special needs parenting · Uncategorized

Choosing Battles 

Today is June 30. It’s a beautiful summer day and my boy put on a stocking cap to go to therapy. I wanted to stop him because you don’t wear a stocking cap in the summer, right? 

But I paused before saying anything. Ben already had to do half a dozen things he didn’t want to before breakfast, and it’s a 70something day today, not a 90something day. So I offered his baseball caps, but no, he wanted this hat, and I let it go. 

If I say no, I keep my no until the bitter end. I make sure my no means no, so I think twice before saying it. 

As it turns out, Ben took the hat off once we got to the office, and we avoided an unnecessary meltdown, which is my true bottom line for each day. 

But it also pays to remember that his little mind works differently and he doesn’t have the language skills to express why he chose that hat, for all I know it might have been quite important to him.  So a stocking cap in summer it is, and a good start to therapy too. 

special needs parenting · Uncategorized

Mommy Truth Mommy Truce

Scrolling through social media there are a hundred ways I can feel like I don’t measure up to mommy standards. Jenny had the best bento box lunches, and I feel guilty for just writing a check for school lunch. Sally has an organization system to die for, and I’m all too aware that I can’t organize my way out of a paper bag. In fact, unless you made the last episode of hoarders, I can guarantee that your organizational skills beat mine. Betty just accomplished a monumental to-do list, and Kelly made a meal that would make Paula Deen drool.  

So often I close my Facebook app feeling like I don’t measure up. Many days I feel like I’m just getting by, and that in the mommy wars I’m only winning at losing. 
Then I look through my own feed. I’ve written a bunch of blog posts lately, most of which I am pretty darn proud of. I make time for fitness and self care, and my garden is nothing to scoff at. It suddenly occurs to me that I’m measuring myself with someone else’s stick.  
So why do I do this? Why do I let I let someone else’s achievements steal my joy and satisfaction? Why do I fall prey, over and over, to the “grass is greener” mentality? It’s ludicrous for me to keep feeling like I’m not keeping up when we aren’t even racing.
I have seen calls for women to stop using social media to make ourselves appear better than we are, but don’t we do that anyway? Isn’t that why we have slimming bathing suits, push up bras and make up? It’s not like keeping up with the Jones started with social media, it’s just a modern venue for an age old problem.
No, I don’t think I need you to stop putting your best foot forward, I think I need to just take it all in stride, and know that each of us sometimes feels like we’re failing, and each of us is just doing our best. I need to admit that you are better at some things than I am, and give you credit for that, while not diminishing my own abilities and strengths. Each of us is fearfully and wonderfully made and each of us has days in which our joy makes our hearts fit to burst and days which bring us to our knees.  
Dear mommy, I call for truth, and I call for a truce. Go ahead and share what you’re good at, and I’ll send you a like, in sincere joy, and not let it diminish my own gifts. Let’s call a truce, for the sake of our own hearts. You’re doing good, dear mommy, and so am I.

special needs parenting · Uncategorized

The Summer of the Introvert 

Despite some bumps at the start (and bumps are our status quo), summer might just be going okay. Ben is in a good place with autism meltdowns on hiatus, and we’re getting a bit of routine going, and even some homework

So by all external measures, we’re succeeding at least moderately, so why do I feel like I’m suffocating?

It’s a condition I call “introvertitis”. 

After almost two weeks of sickness, 8 days of which was spent in introvert hell (aka the hospital), and the constant companionship of my offspring, my breathing is shallow, my fuse is short, and my amygdala is on high alert. 

I am an introvert.  As an introvert, time alone is essential, it is my air, my water. It’s not that my children bother me, or that I dislike them, it’s that in order to give of myself in the way they need, I need breaks. Long breaks, frequent breaks, whichever, I need them. The longer I go without quiet, undirected, alone time the tighter my chest gets. 

The only way to set things aright is alone time, very preferably in my home and uninterrupted, although runs do help. 

