The Supportive Groups I Turn to as a Special Needs Mom

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Before having my first child, I never knew the depth of love I would have for my son. It was quite unexpected. It’s was like having a part of me living outside my body. What happens to him, happens to me.

When you add to the fact that he is a special needs child, I turned into a momma bear protecting her baby cub. We wouldn’t even go to the park for fear of what might happen. After all, we had a ventilator and emergency equipment to contend with to justify my fear of the unknown.

Special needs moms share the same concerns all moms have, but the concerns are significantly heightened when you have a medically fragile child. I wasn’t given a handbook on how to deal with these emotions. I knew that a medical textbook stated my child had a “not compatible with life” diagnosis. With that knowledge, our child came home at 6 months old.

I knew of no one else on my journey. There was no one I could ask. No hanging out with the moms in the park comparing notes and asking for advice. Instead, I had a team of nurses and a doctor for almost every body part. But how to handle my emotions? That I would learn on my own.

One day, my son had a significant life threatening event and had to be taken to the hospital where they stabilized him. After a few short hours, we were able to take him home. We had a happy ending that day, but my emotions I felt didn’t let me forget.

And so, when I see a sniffle or hear a cough, my emotions go into hyper overdrive. I hold my breath and think of the worst case scenario. What if he’s getting a cold? What if we need to put him on the ventilator? What if we have to go to the doctor? How can we avoid him from catching something there?

Before allowing my emotions to get completely out of control, I try to remember to breathe then implement a quick prayer, even if only a few words long. And finally, watch my son’s symptoms to see if they progress. Many times, what I’m worried about doesn’t happen. The sniffle is a spring allergy or the runny nose is short lived.

Will these intense emotions lessen over the course of time? Probably not. We are mothers, after all. Can I learn to rest in prayer and past experience to help me overcome? Yes. And now with the age of Facebook, I’m no longer alone on this emotional journey. There are many groups where I can share my experiences or ask a question and receive amazing advice.

Here a few of the groups I frequent:

Relating to dwarfism:

Achondroplasia!!

Distrofia Tanatoforica Grupo de Apoyo

Dwarfism Awareness 

Dwarfism 

Dwarf News 

Little People From Around the World 

LPA Central Star Chapter – Kansas City 

Parents of Little People of America 

POLP on Facebook  

Thanatophoric Dysplasia Pregnancy & Survivors Group 

Related to special needs:

Families of Children with Tracheotomy’s 

Florida Mommies of Miracles Chapter 

Kids With Vents 

Mommies of Miracles Discussion Group 

Special Needs Prayer Network 

Tracheostomy 

So, in the end, we are not alone in our journeys. What groups do you frequent? Where do you find inspiration? How do you handle your hyper emotions of being a special needs mom? I’d love to hear your ideas. Who knows, maybe they’ll appear in a future blog.

A version of this post originally appeared on A Miracle in My Living Room.

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Who Should Take the Blame for Autism?

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I saw another article that claimed to solve the mystery of autism last week. This time, it was gestational diabetes.

It’s always something, isn’t it? Either autism is because of advanced paternal or maternal age, or the dot-com era or people who eat gluten. It’s the manufacturers who made Roundup.

(I’m not even sure what Roundup is. I’ll be right back.)

(Oh. It’s weed killer you use for gardening and stuff. No wonder I didn’t know what it was.)

I know it’s all in the name of research and ultimately it’s super-important stuff, but the subtext of these headlines feel, well, a little vengeful. They feel like accusations.

I’m not trying to argue we shouldn’t investigate the heck out of autism spectrum disorder. We most certainly should. We should research what’s causing it and fund the programs for it and do what it takes for people on the spectrum to lead full, productive, happy, meaningful lives.

But this undercurrent of blame hurts — a lot. It hurts to think a choice I did or didn’t make contributed to my son’s condition. It makes me feel hopeless.

Even though I know — I know — there’s nothing I could’ve done differently, I still pause when I read things like this. I hover over them for the tiniest second before I click on to something else.

