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?

Uncategorized

Living Gratitude

Bear with me, this is something I’m hashing out in real time, so I don’t have it all polished and pretty. In fact, this writing is primarily intended for myself in order to work through my thoughts.

At Thanksgiving we pause to profess gratitude, often for things we take for granted on an ordinary basis. It’s a beautiful practice, especially before a giving (and receiving) season, to appreciate what we have. But…

Is there more?

Should there be more?

What if we take this day of thankfulness and soup it up, put wheels on it, and take it out for a drive?

For example: “I’m thankful for my healthy body.” What is the logical way to enact that thankfulness? A conscientious diet? Giving up a vice? Committing to exercise?

Or “I am thankful for my spouse.” But are you acting like it? Would your spouse say they feel appreciated? Do you thank them for their contribution to your home and family? Do you show them how much you value them?

What about your house? Your children?

Looking at myself, I suspect that my gratitude can often be superficial, just lip service, something to check off my list of things to do before digging into a glorious feast and then turning around and griping about the dishes.

I know that mindfulness and intentionality are buzz words that we hear too often, we slap the word authentic on something to make it look like we mean it, but do we? Are we fleshing out our gratitude and walking a thankful life every day? Are we even pausing to do that with sincerity for this one day a year?

It seems that I have more questions than answers, I’m afraid. But I can’t help but notice that even though I have more than I could ever need, I still crave more and more. And I’m not alone. I want to at least slow down this runaway train instead of just shrugging my shoulders because I’m not the engineer.

I guess what I’m saying is that I want to live out my blessings. I want my spouse to know what he means to me, and my kids to feel valued. I want to recognize the great fortune of having a home that stays warm in the winter and cool in the summer and a luxurious bed to sleep in. I want to live and breathe and eat and sleep gratefulness for each advantage I enjoy each day.

And then, (and I think this is the real key to happiness) I want to share it.

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.

adoption · Uncategorized

5 Things I Think You Should Know About Adoption

Oh man, it’s Adoption Awareness Month. I had no plans of writing about adoption, but then I realized that there are things that I do wish more people understood about it, so I invite you to sit down with me, maybe grab a cup of tea, and consider this:

  1. I have a legal certificate that says that I gave birth to my adopted child. Now mind you, he was born in a different state, I had no knowledge of any of it until over a week later, yet our government sees fit to create false documentation that lists my husband and I as parents…saying that I gave birth in a hospital I have never set foot in, in another state with a doctor I have never seen. I was alarmed when I first saw this, and still am today.
  2. An adopted person’s original birth certificate, the one that lists the mother who did give birth and the biological father, is permanently sealed in 44/50 states in the United States. That means that an adopted person will never be able to access the truth about their birth in those states.
  3. I am often called a saint for adopting a child with special needs. Please understand that I simply wanted another child. In fact I coveted another child. Because of the makeup of our family, we decided that adopting a child with Down syndrome would be a good fit, but the bottom line is that I was desperate to have one more child, and adoption was the method we decided upon. The reasons were convoluted, but fulfilling the desire of my heart was in no way saintly. In fact I was pushy, determined and tunnel visioned in my desire to adopt a child. Coveting will do that to a person.
  4. Speaking of that, I don’t for a second believe that God chose me to be Ben’s mom. For that to be true, God would have planned for another woman to conceive, carry and deliver a baby and for them to be torn apart for life in order for me to be that baby’s mom. I have no desire to believe in a God who would authorize a lifelong separation between parents and their child in order to hand pick a certain mom for a child. If this confuses you, this is a brief article that explains a theory that people remember losing their biological mother in a very real way for life after adoption. Why on earth would God do that? It probably sounds like a quaint notion until you dig in and think about it, which is exactly what I’m suggesting you do.
  5. Don’t assume you know anything about an adoptee’s biological parents. Stereotypes do everyone a disservice, including you.

This post is simply to get you thinking. Twelve years ago I had many preconceived notions about adoption, many of them have been challenged and examined over and over in that time. If something in this post makes you uncomfortable, please know that is has made me uncomfortable too, and that’s why I think it needs said.

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.