Autism, Intellectual Disability & Adult Transition

Posted on by Theresa Harvard Johnson
This is a bit personal, but I really want to share it. I am not looking for advice in this post, a list of scriptures or spiritual counsel. I also know how to pray. All of those things are on the backdrop of what is written. I am simply sharing in hopes it will encourage others facing similar situations.
When you are preparing a child with challenges for adulthood, absolutely every single situation is different. Everyone can’t be looped together and herded through a process. What works for one parent’s circumstance often does not propagate to another.

I wouldn’t wish this process on anyone because it consumes your whole life for a season.

When help is limited and you really don’t have or never have had strong family support outside your own, it’s a living hell on many fronts. Yes, I said that. We need to stop playing and tell the truth. It’s not all good, but I am grateful the Lord is present through it all. Many parents of challenged children live on the outskirts of extended families, church communities, friends, etc. People just don’t ask how you are doing, what you need or how they can help. (Check out, Living With An Autism Diagnosis)

I have been blessed in this area over the years (and I still am) with people who came alongside to help me “like family,” but many are not. And to have to face these tough times of transition can be even more devastating.

The Good Fight

I am very resourceful praise God. I like a good fight, and I am a researcher at the core. Struggle tends to pour out a spiritual grace for me in areas of advocacy despite myself. However, dealing with courts concerning guardianship, agencies, health professionals, and even helpful organizations (down through the years) can be so frustrating and exhausting that you just want to say the heck with it.
It’s easy to get jammed up trying to keep track of EVERYTHING and if you don’t understand the paperwork, can’t afford an attorney and have no consistent, sincere help in legal or medical arenas… it can be an utter nightmare. In my situation, I had to enter the good fight at a different level by becoming THE EXPERT concerning my son.
That included digging for resources, asking questions of all kinds, moving past NO… over and over again just to obtain the answers I needed to help my son. (Check out, My son JJ, Autism & Loud Holidays)
But who is really there to help people (especially in certain communities) learn to ask the right questions?

Despite my frustration, I’ve been blessed and favored in some of these areas. Plus, my background as a journalist taught me where to look, how to follow clues and  for answers no matter how many times I receive one I cannot accept.

Getting Stuck & Giving Up

It is easy to get stuck and feel as if you want to give up!

The hunt for information, support and help can be grueling and overwhelming, especially for those with little support.

I understand how families and caregivers get stuck, become depressed or throw in the towel. The real tragedy is that the person who stands to suffer most are the the loved ones needing the help.

On the flip side, you can also have all the paperwork, the right agencies, talk to all the right people, have all the procedures, policies, etc. in your understanding, and still find yourself on the edge of sanity by the piles of next steps facing you.
I cannot wait to get my law degree and certifications for advocacy for the disabled and elderly. I CANNOT STAND the struggle this population of people and its caregivers face.
Advocacy at this level is a SKILL, not just a heart to help. Those entering into it should be acutely aware of this truth!

Deciding to Help

I’m not going to let what I learned go to waste. If you are in this place, I want to encourage you to do what you can to help others as well.

Sometimes we have to be the help and the resource we didn’t have — in whatever capacity we are able.

I decided TO HELP as many people as I can in marginalized groups in my community. Again, some people don’t know the right questions to ask, the agencies to go to, the networks to get in… and they cannot make sense of the laws, policies, processes, etc.

They are not sure how to plan for their child’s care and future as an adult. This is extremely different from the birth to 17 years.

I love my son (all my children) more than life itself. I am grateful to have a mind that is capable and a heart that is pulled toward solutions.

God Sees You

GOD SEES YOU. HE SEES ME. HE KNOWS OUR STRUGGLE.
Right now, I am a part of several support groups for parents with disabled children. For me… THIS IS A MUST.
I strongly encourage you to connect as well. Just hearing and listening to the stories of others lets me know I am not alone; keeps me grounded because there are people in FAR WORSE situations that what I face; and finally, I am realizing how much I can help them… because of all that I have done for my son without a law degree.
God is using my CRAZY situations to help them with theirs; and vice versa. Be encouraged today. We don’t know what tomorrow will bring. What we do know, however, is that the Lord will often give us answers — EVEN BIG ONES – to empower us to move through.
Make the most of ALL OF YOUR TIME!

2 Corinthians 1:3-4, “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”

 

Navigating This Life

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