And still I refer to the mini-checklist in my mind: nope, I didn’t have gestational diabetes. My husband, Joe, was not even 30 when Jack was born. Neither one of us are particularly savvy when it comes to technology, and I’ve never grown so much as a tomato on my own, so I never used Roundup.

On Mother’s Day in 2004, I gave birth to a 9-pound, 3-ounce baby boy. This boy was wired differently from the very beginning, and because of that we suspect genetics played a heavy role. That is our autism story, and I’m sticking to it.

But we all have our own stories to tell — our own pathway down the bumpy spectrum road. And each one is authentic and true and raw and sometimes, hilarious. Each one is simultaneously heartbreaking and heartwarming.

So how can science pin down a single cause, when autism hardly has a single story?

Blame.

You know how with a kaleidoscope you can look inside and see a thousand colors and patterns all at once? And then if you turn the dial a little bit, the colors and shapes move, and everything looks completely different?

I think autism is like a kaleidoscope. It’s ever-changing and always shifting. It looks different to everyone.

And I think blame is a lot like a kaleidoscope, too. We can consider it from one angle, and feel pain and embarrassment and shame, or we can turn the dial just a smidge and know hope.

Because of his grandmother, Jack eats pears.

Because of his father, he understands prayer.

Because of his teachers, he wears his glasses all day long and only takes them off to sleep at night.

Blame them.

Because of my daughter, Rose, Joe and I knew for sure that the sneaky anxiety snake was indeed whispering in his ear once again.

After eating breakfast together one morning, Rose waited until her brother went upstairs for his sneakers before she touched my arm and said softly, “Mom, something isn’t right with Jack.”

It was a few weeks after Easter, and she was still wearing the pink rabbit earrings that the Easter Bunny left in her basket. It was her very first pair of dangly earrings.

How can a 7-year-old girl wearing her first pair of dangly earrings so aptly describe her big brother’s anxiety?

“He just isn’t himself.”

Because his 12-year-old brother, Joey, Jack runs track on Wednesdays.

See, Jack hates sports. He really hates anything right now that doesn’t have to do with YouTube videos and Oreos and baking cakes. So we signed him up for Special Olympics track team. And he threw the biggest fit you’ve ever seen until Joey agreed to do it with him.

And during the first practice, Joey took off down the track, his neon yellow sneaker flashing. He looked back over his shoulder at his brother, and then slowed just enough for Jack to catch up. Jack jumped on his back, laughing.

If Jack believes he is fast — that he can run like the wind and feel the cool breeze of a New Hampshire spring in his face — well, that’s all Joey’s fault.

Blame him.

Because of our dog, Wolfie, he knows how it feels to cry into the furry neck of a patient, waiting puppy.

Because of my 6-year-old, Henry, he knows how to shout to be heard.

This weekend we had Jack’s birthday party. The extent to which my son obsessed over this event is difficult to put into words. Over and over and over and over, he wrote out long, messy lists and schedules and recipes and ingredients and more lists, until, frustrated beyond reason, I huddled in my bedroom and hid from him.

Then, about five days before, before he decided he needed to make blue cupcakes. Nothing but blue would do. We searched everywhere — Hannaford’s, Stop & Shop, Target — for blue cake mix. Then we tried Amazon. We found it.

Jack hovered over my shoulder while I sat at my computer and tried to add it to the cart. But it was considered an add-on — an item that’s so small you have to order a bunch of other things in order to buy it.

Jack started to jump and scream. I started to sweat.

Just as Jack and I were both about to lose our minds — albeit for very different reasons — my 9-year old, Charlie, walked into the office.

“Wait! Mom, why don’t you check the box that man Duff sent us? Maybe he gave us some blue mix.”

Sure enough, we dug around and found one. I nearly wept in gratitude. Thank you, Duff Goldman. Thank you, Charlie. I blame both of you for the lumpy blue cupcakes that stained Jack’s teeth when he smiled.

