advocacy · parenting · special needs parenting

7 Big Truths About Special Needs Parents

Every week or so my messenger app dings with a message from someone reaching out. Often it’s a question; someone looking for input or encouragement, asking advice or giving any of the above. Sometimes it’s a local friend, often strangers find me via Google or an article and seek me out.

No matter who it is or what the reasoning, I welcome it.

I’ve noticed a few things as well. Though I’m reluctant to generalize, there are some threads common to many of these families.

  1. We’re dedicated. Whether it’s helping a child with ADHD or dyslexia succeed in a general classroom, finding a niche for a child with Asperger’s (yes, I know it’s technically not called that anymore) who is gifted, making plans for a child with a complex medical diagnosis or finding the right fit for someone with a developmental disability; families are bound and determined to do right by their kids.
  2. The resources aren’t readily available. This many years after IDEA and ABLE, it’s still hard to find and create resources for people who need any services or aids outside the norm.
  3. We’re tired. We struggle to find child care or respite, we spend untold hours driving to and attending appointments and meetings, we often are years or even decades behind on sleep, and we’re often trying to brainstorm, troubleshoot and solve behaviors.
  4. We’re broke. Between copays, deductibles, and gas, our money flies out of the bank account with extraordinary speed, and it’s not from being irresponsible. In fact we often feel guilty for small indulgences that many people take for granted because we know that the $2 we dropped on coffee is $2 less we can pay on bills.
  5. Despite all that we’re usually grateful. We realize that the services we can access for our kids are unprecidented, and though we struggle to make it all work, we do so gladly!
  6. We’re an unparalleled network. We find each other, we support each other, we advocate together and encourage each other. It’s a worldwide commune where people gladly share anything they have, eager to help one another out.
  7. We have a vision. It starts with our desire to make the world a better place for our children, and a recognition that our children make the world a better place. And we’ll go to the end of the world to bring it to fruition.

What would you add?

grief · parenting

Grubby Gratitude

With Thanksgiving Day situated toward the end of the year it’s natural to reflect back and take stock on the cumulative blessings of the year.

I believe in gratitude, I believe that focusing on all that we have to appreciate is a worthy practice no matter what, and especially valuable in times of heartache. So, this November I’ve been on a quest to find my gratitude and to meditate on the good in the world and my life.

What I have found is much like what I imagine finding gold to be like. I’m busy looking for something sparkly and clean, clearly beautiful and valuable. What I find is specks in an ordinary rock, stuck in the mud. It’s valuable, but so much more complicated than I expected.

I don’t remember the last time our family had a “normal” year. A year in which we didn’t go to bed on New Year’s Eve ready to bid good riddance to the heartaches of previous twelve months. And I don’t remember a Thanksgiving on which we didn’t have a lengthy list of things that make our hearts swell with gratitude. The problem is that too often the hardships cover the blessings, disguising them and making them look less valuable.

Looks are deceiving.

Nothing nothing will undo the pain of living through tragedy. This year our blessings, which are many, are shrouded in heartache. But they are there. They’re beautiful and worthy and wonderful. It takes work to reach into the mess and pluck them out of the yuck and clean them up. I find myself reluctant to start because the dirt looks like how I feel.

This year my gratitude is grubby, but it is there. It’s going to be a work in progress, but I don’t want to be so overwhelmed by the mess that I don’t even try.

My giving of thanks will be subdued, I might not be able to muster effusive delight over the many things in life that I have to be grateful for. Rather, I will be intentionally noting the beauty around me, seeking it out and tucking it away in the depths of my heart, where it will fortify and warm me in the days to come.

parenting · special needs parenting

The Loneliness, Do you See it?

A couple of my friends shared this post this morning. Take a minute and read the texts that special needs parents would like to get.

There’s a theme there, do you see it? They’ve been left behind. They feel invisible. They’re lonely and overwhelmed.

It’s pretty much accepted in special needs circles, our families get left behind by most of our friends. We’re the ones watching the world go by and wondering if everyone has forgotten we’re here. The people we hung out with before special needs entered our world went on about their normal lives and we couldn’t keep up.