It helps to know what this is and what causes it, to have a name for it. Before I stumbled across introversion resources I had no language or understanding for this and wondered if I was disturbed or somehow a bad parent because of the tension that arises when I lack quiet. Now at least I know, and in a pinch I can settle for a half hour of garden time here and an hour or two to run when I can. 

But I am here to tell you that there’s nothing better than the arrival of the buses in September and the first full week of school during which I fill my introvert alone time cup to the brim, and self regulation becomes a part of my life again. 

So often I hear how quickly time passes and to enjoy these days while they’re here, and believe me, with Hannah entering her Senior year in high school I get that, but in my reality, sometimes these days are taxing, and adding guilt to the mix only makes the burden heavier.  I know I will miss them some, but that doesn’t change the suffocating feeling I have today.  So I will be gentle with myself, recognizing that the coin has two sides, both of which are very real, and work toward balance when I can. 

special needs parenting · Uncategorized

Learning Japanese…or not

After lunch Alex sat down at my brand new laptop and started going to town. I was intrigued, and decided to watch. 

He clicked on Chrome, and away he went, Googling Skylanders. He does this in order to discover any characters he doesn’t have for his Wii collection and write them down to make a shopping list. As such it’s pretty decent summer homework, and something I don’t have to push him to do, so I rolled with it. 

A few minutes later I noticed him leaning close to the screen and asked if there was a problem. He told me he couldn’t see, which puzzled me, so I walked over to expand the screen. After fiddling with it for a few minutes I noticed it was in what I could guess is Japanese. 

From there I fixed the problem, and he continued on, then I saw his list: 

So, I’m counting this as foreign language lessons for the summer and calling it a day. 


My Son Has Autism and we Vaccinate

When it comes to vaccinations, we are square in the “pro-vax” camp.  Even after getting an autism diagnosis for my son, we still believe in and advocate for vaccinations.  

Let me first move the whole Wakefield debacle out of the way by sharing this article by Brian Deer who has systematically debunked the autism myth that Andrew Wakefield perptuated.  As if that weren’t enough, Safeminds, an autism advocacy group, has since funded a study which further demonstrates the lack of connection between vaccines and autism.  The details of that study are in this Newsweek article, but this summary says an awful lot.

Halladay commends SafeMinds for financially supporting the study, but she worries that some autism advocates may be asking the wrong questions. “I’m not saying that we need to stop funding research in the environment, because we know the environment does impact neurodevelopment,” she says. Halladay likens the challenge of disputing the claim that vaccines cause autism to “playing whack-a-mole.”

“First, the proposed association was between the MMR vaccines and autism,” she says. “Then that was disproven. Then it was the thimerosal components in vaccines; now that has been further disproven in a carefully designed animal model study that aimed to specifically examine that question. It has also been suggested that the association is because of vaccine timing, but that too has been disproven. The target always seems to be moving, and the expectation is that scientific resources will be diverted to address each new modification of this hypothesized link.”

To be clear, I have no notion that his autism has anything to do with MMR or any other vaccinations.  While that leaves my neutral on this issue, another issue has swayed me into the pro-vax camp.  That issue is that I realize, very clearly, that without vaccinations my son would die. 

I am a fan of modern medicine and the science that makes it possible.  If Ben had been born a century sooner he wouldn’t have survived his Hirschsprung’s disease.  Had he been born less than a half century sooner, he wouldn’t have survived leukemia.  As it is, we have, several times, come face to face with his mortality.  I see vaccinations along the same lines as chemotherapy, far from perfect, but, with the help of the scientific method, getting better all the time, and our best shot at giving our kids a long, healthy life. 

For us, though, it goes a step further.  Ben is immunocompromised.  That means that even fully vaccinated, he doesn’t have enough ability to fight off disease.  He is that kid.  The kid who needs herd immunity.  He’s the reason our whole family gets flu shots and Chicken Pox vaccinations.  He’s the kid who needs boosters on the Prevnar and Pneumococcal vaccines because his body lost immunity to them.  He’s the kid that could suffer from a measles outbreak even though we do everything possible to protect him.  And he is the kid whose body is weak enough to succumb to those diseases.

