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.

 

adoption · Down syndrome · special needs parenting

The Next Step in Pro-Life

This weekend marks the 45th anniversary of the landmark Roe v. Wade decision which legalized abortion nationally. I am not even going to attempt to discuss the law, rather, I’d like to examine the next step.

What happens after birth?

What happens when children are born with disabilities, and in an instant a parent becomes a caregiver?

What happens when a parent gets addicted to opioids or dies of an overdose?

What happens when parents hurt their children because of human frailty, or neglect, or substance abuse?

What happens when children have enormous medical challenges?

What about services and support for people living with mental illness?

And so much more.

Wouldn’t robust support of families caring for children with exceptional needs be pro-life? Would women be less likely to terminate a pregnancy with a child who has a prenatal diagnosis of disability if they knew that access to everything their child would need to thrive would be available and affordable?

Wouldn’t it be pro-life to fund research and resolution for opioid addition? And while we’re at it, there are record numbers of children in foster care at present, in large part related to opioid addition, being a foster parent is, in my humble opinion, the most stunningly beautiful example of pro-life imaginable.

Do you get what I’m saying here?

There are dozens of ways to embody a full-circle, lifelong pro-life stance without even bringing abortion into the conversation.

But it’s hard.

It’s easy to talk about changing a single law, and to carefully hand select politicians who have a certain box checked on their platform. But if that’s your stance, can you answer what should happen after the children are born?

Adoption.

But wait, is it right to separate a child from their ancestry for life? Biology is enormously important, and while infant adoption is sometimes necessary, far too often it’s a lifelong solution to a short term problem when better solutions for both the child and parents are available.

I don’t claim to have answers, in fact, it’s the questions that overwhelm me.

But as a person who has spent my adult life focused on the children who are already born, the ones with disabilities, the ones whose parents are addicted, the ones who have been orphaned, the ones with mental illness, the ones with so little support. I have come to believe that if everyone who made sure that they voted for the pro-life candidate took a step or two to care for the children once they’re born that it would transform everything. We have the ability and the obligation to fill in those vast gaps for the children who are already born.

advocacy · parenting · special needs parenting

Autism Awareness:  Autism Related Anxiety and Obsessive Compulsiveness 

There’s this thing that happens. When Benjamin knows he’s going somewhere his anxiety skyrockets and he perseverates until he leaves. 

So, yesterday when he went to Grammy’s house, we told him when it was time to put his shoes on.  Even though he loves going to Grammy’s house, from the time he finds out he’s going until the car is under way, he cannot avoid an anxiety attack.  As soon as we leave his world is back in order and he’s just ducky. 

This goes for any outing. 

The anxiety used to cause vomiting, but thankfully now it’s only gagging and retching. 

I suspect there are a few factors playing into this. The perseverative behavior of autism, the inability to tell time, which is truly a complete incapacity to understand the flow of time at all, and the intolerance for having any need go unmet.  It makes for tricky parenting. 

In response we go into ninja mode. 

Ninja mode means that we sneak around and go to great extremes to avoid raising Ben’s suspicion that we might be leaving. For example, for a visit to our new house I did all the packing while he was doing his flush and seated on the potty for an hour. 

It’s a high stakes game, because if we slip and he figures out that we’re going somewhere we get stuck in the anxiety cycle of him asking repeatedly “Go bye bye?”  Or if he understands the destination, “Go Grammy’s?” Or “Go doctor?”   It happens a few times a minute from the moment he realizes we’re supposed to go somewhere until he is out of the driveway, and is punctuated by his retching and gagging. 

When such a drastic error occurs it’s often best to just leave the house and drive around until it’s time to arrive at our destination. Distraction rarely works. Picture schedules don’t help, and once the anxiety is triggered there is no going back until we leave. 

Anxiety disorders are common in people with autism, as are the obsessive compulsive or perseverative behaviors exhibited here.  This is just one of Ben’s flavors of autism/anxiety/obsessive compulsiveness, one that significantly impacts his quality of life and ours.  Ben has an unspecified anxiety disorder that has some qualities of separation anxiety plus his own little spin of anticipatory anxiety. While he has some significant obsessive compulsive behaviors, he has never been diagnosed with the disorder. 

Autism is a spectrum disorder and presents differently in each individual, this is just a brief illustration of how autism impacts Ben. This is why supports and therapies are crucial, because it’s the best way to build his tolerance for normal daily activities so that he can live a full and complete life with autism rather than being isolated by it.