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. 

advocacy

Beautiful people with Down syndrome 

Today is 3-21. This day has been designated “World Down Syndrome Day”, because people with Down syndrome have 3 copies, instead of the typical 2 copies, of the 21st chromosome. 

How would one recognize this day?  For me, it’s all about showing people who aren’t acquainted with anyone with Down syndrome just how beautiful, wonderful and treasured they are with photos and comments. 


Elias is a favorite phototograpghy subject of his sister Alicia. He is always quick to smile and his smile could light a room!


Daniel recently became an uncle. He is sweet and gentle with his new niece, and so proud of his new role!


This was taken at the GR Public Museum. This is a portrait of Jenna, who from Day One has been on a first name basis with Joy.


Emery is a sweet, sassy, stubborn and most lovable 7 year old. My life has changed more in the last 7 years then I could ever imagine, and I wouldn’t trade it for ANYTHING. ❤



Ben lives life at turbo speed. He is fully present in every moment!


Alex loves holidays and dressing up. He wants to be a Conservation Officer like his dad, and he is the most sincere person I know. 

What a day to celebrate people with “a little something extra”!  Please join me in celebrating these beautiful lives. 

advocacy · parenting · politics · special needs parenting

What About Those Who Can’t Help Themselves?

God helps those who help themselves.

Originally coined by Algernon Sydney, made famous by Benjamin Franklin.

It’s sound advice.  If I get the ball rolling, God will give it momentum.  If I make good choices, God will bless them.  I’d buy stock in that promise.

But what about Ben?  What about the others that can’t help themselves.

AHA!  Of course.  Ben has good parents.  Parents who help themselves and help him.  Parents who know what they’re doing, can figure things out, and get things done.  Done deal.

But wait.  It’s not so simple.  It takes a team far bigger than that.  It takes 10 specialists, teachers, paraprofessionals, therapists, and much more to help Ben, and eventually, he is almost certain to require round the clock care at a full time, residential facility.

But it’s okay, I’m on it.

Yep.  I’m a round the clock caregiver to a child with complex developmental, medical and behavioral needs, and I organize and facilitate the team that contributes to his well-being.  No worries, though, because God helps those who help themselves and the full time caregivers of those who can’t.

Sweet.  Glad we got that settled.

But then there’s the cost of managing this.  The daily expense of the numerous appointments, phone calls, miles and miles of driving, and of course, the wear and tear on a 130 lb body who daily carries a non-compliant 82 pound child, even with several bulging discs.  There’s that dread that keeps getting pushed to the back burner of what happens if the primary caregiver needs care.  Not to mention the physical therapy and doctor appointments for the caregiver, and the dismal foreboding of the possibility of surgery.  Pshaw.  Not to worry, God helps those who help themselves, so there’s nothing to see here.

Or, perhaps.  Instead of buying into a comforting colloquialism, we could, just perhaps, find out what it is that families who are invested in caring for complex children need to survive and thrive.  Perhaps, wraparound supports provided by insurance or Medicaid for children with severe and complex conditions would be a wise investment for the present and the future.  Perhaps, intact and thriving families are good for the economy and can raise children who are capable of becoming contributing members of society.  And maybe, just maybe, we don’t need to even call it an entitlement.

Perhaps.  But isn’t it easier when God just helps those who help themselves?

 

advocacy · marriage

What Should I Think When a Recurring Dream Turns Lucid?

A lucid dream is a dream during which the dreamer is aware of dreaming. During lucid dreaming, the dreamer may be able to exert some degree of control over the dream characters, narrative, and environment.  Wikipedia

I have had occasional lucid dreams since early adulthood. During that phase I had watched all of the “Nightmare on Elm Street” movies with my friend Dawn, and Freddie Krueger started invading my dreams.


The dream recurred for many moons, at least a year, before I started recognizing it, and then started changing it. I took care of that burnt creeper, and he finally left my dreams for good.

Since then I have been able to do that with several recurring dreams and an occasional random dream. Once I realize I’m dreaming, I either awaken or change the dream.

Last night I had another recurring dream. It was my light switch dream (does anyone else have these dreams ?). I’m oftentimes in my childhood home, sometimes in unfamiliar places, but regardless, I’m alone and the lights won’t turn on when I flip the switch.

I looked up this dream and found this meaning:

If the light switch in your dream wasn’t working, you are having a hard time figuring out the solution to a personal issue.  edreaminterpretation.com

I’m thinking that one is pretty accurate in context of our current situation (see previous post for clarification).

But this time I was at home, with Mike. (I don’t need a dream interpreter to know that my beloved husband represents strength, comfort and protection) and it was the switch by my kitchen table, which controls both kitchen lights, the garage light, and the lights over the driveway.


I started flipping the switches and this time I knew it was the dream. I got uncharacteristicly angry (I tend to be low key) and went off.  I was yelling words I normally don’t use, tried another switch, and woke up.

I don’t know what you think, but I think this chick has had it. I didn’t get the lights on, but I did stop the nonsense.  I’m not only changing my dream, I’m changing my reality, the reasons I have it.

Speaking of lucid dreams, do you have them?  What do you think yours mean?

advocacy · parenting · politics · special needs parenting

Does “Pro-Life” Mean the Same Thing to You as it Does to Me? 

When we got the call that our nieces needed help, without question we headed over. We had no idea that we would wind up parenting one of them to adulthood, but even if we had, we would have gone. 