Then there’s Cody. Sweet, adorable, green-eyed Cody, the boy in Jack’s class who told another boy to leave Jack alone and stop calling him names. I blame Cody for being brave and honest and kind. I blame him for being one of Jack’s very first friends.

Then there’s Jack himself: the owner, the landlord, the keeper of the spectrum key. He never asked for this diagnosis. He never asked for a cure or for headlines or blame.

And he’s so much more than science.

He’s a boy who can’t understand what an add-on means when you shop on Amazon.

He’s a fifth-grader who longs to belong.

He’s a brother and a son, a track-runner and a blue cupcake-baker.

Like a kaleidoscope, he is colorful and beautiful and perplexing. Sometimes, he makes my eyes hurt. Sometimes, he makes my head hurt and other times, my heart.

As the world of science continues to tackle the hard job of figuring out where autism comes from, I’m going to continue turning the kaleidoscope in my hands so I can learn the patterns and colors and mystery right in front of my very eyes.

I’m going to celebrate the people – and puppies – responsible for Jack’s progress, his joy, his confidence and safety.

“Hey. That’s my friend. Don’t talk to him that way.”

Jack and his friend, Cody

A version of this post originally appeared on Carrie Cariello’s blog.

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The Side of Diabetes Most Diabetics Don’t Talk About

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“So you just need to stay away from a lot of sugar and you’ll be fine?” “You just have to watch how much candy you eat, but that’s it, right?”

For nearly two decades, I’ve been asked questions like those at least once a week. Sometimes it’s by people who are just getting to know me, and other times it’s by complete strangers. I’ve been a type I diabetic for 16 years. Diagnosed during my sophomore year of college, I’ve learned how to live with this disease.

But it’s not the sugar intake I think about all the time. It’s not the pricking of my fingers six times a day or the guilt I feel about downing that second cookie when everyone around me has already eaten four. It’s the impact diabetes is beginning to have on my body.

The changes came slowly and without formality. For the first decade, I didn’t really notice anything. But in these last five years, some changes have reared their ugly heads. Who knew how little people wanted to talk or hear about them?

I blame it on fear.

Diabetes can affect nearly every part of the human body. It can damage nerves, clog arteries, slow digestion, damage kidneys, cause blindness, force amputations and many other deplorable conditions.

I switched from four to six daily insulin shots to an insulin pump seven years ago. It was a good thing. No, a great thing. I no longer had to take 50 shots a week, and it left me with much less to carry around.

But as a result, I’ve placed somewhere around 900 insulin pump insets in the fatty tissue around the mid-waist section of the stomach. It’s left me with bruising and scar nodules the size of silver dollars that won’t go away.

My feet are changing, too. I have severe swelling and fluid retention. And my toes often feel numb. My doctor says it’s likely nerve damage. There’s no cure. I can only resort to pain relief. And, oh the pain. It’s insane. My vision has decreased, but there’s no sign of blindness yet.

But I don’t sit around talking about this side of diabetes. Most diabetics don’t.

I’m thankful for a husband who “gets it.” He’s seen the worst of it and will surely see more.

Instead, I walk with the pain and inject with the scars. I silently pray for a cure, but realize it might not come so soon.

I don’t need folks to feel sorry for me. I’m just asking for more awareness. Awareness of the heart. Because each person with a chronic disease is experiencing something you might not realize. So have some heart.

I’m also asking for awareness about diabetes itself. Diabetes isn’t simple and easy. They’re so much more to it than denying yourself that piece of cake. Diabetes can hurt. It can wound. It can change everything.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why I Wish for the Day My Son Will Be ‘Too Cool’ to Kiss Me Goodbye

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“I’ll love you forever.
I’ll like you for always.
As long as I’m living,
my baby you’ll be.”

I often quote Robert Munsch’s children’s book, “Love You Forever,” to both my boys when they’re snuggled in and almost asleep.

I think all parents often look at their children and just wish they would stop growing — for them to always be their babies. I loved those preschool years where I was their superhero, where I did no wrong, where there was no other mom better than me on the entire planet, where they knew I could fix any problem they ran into.

