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An Open Letter to You From a Mama of Kids With Special Needs

An Open Letter to You
From a Mama of Kids With Special Needs

 

Dear You,

Dear You, my friend,

Dear You, my neighbor,

Dear You who have kids without special needs… kids with just, you know, the usual slew of bottomless needs,

Dear You who are kids,

Dear You who were once kids,

Dear You,

I want to tell you about my son.

Just for a minute.

And about me and what it’s like for us who live full-time here in this world of kids who are different than normal, whatever normal is. 

I want to tell you about my son.

My son who is beautiful.

My son who is sensitive. 

My son who is compassionate, funny, and kind.

My son who loves Doritos the way some people love the sunrise or the rain on the roof or the majesty of the ocean, with a sense of awe and wonder and bliss.

My son who’s a total butt nugget and says GEEZ, MOM and WHATEVER and FINE and who also says I love you, Mom, and means it as fervently as he does the Geezes.

IanMy son who experiences developmental delay, pronounced anxiety, and expressive and receptive language disorders — meaning he can neither speak nor understand speech as easily as others — and who lives, therefore, every minute of every day trapped inside his own brain, unable to communicate well; at once imprisoned and also more free than we’ll ever be because he hasn’t learned to hide himself the way we so often do. 

Sometimes you ask me how my son is doing. You who know us well, and you who know us just a little. You ask because you care and because you’re curious, and I want you to know both are OK. I appreciate your kindness, and I understand your curiosity. It’s OK to want to know. It’s good to ask.

Sometimes I give you an answer. Sometimes I can’t find the words. When I do respond, it’s usually short. 

How’s school going? you say. How’s Ian and how are you? And I don’t know what to tell you, because, even though you’ll listen to my whole answer — even though I believe you actually, really want to know — I don’t know how to access the complexity of my grief and my longing and my hope in order to find a whole answer to give.

My son is a child who will, on some level, always finish last when measured by the standards of success the worlds gives us. He will always be an outsider. Always be different. Never belong. And so we work to create the safe haven. The place of belonging. The soft place to land. The true meaning of family. Which, it turns out, is hard, because families are made out of humans and we’re fallible. Imperfect. Messed up. And we’re the ones he’s stuck with, poor kid.

It’s hard for my son to be different. He knows. He can tell. And it’s hard for me, too, because I grieve that which cannot be. The same life and opportunities the other kids have. The limitless potential to DO. I must wrestle with myself most days to remember my son has the limitless potential to BE. To be loved. To be valued. To bring joy. To be my son. To be enough as he already is.

Grief and hope make for awkward companions. Awkward lovers, never quite sure where to put their hands. Always bumping teeth. And yet, because the grief abides, I work to make room for hope, for without hope we are lost at sea, adrift and alone.

While I’ve learned to live inside this new reality — while I’ve learned to look for hope and to cheer victories of every size and to regroup when we’re forced to fall back — I have neither “gotten over” nor “come to terms with” my son’s disabilities like I expected I would by now. Instead, I’ve learned there are new phases of grief. New sorrows. New things he can’t now and will never do. New realities that are mine with every new age of his.

So you ask how he is. How I am. And I want to answer you. I do. I want to champion my son. I want to spread awareness. I want to hand you my heart. But I don’t know how.

I stick with facts for my longer answers. School’s going well, I say. Or, He got to play a sport this year! First time he’s played a season. I might even tell you, The counselor is AWESOME — she is, it’s true — or say, The medication is really making a difference, and I mean that, too. Even though medication isn’t right for everyone, I wish we’d given him that relief earlier.

But I more often give you a chipper Fine! or a cheerful Good! or, when I’m overwhelmed and can’t muster my optimism, an Ugh! or a Pfftt! or Well, it’s hard right now, but we’ll figure it out.

And there’s a whole world of things I don’t say.

About what it feels like when it’s dark outside and I wonder about his future.

About how hard it is to tell him again, day after day, sometimes hour by hour, that I don’t understand what he just said and I need him to say it again.

I don’t tell you he didn’t sleep through a single night for the first 11 years we had him.

I don’t tell you about the panic attacks that leave him flailing and breathless.

I don’t tell you what it’s like to hear the sounds of my son crying in his sleep and to revisit what his first 3 years must have been like, abandoned and alone. 

I don’t tell you about the guilt I carry for not being with him, even though there’s nothing I could have done to change his early life.

I don’t tell you about the family vacations, for which we try to be grateful, which are raw and agonizing because he is outside his routine and his safety net and therefore bewildered and afraid.

I don’t tell you about the ways my body tenses when he bursts into our room in the middle of the night and the door bounces off the wall while he yells, “DAD? MOM?” because he needs to make sure we’re still there.