When we chose to adopt a second child with Down syndrome, we were told he was perfectly healthy. Had he not been declared healthy, our affirmative answer would have remained. 

He wasn’t healthy, but we didn’t find that out until after his adoption was finalized. It was too late to get a medical subsidy, even though his medical condition (Hirschsprung’s disease) is congenital (he was born with it), but the doctors in the neonatal unit didn’t test him, and the adoption agency which had guardianship over him didn’t advocate, so he went undiagnosed until well after his adoption was finalized. By all means he qualifies for this help, but after burning up many days and innumerable phone calls, including to legislators, with Ben’s state of birth telling me it’s Michigan’s problem and Michigan telling me it’s a problem with his state of birth; I let it go.  After all it’s only money.  

Now we’re going on 3 years of attempting to secure the Children’s Waiver for Benjamin. This program would cover respite, community living assistance, incontinence supplies and more, but because of the way it’s scored as 3 separate domains, Ben isn’t considered severe enough for the program. (The scoring favors childrens with one, extremely severe issue, such as a child who is ventilator dependent or the most severely developmentally disabled children).  I was actually told that if Ben had injured himself or one of us, such as a broken bone, we would probably move to the top of the list. We are diligent to ensure that this doesn’t happen, and it’s detrimental to his score. Seriously. 

Alas, I have been contacting anyone who will listen, from our local departments all the way up to the Governor’s office and everyone in between as well as our representatives in D.C.  All of whom listen, show concern and empathy, and wring their hands. 

It appears that we have no recourse. 

Our son’s needs have enormous depth and breadth, and our ability to provide them while remaining healthy ourselves is limited, and we are always living at that limit. Often at the expense of our other children. In my exploration of this subject I have found numerous other families in similar situations who are also at a loss. 

The crux of this post is this:  I’m calling BS on pro-life politicians.

Call yourselves what you are:  pro-birth.  Once a child is born they’re hung out to dry.  In the state of Michigan, there are no supports available to any but the most severely disabled children, in fact, less than 500 in the whole state. 

Some families, like ours, keep plugging and do everything in our power to give our children everything they need at any cost to ourselves. 

Some families choose to live in poverty because the supports are more valuable than their income. 

In many states, children with disabilities automatically get SSI and Medicaid. That means that regardless of income, even if it’s into the 7 or 8 figure range, children are eligible for these safety net programs. Michigan is not one of those states.  

In summary, as a strongly pro-life family who has fostered family members and adopted a child with special needs, our own pro-life party has hung us out to dry.   

To me, pro-life means taking the necessary steps to care for children at risk and creating a safety net for families caring for them, not a platform that promotes overturning Roe v. Wade. If you want people to choose to bring children with disabilities into the world, then ensure that their families will thrive by enacting a robust supports program that will empower them to flourish instead of feeling stymied at every turn and using precious resources to fight for every single millimeter we get. 



advocacy · parenting · special needs parenting

Rare Disease Day Letter, February 28, 2017


In 2006 & 2007 I spent endless hours Googling, as only a terrified mom can. 

My son had an enormous, bloated belly and emacieated arms and legs. I knew to the core of my being that he was terribly sick.   But our pediatrician, whom we had seen for years and came highly recommended by my physician family member and whose praises I heard sung by local pediatric specialists, kept nonchalantly calling him “just constipated”.  

If there was a way to convey my message, I did it, I even weighed and photographed his bowel movement, which only came every 10 days or do. She just increased his dose of Miralax. 

As a child with Down syndrome Ben was at risk for several types of congenital gastrointestinal diseases, but the one test that his pediatrician ordered came back inconclusive. 

I don’t know why it took me so long to go around her, I certainly wouldn’t take that long today, but I finally asked to just see the GI doctor. By that time my 15 month old was wasting away at barely 15 pounds, he was listless and had long since stopped reaching milestones. 

The GI office was scheduling months out, but had a cancellation with a nurse practitioner, I snatched it up like a drowning woman would grasp at a lifeline. 

I was terrified that she, too, would fail to see the dire condition of my son, but she hustled on our behalf. She gave him a Failure to Thrive diagnosis and marked his chart as urgent. She ordered a slew of tests, and conferred with the practice chief to make sure she didn’t miss a thing. 

Within a few weeks Ben was diagnosed with Hirschsprung’s disease, and had lifesaving surgery performed.

Within the same year he got a second rare diagnosis, Cyclical Vomiting Syndrome

In the 9 years that have transpired since, he has had 2 more surgeries and 2 out of state referrals for care with super-specialized doctors who manage care for a small subset of children with similar diagnoses. We have made gains on his care, but his quality of life is impacted daily by these diseases, including an hour long bowel flush through a stoma in his belly button which is done daily because Ben is completely unable to control his bowels. 

I can’t help but wonder if his life would be better if his a Hirschsprung’s was diagnosed within 48 hours of birth, which is the standard of care, but his doctors saw a constipated child with Down syndrome, rather than a child with a Rare Disease. 

I ask only that you join me in awareness, and if you are so inclined, click this link and share it to generate a donation. http://rarediseaseday.us/thank-you-for-raising-your-hand/

There are many rare diseases, so many that up to 10% of the population has one. Since the people with the individual diseases are few and far between, we have banded together to advocate for ourselves and each other. We are stronger together!