Sure, there are stages where we might wish for them to rush through, like those terrible threes or when that first hint of tween attitude shows its face. And yes, it’s so exciting to see them become their own person and participate in new activities and start to plan for their futures. But nothing beats the snuggles and unfiltered love they give when they are little and not so affected by the societal norms around them.

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With my oldest, those snuggles are getting less and less frequent. Sure, in the comfort of home, with just having the four of us around, he continues to snuggle. He continues to express his love. And I think most of the time he still thinks I can fix most of his problems. But we’re seeing it sneak in — like when he asks me to just wait in the car when I pick him up from his school dance. Or the other day when he absentmindedly slipped his hand into mine in the grocery store parking lot and then quickly pulled it away when he realized we were in public.

That’s not happening with Brian. I’m not sure it will ever happen with Brian. He still happily holds my hand everywhere we go. He still asks me to pick him up, 75 pounds and growing, when he’s sad or overwhelmed. He still gives me a hug and a kiss at school drop-off. He runs into my arms at the end of the day (OK, sometimes he just barrels his path to the car so he can get home and have his hour of iPad time). He always snuggles any time he catches me sitting down. And sometimes he’ll try to jump on to my back, even when I’m walking around. He looks for me when anything is wrong, and he asks for me when he’s sad or tired. In his eyes, there is no better mom anywhere in the world, even when I tell him iPad time is over.

When he’s lying in my lap, all curled up like a cat, and it looks almost comical because he’s almost the same size as me, I brush his hair with my hand. I trace the lines of his cheek. I think about how perfect he is. And I whisper to him,

“I’ll love you for always.
I’ll like you forever.
As long as I’m living,
my baby you’ll be.”

There’s a different truth to this when I say it to him compared to his big brother. Though both boys will always be my babies (even if my oldest hates to be called a baby), there are physical, mental and emotional pieces of Brian that guarantee he will always truly be my baby.

With his 11th birthday looming, I go through my cycle of emotions. It’s a cycle that never ends, despite the years and years of diagnoses, despite the progress and then the regressions and then the progress again.

I love him just the way he is. I am honored that I get to be his mother every single day. I love the snuggles and I love being his champion.

How is it possible that I cherish the fact that he’ll never push my physical affection away and that he’ll probably drown me in his love continually for the rest of his life but, at the same time, wish he would push me away? Wish that he would be embarrassed by me.

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That’s the cornerstone of special needs parenting: being able to accept, love, cherish every single bit of your child while at the same time pushing and wishing for change, growth and progress.

It’s funny to wish for a day where your child would be “too cool” to give you a kiss goodbye. But I do. I wish for it, even while cherishing the affection and realizing how lucky I am that he loves me.

This post originally appeared on The A-Word.

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To My Friend Who Doesn’t Know Why I Can’t Hold His Baby

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Dear Dan,

I love you. I love you as a sweet, strange soul that makes the world a kinder place. I love you as one of the few friends who called when Lily was sick and one of only a few who dared to hold her after her surgeries.

I love you as my husband’s best friend, who sees him as I do — perfectly imperfect. I love you as the man who married a great person I have grown to love, too. I love you as my own friend.

That is why what I have to tell you tears me apart — I can’t hold your baby.

I may not even look at him.

Some nights I cry about it. When I hold babies I have nightmares for days of Lily dying. When I see babies, my blood pressure rises and my mind tells me the baby is going to have a seizure and die. No matter what I tell my body, no matter how much hypnotherapy and counseling I do, my body remember watching helplessly as my baby slipped away for 10 unbearable months.

My poor second baby, Lola, had a mother that cried a lot, slept terribly and had to fight every second to stay present and close to her. Paul has similar discomfort, though not to the same extremes. We haven’t talked about it with most people because it seems like we should just move on after 6 years.

But, our bodies remember and won’t let us forget.