I don’t tell you how fragile he is. Or how fragile I am. Or how much I’m afraid we’ll all break.

Instead, I give you an answer, a Fine! or a Good!, and it’s a true one, but it’s also incomplete because my brain is short-circuiting. Stuttering. Blanking. There’s just too much to say, and I don’t know where to jump in.

guatemala 014When Ian was three (and four and five and six and probably seven), he used to throw himself on the ground and play dead whenever he felt overwhelmed by the world around him. I took this picture of him at age three, in the airport in Guatemala City, just after we adopted him, when we were bringing him home for the first time. 

Frankly, I think it’s a pretty good strategy. Very effective. 

It’s also an excellent visual aid for the route my brain travels when you ask us how we are. How are we? We’re… good… we’re… fine… fizzle, fizzle, kerthunk… PLAY DEAD. 

And so I take this long route to tell you this: I’m a mama of kids with special needs. I’m hopeful and I grieve. And I need you, my friends, rather desperately, even when I don’t know what to say.

I need you to keep me on the side of hope.

I need you to whisper in the dark that it’s going to be OK.

I need you to keep asking how we are, even though my answers are pathetic.

And I need you to know I remember every kind thing you say to me about my kid. Every compliment. Every ounce of compassion. Every time you try to include him in your games and in your parties. Every time you inconvenience yourself to bring us in. 

For every kindness to my child, to my family and to me, I’m nearly unbearably grateful. And I’ll ask you to please, keep being gentle with us. 

Yours Truly,
A Mama of Kids With Special Needs

 

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51 responses to “An Open Letter to You From a Mama of Kids With Special Needs”

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    • Thank you, and God bless you so much for writing this letter about your son and about you. You touched my heart in a big way, for I have a 23-yr-old son who is developmentally disabled. He has a set of chromosomes with 1 1/2 and another pair with 2 1/2. He is on the autistic spectrum, has gating, and lots of other issues.
      He can be sweet, loving and tender and all of a sudden turn into a violent, threatening monster who breaks his favorite things, like his TV or tablet and is threatening to kill us, himself, the dog or someone else.
      I get what you go through everyday! Each day is a gift or a new set of challenges. I love my son with all of my heart, but sometimes I feel like he is killing me little by little.
      My other three children grew up, went to college, got married, and now have families of their own. This will never happen for Jordan. He will either stay with me, or go to a group home. I found a wonderful ranch for DD adults, but, you have to have lots of money, they don’t take Disability. They also have a long waiting list.
      I am physically disabled and live on SSI. Our car is falling apart, we need a new 4X4 SUV. We need other things too, but, I know that God created each of us for a purpose, and He has a plan for each of our lives, even your son’s and mine.
      In the interim, the best we can do is give each day to Him, lean on Him for our joy and strength, give our boys to Him every minute of every day, along with ourselves and our families.
      We can rejoice in the accomplishments our boys make, and pray for His perfect wisdom and guidance. Someday our boys will have perfect minds and bodies.
      We can support each other in prayer, tell each other our joy and our pain, and love each other. We can also treasure those who love us and our sons they way we are, give of themselves to us, and love us with the unconditional love of Jesus himself!
      I love you and your son, and will keep you in my heart and prayers. Please keep me in yours, Jan

      Reply

  7. Beth, it will be better than OK.

    Ian is poised for success. Success that will evade most of his peers. Success in what truly matters, to God.

    Recently I have been led to marvel at the huge implications of some simple words that Jesus said. These were words that got blurted out when he was tired and surrounded, and being attacked by the religious authorities. They were trying to trap him, to make him take sides among the endless theological wars the many factions of religious scholars delighted in escalating.

    “Which is the most important commandment?” they asked him. Pick one, and justify your answer.

    Jesus replied by saying the most important commandment of all is to love God with all your heart, soul, mind, and strength.

    Not to know God. not to understand God, not to be able to explain God, to love God.

    Can Ian love God?

    The second most important commandment is almost as important as the first, Jesus continued to say, and it is to love your neighbor as yourself.

    Can Ian love others?

    One of the biggest challenges to people today, and certainly to young people when they are no longer young, is success. Whether fame or attraction, or money or power or artistic ability–we have driven our kids to believe they can be the best at everything, if they only try hard enough.

    We are setting them up for disaster.

    We are saying to our kids–the most important thing is for you to find a way to be famous, or to excel at your art, or to rise in the corporate world, or to be adored by everyone in the world. And if you are not headed there, the only reasonable answer is that you are not trying hard enough.