I put this here after weeks of consideration.  I realize this could ruffle feathers.   So I just ask, if you don’t vaccinate, have you researched the diseases we vaccinate against as well as the side effects of vaccinations?   Have you seen who polio and diptheria can do?  Do you realize that if measles encephalitis sets it that your child will be isolated in the ICU while you wait to find out if she’s the lucky one who survives with brain damage or doesn’t survive?  And last, do you realize that, statistically speaking, the greatest risk in vaccinating is driving your child to the office?

I realize the rhetoric goes round and round, and that I’m about as likely to change your mind as you are mine.  But if there’s that tiny chance that you’re really listening, that Ben’s face and plight would make a difference, I have to try.

I have a feeling it will take a true epidemic to turn the tide, and I just hope that I don’t lose my child as a casualty. 

special needs parenting · Uncategorized

Failing Summer

This is what my kids look like after 15 minutes at the park. Fifteen minutes. 

We met Ben’s class for their last day of school picnic at the park, it sounded like a perfect outing to blow the stink off after a couple of weeks of illness, a brief outing on a comfortable summer day. Not too  much strain for Ben’s still recovering body. 

Only Ben ran out of steam and now he’s limping again on the month old foot injury and back in his boot after complaining that his heel hurts. 

And then there was the meltdown on the ride home for reasons I have yet to ascertain. 

I want so badly to make those idyllic memories that summer is famous for. I so long to go do fun things and not come home exhausted and flustered. I try so hard, and 9 times out of 10 we return home a hot mess. 

I see other families having summer fun, making memories and loving life and while I am sure there’s a “grass is always greener” element, I can’t shake the feeling that it should be better than this. 

I want my kids to enjoy outings, I try to think of everything, but we just crash and burn. 

The good news is we only have 9 weeks to go…

special needs parenting

Farm Life

My boys are in the double digits for age.  We still haven’t made concrete decisions about what their adulthood will entail, but the topic is very much on the table.  We have a few things that are important to us.  First, Hannah must be able to be their sister, not their decision maker or caregiver.  Second, our boys will not languish in a group home where their days roll by, one indistinguishable from the next.  And third, wherever they live, we want them to have the opportunity to continue to grow and develop throughout life, as I believe all people should.

Recently, I connected with Graceland Farms.  Graceland Farms is currently a dream.  It is a dream that was born when a little girl met a mule named Ruthie who lives at Dixie Dude Ranch and instantly connected.  The little girl is Abby, and her mother is the driving force behind Graceland Farms.  Upon seeing this human/animal connection, Jennifer knew that her dream for her daughter was a farm where she could live, work and have meaningful friendships.  The other vision of this farm is to promote continuing education of both parents and Special Ed Professionals, by paying for trips to the National Down Syndrome Congress Conference each year for people who otherwise wouldn’t be able to attend the conference.


From that moment on, Abby’s mom, Jennifer, has been brainstorming about how to start a farm where Abby and friends like her can live full, meaningful, productive lives.  Where they could care for animals, garden for food, and do so in community.

Maybe I am selfish, but I want this farm to be up and running by the time my boys are adults.  I want this vision, this farm, to come to fruition so that there is one more beautiful option for their adult lives.  One of the ugly secrets in disabled communities is that there are few options for adults to have work and homes, and when a new option comes up, it is filled up before the doors even open.  There is demand for excellent options for adult housing options, but the supply is missing.  I have chosen to become a part of Graceland Farms, and give momentum to the driving force to make this dream a reality because I believe that my boys deserve better options, and Graceland Farms is one of the best options I have heard of yet.

Please consider this.  Is this something you can get behind?  If so, how?  There’s a Go Fund Me page where you can donate, but if you have other abilities (an experienced grant writer would be a huge blessing!) or strengths to offer, or just want to lend a hand of any type, add Graceland farms as a Facebook friend, or leave a comment here.  Help us get the ball rolling so that the reality exceeds the dream!