autism · Down syndrome · special needs parenting

How Summer Changes When You Have Kids With High Needs

Summer break isn’t my favorite.

I used to love it. We had a camper and several times each summer our family would visit different parks around the state, enjoying nature and time together. It was idyllic, and this, or something similar is what summer means to many families.

If I had to choose just one word for what has changed, that word would be vigilance.

Our son, Ben, has high needs. Yes, he has Down syndrome, but so does Alex, there’s a difference. Add in autism, with some hefty medical and psychiatric diagnoses, and time with him requires constant vigilance. Like bringing super busy and fearless two-year-old twins to the Grand Canyon overlook without a rail kind of vigilance. And that is just outside at our home, when we go anywhere else our efforts are multiplied.

This is why:

  1. Our child doesn’t have discernment. He occupies a twelve-year-old body, but his mind is much like that of a toddler. Dangers like busy roads, campfires and water mean nothing to him, and we have no way to explain it to him.
  2. He doesn’t learn from experience. Family members have been flummoxed to see him run into the water until it’s over his head, then stand there until someone rescues him. After coming out coughing and hacking, he will turn around and do it again. And again. And again. He will even laugh while doing it because he gets attention for it. He has yet to grow out of it, and I have my doubts that he will. Any time spent near anything dangerous is similar.
  3. He doesn’t respond to punishment of any sort. Neither in school nor at home. We have yet to find a way to create a consequence for his actions which discourages him from doing the same in the future, and that is with social workers and psychologists using their best tools. (No, this isn’t an invitation for you to share your idea with us).
  4. He melts down. Too much stimulation, too many “no’s” or transitions, or just any change of setting are triggers for meltdowns. Anyone with a toddler knows what it looks like, flopping on the floor, screaming, kicking, hitting, biting and more, with murderous rage. But this is a twelve-year-old. He weighs about 100 pounds now, and he isn’t getting any smaller.
  5. He has discovered that taking his clothes off gets a reaction, and he loves reactions. Any time spent in public is taking the risk of public nudity.
  6. It’s a break from the structure and routine that keeps him together. School is a setting with professionals who work with him on these and many other things. He craves the predictability, and reproducing it at home doesn’t and won’t work, and goes against the fluidity that makes summer fun for the other kids.

We aren’t alone either. You may not see them, chances are they are holed up at home being selective about going out, but there are many families like ours, struggling just to visit the lake for an hour, or stop at the ice cream store for a cone on a hot evening. We know we need to get our kids into the community, but we do it judiciously, because so often it ends in frustrated exhaustion and tears. We live this year-round, but during the school year, our children have the structure and stability of professionals during the day, and we meet them refreshed and ready in the evening. Those with school during the summer have less of it, and the free time feels chaotic to them, and their families both.

Why do I bother with telling you this?

Because not very many people will. We left church, one with a special needs ministry because our son’s behavior and medical needs were too much for the volunteers. We no longer attend the special needs family camp we tried, because his needs were too much for the volunteers. We are the outsiders, the resources there are don’t fit for us, and we struggle alone. And I think it needs to be said.

 

autism · Down syndrome

What is Autism and Why Does It Matter to You?

Today is World Autism Day. There are specific activities involved, such as wearing blue, but beyond that, why should you, the average internet surfer, give two hoots about autism awareness and acceptance? Why would it matter to you?

The diagnostic criteria for Autism Spectrum Disorder (ASD) specify that to be diagnosed a person has to have social deficits. Added to this are the criteria regarding sensory processing and rigidity of behavior.

In plain English, what this means that approximately 1 in 68 people have significant social deficits and sensory processing difficulties to be considered Autistic. The disorder occurs on a spectrum from mild to moderate to severe.

Because it’s a spectrum of presentations, you might see one person with Autism who is highly intelligent with more social challenges and rigid behavior and another who doesn’t speak at all, has limited to no social skills and constant sensory avoiding or stimulating activities (or a combination of avoiding and stimulating), and both of them are considered Autistic.

No two people with Autism are alike. When you know a person who is on the Autism Spectrum, you might think you have a pretty good idea of what Autism is, but really, you only understand that person. The next person you meet with Autism might have very some different personality traits, behaviors and social skills.

My son, Ben lines up his cars all the time, lining items up is a common Autistic behavior.

This is where awareness and acceptance come into play:

  • If someone says they have Autism, believe them. Just because they aren’t like someone else you know with Autism doesn’t mean that they don’t actually have it. To get an Autism diagnosis, a person goes through clearly defined standardized testing conducted by a qualified clinician, and chances are that you are not qualified to decide if the assessment was correct.
  • Be aware, when you’re in public that you might encounter an Autistic person. If someone you meet seems to have unusual social conduct, give them the benefit of the doubt and accept them as is.
  • Autism meltdowns are very real and very challenging. Don’t judge the person melting down or the people with them, just give them space and a smile.
  • Keep advice to yourself. Sure, your cousin’s neighbor has Autism and a gluten free diet helped them and your coworker calms his Autistic son with essential oils, but those are two different people, and what works for them isn’t a magic fix for all things Autism related. Most people with Autism and their families have accrued great resources and have tried many things, so chances are good that your suggestion isn’t new to them.
  • They might be using medications, natural remedies, or therapies to manage their Autism, and whatever they’re doing is between them and the professionals they trust to give them direction, it’s not for you to judge their approach.
  • Just like anyone, Autistic people (and their families) want to be accepted. If you want to be helpful, read up on Autism and be a safe and accepting person. It’s really the best way to help. The Autism Society is a great place to start if you want more information.
  • As a parent of a child with Autism, I have been both chastised and blessed by strangers in public, but mostly just ignored. Honestly, being ignored is probably the easiest for us, so don’t feel like you have to help someone who is struggling in public in order to be an accepting ally.