I suspect we ghosted them or RSVP’d “no” a few too many times. Do they know it was unavoidable? That we wanted to go but couldn’t find child care? That it’s hard to get out these days? It sounds selfish, but we need our friends to bear with us a little bit. Consider what it’s like if your child has gotten mono and you have had to slow down and tuck in for a season to care for them, maybe that’s a good comparison, except it isn’t just a season for us, it’s ongoing. It’s hard to see everyone get together without us. I wish I had the energy to try harder, and I wish you cared enough to slow down and include us. Or just show up once in awhile.

It’s tempting to just write it off, suggesting that it’s your loss, or that we must have never really been friends anyway. But I did think we were friends, I really did. I think that if your child had special needs and mine didn’t that I would have stood by you. I thought you cared about our family, and when we went through our hardest times, the test was too much for the friendship to bear. It’s a loss for me, a big one, though you don’t seem to feel the same. It hurts.

I usually focus on the ones who stayed. The friends who showed up instead of stepped out. The ones whose steadfastness has exceeded what we ever could have asked for. Those friends who do show up with coffee and a smile, the ones who have carved out time for us when we couldn’t keep up, who make room in your lives no matter what. We know it’s hard to fit us in, and we know it takes effort to include us, but you always do. You always do.

parenting · special needs parenting

Why Is a Homecoming Date a Headline?

This is Alex.

He’s a pretty cool kid if I do say so myself. He is clever, empathetic, funny and just plain sweet.

Alex is 15 years old and a freshman in high school. He has loads of friends, even though we just moved to a new district. People like him, which makes sense, he is a likeable person.

Some time in the next 4 years, I think he would totally dig going to a formal high school dance. He enjoys socializing and dancing, I think he would have a blast. Whether he goes stag or has a date, he would be in for a great night.

But when I think of Homecoming (or Prom), there’s a bit of trepidation. Alex has tons of friends, both in in his special education classes and in the school in general. What if a young lady asks him to the dance? And what if it happens to be a young lady without a disability? And what if the local news caught wind of it and decided that they need a feel good piece to round out their broadcast?

I don’t want my son to be a feel good news piece.

And I don’t want him to be asked to a dance by someone with secret hopes being a the local hero for the day.

I get it, it’s moving. Perhaps it seems like a Cinderella story. But there’s a term for stories that use people with disabilities to play the heartstrings of others; it’s called inspiration porn.

Just like the standard type of porn, you know it when you see it.

And just like the standard type of porn, the subject is objectified in order for other people to get off.

If Alex does end up going to Homecoming, why can’t it be just like every other student in the high school?

Is it because we assume that anyone who would ask him must be some sort of saint? Really? Only a saint would want to get dressed up and spend an evening out with him?

Ouch.

But what other reason would there be for news coverage of two high school students attending a formal dance together?

So please, think about it. Put your child or yourself in those shoes. How would you feel if your high school student got on the news for getting a date for Homecoming? Isn’t that something most students take for granted? Isn’t that a normal rite of passage?

I plead with you, use your critical thinking skills. The next time you see that feel good headline, picture your child as the person whose date to the dance is such a novelty that it’s considered newsworthy. Then pause and reflect on whether that’s something we should embrace as a society.

I don’t think it is.

grief · parenting

A Grief Observed

It’s been almost 2 months.

Living through child loss for 2 months feels simultaneously like no time at all and like an eternity.

I keep chasing the same thoughts around like a dust devil until it disappears. Then awhile later it blows back up and spins in circles until it gives up again. I never catch it. It never stops returning.

I go back in time reviewing all of the interactions. Could I change one and have a different outcome? After chasing them all down I only return even more unsure.

If I could just hug you, and shake you, then hug you again. I’d probably yell for good measure, then another hug.

But that’s not an option anymore.

I think I’m stuck in the anger stage of grief. Anger at you, anger at me, and especially at all the shit that happened to you; at the broken road you were put on, over which none of us had control.

My head knows there’s nothing I could have done, but my heart won’t let it go.

Maybe I should be looking forward to a heavenly reunion, but there’s too much bitter in that bittersweet thought.