It wasn’t until almost all of the baby was gone out of Lola that it started to get easier to be her mother. I think some call it post traumatic stress disorder (PTSD). We are not sure when we will get relief from it or if it will ever get easier.

So, I am so grateful others are moving into our place as you await the arrival of your sweet baby and we will continue to hope and pray something changes for us. But, please know we love you and would give anything to be right in there with you. We can’t and we are sad about it.

With love,

Lisa

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I’ll Never Feel Guilty About Giving My Son With Autism This Treatment

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When my son was born, there were two very different nurses who worked at the hospital. The day nurse was harsh and not at all maternal. The night nurse was super sweet and much more merciful.

I was a brand new mom who had no idea what I was doing. I was panicked they’d even leave me alone with my child. Didn’t they know I wasn’t prepared for this? What if I needed help? What if something went wrong?

What if I wasn’t able to pull off this momma thing?

When the first nurse came in for the third time that day and saw my son was again in my arms, she scolded me. She said that if I didn’t put him down, I’d spoil him.

Her comment terrified me. Was I already spoiling him? Was I already failing as a mother? 

When the shifts changed, I confided my fears to the night nurse, not sure who else to turn to.

She came over, sat down on the bed next to me, stroked my son’s precious little head and said, “You can never, ever spoil them with love. There’s no such thing as too much love.”

These words changed my life.

When my son was 2 years old, screaming every single time I dressed him in socks or put him in the car seat, I was sure I was failing as a parent. I read every toddler training book on the planet. I asked other mommas, hoping they might have an answer. They didn’t. And worse, they also didn’t understand: “Oh, our little Clay sleeps all night long in his own bed.” I’ve never had that problem with Avery.”

Of course I got tons of advice, but most of it implied I was somehow spoiling him. That I was the one encouraging him to continue the difficult behaviors.

I felt terrible. Ashamed. Worthless as a mom.

And then, every once in a while, I remembered the nurse’s words:

“You can never, ever spoil them with love. There’s no such thing as too much love.”

Her words never failed to comfort me, reminding me I wasn’t totally ruining my child. They made me realize part of loving him was helping him through whatever was going on, no matter what other people said.

My son was diagnosed with autism in the midst of the worst meltdowns of his life. Every single day, sometimes three or four times a day, waves of total frustration and pain washed over my son. Rooms were demolished, walls full of holes, windows broken, electronics bashed in. He was bruised. I was bleeding. We both were crying. There was nothing I could do to stop it.

And it wouldn’t stop.

I was beside myself with worry, shame and fear, sure somehow I had caused this. Terrified that he would go to jail one day for vandalism, or worse, hurting someone in a moment of lost control.

It took months to find someone who understood. It took months to find someone that said, “This happens. He is overloaded and his brain is just shutting down. We can figure this out.”

When our occupational therapist said it, I was so relieved I sobbed.

Later she sent me an email. She said she’d been thinking about my son and me all day and wanted me to know I was doing a good job. She said she couldn’t imagine how difficult it must be. She ended her sweet, gracious note with this:

“You are loving him well. I cannot tell you how much I think that matters.”

All too often, I think we’re encouraged to focus on all the things we should be doing to help our children: the therapies, the diets, the doctors visits, the medicines, the schooling options, the life skills they need to master, the social skills they lack.

And we do. We need those things.

But it has been my experience that those things never, ever come first.

That what matters most, even in all those appointments and next steps and milestones, is the love you already feel for your child.

Please never feel bad about that. You’re a mother. You’re designed to love your children in a way that defies all logic. You can second-guess yourself when you give in and take him to the pet store. You can second-guess your decision when you discontinue one therapy to pursue another. You can second-guess whether leaving him at school today was the best decision.

But please, never second-guess love. Never question the love you have for your child.

Because there’s no such thing as spoiling a child with too much love.

Because love is always the best treatment plan.

Because love looks past duty and bears all things, believes all things, hopes all things and endures all things.

We are mommas.

We love.

And it matters.

A version of this post originally appeared on Not the Former Things

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