What is really helpful, is knowing that my son is accepted, just as he is. And anyone can do that.

adoption · autism · cancer · Down syndrome · special needs parenting

Welcome to Holland? Or Welcome To The Amazon…

 

There’s a popular poem about the experience of parenting a child with a disability called “Welcome to Holland“.  It was an apt description of how I felt when we found out and processed the fact that Alex has Down syndrome.  However, I find it lacking for the more significant disability Ben has, so here is my own analogy:

When you walk through the woods near your home, you’re exploring. It’s fun, interesting, and exciting. While doing such things I have come across snakes (the Eastern Hognose variety), raccoons, unknown dogs (one who attacked my dog and me) and occasionally people I don’t know. Doing that exposes me to more variety and slightly elevates my danger from that of staying at home.  It’s a good, wholesome, fun, enjoyable, and completely normal thing to do.

That’s what having a typical child has been like for me.

When I visited Arizona I went for a run on a public property near the home of my in laws. There were cacti all over the place, and I made mental notes that snakes that I might encounter would be of a venomous type, and that even such things as ants, which in Michigan are fairly benign, could cause me real grief.  It was a bit more nerve wracking, a bit more exciting, and overall a great experience.  I recognized that I was outside of my comfort zone, but it was within a reasonable proximity of normal, and it was more of a mindset change than anything else.

That has been my experience parenting a child with Down syndrome. We took normal and kicked it up a notch.

The territory we unknowingly entered with Ben is more akin to an equatorial jungle. The vegetation is so dense that making headway is arduous, slow, daunting and barely manageable. The variety of the flora and fauna is stunning.  And terrifying.  It’s crucial to remain focused and attentive every second, even sleep is a luxury during which a certain vigilance must be maintained.  Specialized equipment is necessary to survive. Dangers lurk on every branch, flying, crawling, swimming.  A brief break from watchfulness could land you in a life or death situation.  It’s incredible it’s not for the faint of heart; only small populations live there, and tourists are few and far between.

This is life parenting a child with complex medical, developmental and mental health needs. It’s life on the edge.

We’re a highly specialized bunch, it’s adapt or die here, and adapt we do.  We develop skills and equipment to manage our extreme environment, always looking for the next breakthrough. We’re capable and savvy, though a bit more fierce than most civilized populations.

In the welcome to Holland poem, the comparison is Italy to Holland, but if you were planning a trip to Italy, imagine how woefully unprepared you would be in the jungle.  Even for us, planning another trip to Arizona, would be completely lacking in equipment and skills for the actual journey we’re on.

That’s where this analogy differs from the Holland analogy.  This isn’t a trip that we’re fairly well prepared for, this is being dropped into a place where we don’t have the knowledge, skillset or equipment to survive, we have to ad lib the whole thing; our only skillset is improvisation and the will to survive.

The most implausible part of it all is that we actually succeed at it; by sheer determination, fueled by passion and love.

autism · Down syndrome · Uncategorized

Our Own Drummer 

You know time crawls on when you’re waiting for your song to start so dance alone to the beat of your heart.

~Fall Out Boy, Phoenix

Autism spectrum disorders are known to occur in individuals with Down, and statistics show that ASD is more common in Down syndrome than the general population. It’s hard to nail down, but a reasonable estimate, per the NDSS, of the incidence is 5-7% of the Down syndrome population having co-occurring ASD.  I would estimate that number to be on the low side.

Of those people with co-occurring disorders there’s a pretty clear description of the common presentation, which includes, but isn’t limited to; frequent stimming, little interest in social interaction, and often the individual is nonverbal.

Suffice it to say, after reading about Down syndrome and ASD, I didn’t have any indication that Ben had autism in addition to Down syndrome. In fact, you could have knocked me out with a feather when we got his diagnosis.  I got the book, “When Down Syndrome and Autism Intersect“, which further confused the matter by describing the standard presentation of DS/ASD, which was nothing like Ben.

Ben with his cars

 

It took me quite awhile to wrap my mind around the ASD diagnosis. In fact, it was at last year’s local Down Syndrome Association picnic that the reality hit home like a sledge hammer. Ben was disregulated and riding the meltdown train the whole time, and the difference between him and the rest of the people with Down syndrome at the gathering could not have been more obvious.

Ben is very social, in fact excessively so. What he lacks is reciprocity.  He’s far more characteristic of what used to be considered a PDD-NOS diagnosis.

Alas, Ben is an island. He doesn’t fit in the general Down syndrome community, nor does he fit in the DS/ASD community.

I certainly don’t know what it’s like parenting other children with co-occurring Down syndrome and ASD, but I do know that it’s awfully lonely parenting our little man. The resources are not designed for us, they don’t address our challenges.  Ben is who he is, and I love him in all of his quirky individuality, but man would I love to find a kiddo with a similar presentation. I could just imagine sitting down to coffee with his or her parents and comparing stories, watching their eyes light up as we all realize what we have in common.  We bypass the standard Down syndrome, ASD, and DS-ASD resources, because none of them address our situation.

For now we do alright on our own. Ben has his own drummer, and he sure is cute marching to the beat on his own.