I hope that the peace which always eluded you is now yours. That’s my only comfort.

I hope that the trauma that burdened you like a mountainous backpack has been cast off and into an endless abyss where it’s weight will never crush you again.

Is it too late to remind you that I love you, that you are worthy and deserving of love? Perhaps you know that now in a way that was impossible to grasp when you were here.

I miss you. I always will.

advocacy · parenting · special needs parenting

Why Do I Post So Many Pictures of My Kids?

Many bloggers take great care to avoid showing their children's faces, to keep a modicum of privacy for their families. They make up blog names for their kids and keep the family's identity anonymous. I get that, the Internet is far from safe, people steal photos of children and use them for rotten purposes. It seems that it's foolish to churn out photo after photo of my precious brood.

But I do.

It's because I want you to see them, to really see my kids.

I want you to get used to their features; those almond shaped eyes and small mid face that are the hallmarks of Down syndrome.

I want you to see their humanity, their preciousness, and to recognize them as the multifaceted, complex people that they are.

Alex was stared at yesterday. Blatantly, unavoidably stared at for several minutes yesterday. I'm sure it's because he wears his diagnosis on his sweet face. Anyone who might not be familiar or comfortable with Down syndrome will see his differences and not be able to stop examining him in order to perhaps put a finger on just what is different about him.

I want a world where every single person can look at someone with a disability and see the human being, not the difference.

By my sharing of photographs and our daily ups and downs, I hope to give insight that will facilitate that. I want people to understand that my children are as adorable and adored as any other child, and also to realize that there are differences and challenges; both for them and for us as parents and caregivers.

This is all my bodacious effort to make the world a place where they are accepted.

How can I do that if you never see their faces?

I know that some will disagree, and I'm okay with that. In fact I'll gladly listen to any dissenting voice. I've never claimed to have all the answers. I'm just doing everything in my power to make the world a safe, accepting, and welcoming place for my children.

Something many parents get to take for granted.

parenting · special needs parenting

6 Ways to Keep Your Sanity When Your Kid is a Handful

Alex is a bit of a handful, Ben is both hands overflowing. There are still many days when I'm about to tumble right off the deep end, but I do have a few sanity savers that keep me just this side of the brink.

  1. Locks and gates. I keep areas of my house cordoned off and keep the kids in the house. This means I can shower, drink my coffee and just function as a human being. It doesn't make things easy, but it keeps my kids safe. We literally lock the kids in the house. Elopement is real and it's terrifying. I found Alex about a mile away one morning when I got up. Keeping the kids in the house means they're reasonably safe.
  2. I have a mom clan. Not that I ever get to see them because their lives are just as zany as ours, but I can hop on social media and find the women who get it and know that no matter how ridiculous my life looks, they will never second guess or judge.
  3. I exercise. Without my runs I would completely lose my mind. I don't know if it's the runner's high or just the mental organization that comes from movement and nature, but man alive I need my runs.
  4. I've learned to let it go. Whether it's the frustration or upset over my own mistakes or the latest meltdown from the kids, I pretend I am putting a leaf into a stream and watch it float away. Sometimes I have to release it a few times before it goes away completely, but thankfully my stream can handle as many leaves as I need to place in it (and occasional logs too).
  5. I cultivate meaningful activities at home. I get great satisfaction out of cooking and baking and gardening, all of which I can do in those precious minutes when my kids are entertaining themselves. (With help from the door locks so I can turn my back for a few minutes). Being creative and having meaningful activities when I feel stuck at home reminds me of my own identity and value aside from just being the mom.
  6. Live in the moment. Rehashing the crap and worrying about what might be coming will rob you of your joy. It's easier said than done, but so worthwhile! The leaf in a stream works for worries too. You don't have to get mired in what ifs and should haves!

This is my list, but it isn't the only list. Everyone is different so these may or may not work for you.

I would love to say "take a break" or "take time for self care", but I know there are far too many days that those are impossible. In fact if it wasn't for having a husband who is just as committed to exercise as me I'm sure that would fall by the wayside as well.