, after the speaker had wrapped up and parents had started leaving, the parents at the table where I was seated lingered with me. The inevitable question loomed in front of all of us – what happens when we die? Each one of us at the table mentioned the names of our other children and talked about how we hope you all can be a part of your sibling’s autism future.

We’re considering all this and handling all these things. And, we plan to stand by and be there for our children, which includes all our children, for as long as God gives us life. We all agreed that we hope to foster as much independence and transfer as much responsibility over to our autistic children as they can manage. The right to self-determination is a very precious and important one indeed.

But, A and H, though the story hasn’t concluded and the final chapters haven’t been written for your brother, we have a practical idea right now about what kind of supports he will be needing throughout his life. What I don’t know for sure is how you two will play into all of it, though I do hope you’ll remain a big part of your brother’s life as you all become adults.

Your Baba and I have talked about this, though there are clearly many more discussions to be had between us, with you two and with all of us. D needs to be a part of these discussions. I have so many questions in my head though about how it’ll all play out. There is a part of me that thinks – you all are brothers and sister, and this is the family we’ve been given. You must somehow be a part of your brother’s autism future.

Another part of me though wants you to walk your own path into the future, pursuing whatever educational, work, faith and fun goals you will have. I want you to get married and create your own families. How will D factor into all of that? How does he want to factor into all of that? How does D want his life to be?

You guys are too young, and your Baba and I just don’t have the answers. But we’ll get there somehow as a family, through our love for each other and the grace of God – both of which I pray will sustain all of us until the end.

I just want you to know that you all are my kids. All of you.

Love,

Your Mamma.

Autism Awareness Month 2017

#autismtruths

Ali Family Autism Truths

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April 24, 2017

Piecing Together the Puzzle of the Future - As a Family

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April 26, 2017 Finding Room for it All in Autism Land

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