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How Many Battles For Autism Will Win The War?

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No matter where you are at this point on the autism journey, it has undoubtedly become obvious that this is the fight of your life. From the day your child is diagnosed, navigating those first few years, finding supports and services, entering school, fitting in with societal norms and expectations, puberty, entering the workforce, advanced education or vocational, transitions to the adult world, each can be a battle. The bigger question for me is when or will that battle finally come to an end.

As many of you know, my son moved into a Behavior Focused home a little over a year ago. There have been some struggles adjusting to a new way of life— for all of us. I still stand at the ready preparing to battle where and when needed. Throughout his life I have been his advocate and mother among many other titles. As a parent, it has been quite the educational process and often I learned on the fly or from the grace and support of other parents. I soon learned this mountain would continue to grow, test my strength, stamina and the battle fatigue that comes in waves. In every instance, I suit up for the climb ahead, hoping and praying that one day the mountain of struggle is reduced to rubble.

Given the numerous challenges I’ve faced from day one of seeking and securing the countless supports and resources my son needed, I somehow thought that would change as he reached adulthood. It has in some ways, but relatively few. I don’t say this to be the prophet of doom and gloom but in my opinion, knowledge is power and can enhance future plans. If you are the parent of younger children or even those beginning middle school or high school, your best defense is preparing for the future battles to come. 

In one of my previous blogs I talked about obtaining guardianship if your child will need assistance, as my son has and will for the rest of his life. It can be a lengthy process, so start it well before they turn 18. Speaking of which, most of our children start to see the end of services as their educational path winds to an end. My son was in vocational, so his services through school ended at age 21, though it varies state to state. Something to keep in mind as your child moves through adolescence into adulthood. 

Now at this point as parents, we have spent most of our time in IEP’s, speech, OT, PT, social skills, ABA, play therapy…..the list goes on and on. At 21, the resources become very thin and scarce. I say that to prepare you because while you made it through what has been the biggest battle so far, the fight is far from over. Of course, much of that also depends on your child and their abilities to navigate a very complex and at times unfriendly world that often lacks capacity to understand autism and all it implies. But fear not, you know this road it’s just taking you in a new direction. You will need to familiarize yourself with other agencies and support coordinators in your county. If you’re fortunate, whoever you’ve been working with now should be able to help facilitate any transitions to what I call the next level. 

Let’s talk about that next level. My son turns 30 in a few months. Frankly, services for adults with autism are woefully inadequate, especially for someone like him. We moved from Wisconsin to Florida in 2019. Prior to the move I had researched the state agency for supports for him, prepared to contact the local Social Security office so his SSI would transfer and began looking into transferring his guardianship to a new state. To be honest, I was on the internet constantly, searching and contacting whoever I could find to assist me to the next level. Then reality hit when we arrived. Now, as official Florida residents, I could move the process forward— to a 10 year waiting list for waiver services. Right back where I started in Nebraska when Jonathan was 3. Talk about a crushing blow. So I did what we all do, I suited up and went into another battle. So did my son. His behaviors increased and his physical aggression intensified. Covid made it worse and on one very dark day that could have sent me to the hospital, I found a ray of light. Long story short, I was able to file an emergency appeal after documenting our downward spiral and pleading our case to have Jonathan placed on the waiver. The day the letter came granting him placement I was filled with relief, gratitude and renewed strength. We had won another battle.

So here I am still in the position of warrior mom. Despite my son living away from home I am still very much a part of his life and stay keenly aware of those battles that still need to be fought, recognizing his need for independence yet standing at the ready to defend him and his rights. Painfully aware that one day I will not be present to fight the good fight and trying my best to anticipate any and all future obstacles and opportunities. Hoping others realize that the battles are not with autism, but within our own abilities to accept others unconditionally, especially when they are often struggling to understand us. Ignoring the needs and resources of autism at any age are not viable solutions. Federal and state entities need to combine financial resources and plan for the future, not kick the can down the road hoping for the best. There are millions of parents, myself included that would be invaluable resources aiding the direction of needs and future funding. And yes, it will be a costly venture but as we parents know, it can be done. We’ve been reinventing that wheel for quite some time. 

But for now, as I look down the road I call autism and its path in the world as we know it, the question for me still remains:

As we fight for the future of autism, when will the battle end?

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