    So all these abilities and strengths and talents that all of these kids have stuffed into them are all being turned towards fame or fortune or success in some other way.

    And at some point they, like us, will face God, and just as we expect God to ask about all of our accomplishments, God will gaze into our eyes and say softly “do you love me?”

    Then, turning to all of his children whom he loves so dearly, God will ask “and do you love my children as much as you love yourself?”

    What will the chairman of IBM say? What will the rap star stutter? How will the famous politician evade?

    Beth, Ian has a straight road to that moment, a road unencumbered by so many of the things that will distract so many to destruction. He still has work to do, and an amazing mom and dad and communities to help guide him, but he has it relatively easy in the race about what matters.

    For it will be easier for Ian to face God with his innocent and damaged heart, to gaze out through his vicious early memories, to pass through the remains of all the things he could not do in his life, to look God in the eyes and answer “yes.” I love you. And mean it.

    And exactly because he will not have an easy time fitting in, it will in many ways be easier for Ian than for most kids to learn to love one another. Ian will have the capacity for compassion that comes from pain.

    So grieve for his pain, the struggles he faces and will continue to face, the life spent not being like the other kids. Grieve for all of that. But do not despair. For the last shall be first, and the first shall be last. Because humanity’s greatest challenge is to pay attention to what really matters, to not get distracted by all these other human creations.

    Teach Ian to love God. Teach Ian to love others. He will finish first in line when it matters most.

    Reply

  9. Wow, just loved this post. I’ve struggled with finding the “right” answer to well-meant questions about my son with autism for 20 years. You put so much of what I feel so perfectly into loving, heartfelt words. One of my first posts (http://www.goodmarching.com/?p=221) on my new-ish blog was about this very thing — after a long search to find an adult placement for my son, I didn’t know how to respond to my friends’ kind questions on how it was going. I felt almost obligated to give a “good report” when they were thoughtful enough to ask at all, even though I knew the honeymoon would eventually end and my heart was still so heavy with grief and doubt. Thank you for reminding me I’m not alone in these feelings. Your honesty is very meaningful.

    Reply

  10. I have often thought with my kid with special needs…”Lord, why did you think I could do this?” I have never, ever been able to do it alone… Not when she was 3 and not that she is now 20…and she’s come farther than anyone ever thought and it should now be easier but it often isn’t…and I don’t get ‘it’ or understand ‘it’…but I am most blessed by those that do not ‘judge’ her by the usual standards but love her by the standards of grace…and I am blessed.

    Reply

  11. Beth, It’s gonna be OK. He’s gonna be OK. You’re gonna be OK because he has his mama & you have your boy, forever & always. What’s really cool is that even though he didn’t come from your womb, he actually looks like you somehow!

    Reply

  16. Thank you for writing this! You are not alone with these feelings. I know that doesn’t help, because neither of us would ever wish the life we have on our worst enemy, but maybe knowing another family understands (and lives) the same pain, the same hope, the same fear, and the same awesomeness, takes away some of the loneliness that we special needs families often feel.

    Reply

  18. Yes!!! And of course, you are not alone. Thank-you for writing this. Grief and hope are indeed strange bedfellows and the ground is always shifting under our feet in Disability World.

    I so appreciate this post.

    Heather

    Reply

  19. I know this can’t possibly compare, but I can’t help thinking that we all have our own issues to deal with. Your sister in law with her kid and his allergies, me with my kid and his allergies, you with your kid and his disorders. They don’t compare, but we all have our stuff that weighs us down and sometimes we wish life could just be easy for one day for our kids.

    Reply

  20. http://www.awesomearts.com/festival

    I am glad you used the word AWESOME – the Awesome festival is held each year in Perth Australia. This year it included two talented artists who use their art to communicate Laser Beak Man and Tristan’s Monsters.

    The festival also includes a guide for ASD (autistic spectrum disorder).

    Reply

  21. Sitting in the dark waving wildly and sending hugs your way. I’m currently trying to explain why I can’t take my son to drop off his allergy meds they want to have on hand at school when he returns next week. He cannot go, see the school and then not stay. He will meltdown. Loudly and with his entire body and it’s not worth the cost to his and my sanity, the cost to his and my body to pick him up and wrestle him into a safe position and carry his 38 lb body wildly kicking, flailing and screaming back to the car. That there are good days when we can go places and bad days where it is next to impossible to go anywhere without it being too much for him to handle. The stares from people who think that it’s a discipline problem make me want to throw coconuts at their heads. I hear you, keep holding onto the bright beaming lights of the good times and small victories and remember to try and take care of yourself, even if its just for five or ten minutes of quiet being in your own head bliss.

    Reply
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