5 Common Misconceptions About Special Needs Parents

As the mother of a child with special needs, people often go out of their way to offer me words of encouragement, support and praise. Most of the time, I sincerely appreciate the good intentions behind these confidence builders. Sometimes their words are spot-on. But every once in a while, their comments could not be further from the truth.

In order for others to truly understand the complexity of being a parent to a child with special needs, I feel the need to dispel some common misconceptions I’ve heard.

1. “You have so much patience.” The truth is, I don’t. Each morning, I rush to get everyone dressed and out of the house on time. Sometimes this results in a panicked and impatient me yelling. I get easily annoyed in the car. I was the child who perpetually asked, “Are we there yet?” I’m now the woman behind you in traffic shouting, “Stick a nickel in it,” as I do my best to make it from work to my kid’s next therapy appointment on time. I loathe waiting — on a phone call, for a table at restaurants and on the table at the ob-gyn.

Having a child with special needs does not make me immune to bouts of impatience. Parenting is a delicate practice in patience. And with time, I hope to improve — if I can wait that long.

Read more: http://themighty.com/2015/11/5-common-misconceptions-about-special-needs-parents/#ixzz3qOc4pq2N

Bright Spots

Not that long ago, my husband gave me his honest feedback about my blog. "It's good," he said -- followed by an unexpected and awkward pause.  "But, sometimes I feel like you really focus heavily on just the bright spots in your day. You don't often talk about how rough it is."

I took a deep breath to let his words sink in -- just the bright spots.

Am I being entirely honest and open about the dark places I've been to on this journey?  Am I making it all sound too easy, too perfect?  Is what I'm writing a fair and accurate depiction of what I'm living and of who I am?

I want it to be.  I think it has been.

But the last thing I want to do is give the impression that I have it all together, that I never fail, that I have no regrets -- that would be a lie.

Some days stink -- they super stink.  Some days stink so bad, that all I want to do is lock myself up in a room and hide.  This rarely happens because my kids could easily and successfully lead a search and rescue mission.  They always find me. Other days stink bad enough that I consume my worries and fears alongside a gallon of ice cream.  This happens more than I want to admit.  Yes, some days are downright, hands down stinky.

I agonize over my daughter's future.  I cry over IEP notices, and I sob when I see her broken down into percents on assessments.  I remind  myself that, "She's more than a number" -- over and over again. Yes, sometimes even numbers hurt the heart.

I compare my daughter to her typically developing peers.  I watch other kids run up the playground steps unassisted, and I let jealousy and disappointment run rampant.  I tell myself that, "She will do things when she is ready."  At night, I cry at the potential that she may never be "ready."

I question if I'm giving enough of myself.  I feel that I fail some days at helping her reach all of her therapy goals. Some mornings, I skip making her walk down the stairs herself -- because I'm tired, because my hands are full, because carrying her down the stairs will be easier.  I sometimes wish I was anywhere but on the floor at Target, next to my daughter, who is throwing an epic tantrum.  I want to run -- but I can't.  I feel guilt because sometimes, I'm too lazy, too exhausted, too self-centered.  I hate myself on those days.

I fear I'm giving too much.  My mind is numb from too many doctor's appointments and not enough rest.  My heart heavy from searching for a diagnosis and never finding one.  I have bruises and scratches and bite marks and a sore back -- a reminder of what I give daily.   I cry when she hits me.  Not because it hurts -- although it does -- but because there is nothing I can do to help her. And I feel helpless too.

And just when I feel like I'm about to drown in a misery that only comparison and worry and fear can bring, someone always steps in. My bright spots show up: Our amazingly loving and supportive PT and OT and my understanding and compassionate friends and family.   They give me the reality check that I so desperately need sometimes.  They lead me back to the "sunny side of the street." They make me laugh and smile.  They give me the boost of confidence that I need to get through whatever I am facing.  They help me refocus on what really matters, and they remind that:

There are no guarantees in life.

There are good moments in a bad minute.

Sometimes it's okay to take time to replenish myself.

Love is a lesson in sacrifice.

I've had my fair share of dark moments and despair on this journey, and in admitting this, I must acknowledge the people above, who have always been willing to share a little bit of their sunshine with me.

My husband wonders why my writings are filled with bright spots. And he's not entirely wrong.   It's just because it is hard to stay in the shade when I'm surrounded by so much sunshine.

On the Bench

I'm perched on a faded park bench.  A band is playing Violent Femmes' cover songs.  The music fills the hot and humid summer air, as the sun beams down on my shoulders.  In front of me, you dance.

I watch you from my spot on the bench as you twirl -- almost effortlessly -- to the music.  You spin -- your arms outstretched and open to the world around you, a contagious smile spread across your face. I smile too as you clap your hands and stomp your feet to your very own rhythm.  You run in circles and squeal with delight.  I watch your feet hit against the hot cement, and as the music increases in speed, so does your running and your laughter.

I want to join you on that hot cement dance floor -- just a hand's touch away.  I want to be "right there" to catch if you fall.  I want to be the first person to kiss a scraped up knee and wipe away any tears.  I want to prevent you from possibly getting hurt, because for two years, that's what I have done.  For two years that is who I was -- your protector, your comforter.

And for two years, each step you have taken, I have been right by your side -- to help you if you stumble, to hold you if your muscles tire out before your mind does.  There's not a mile nor an inch that you have traveled where I haven't been at your side --prepared to soften any blow that may come your way.

I have spent two years anxiously anticipating every move you made.  Part of me thrilled at the idea that you were making progress -- that you were walking and that you were running.  Another part of me worried about the potential of you getting hurt, so I never moved too far away from you.

I prayed for you to be able to walk and run.  I told myself that when that day came, I would cherish each step you took.  I promised myself that I would never complain, like some parents do, about how "once they start walking, they just won't stop."  I was okay with that.  I would follow you to the ends of the Earth, cheering you on each step of the way.  I still will.

But I know my place today.  I am supposed to be more than an arm's reach away from you, unable to catch you if you fall this time.  Today, I am not supposed to be right at your side. This dance is yours and yours alone -- each twirl, each clap, each smile and each giggle is yours.  My place is on the bench.

To The Crazy 8 Employee Who Saved Me

To Connie (an employee at Crazy 8),

The morning we met, you saved me.

There was no way you could have possibly known, from your place behind the cash register, how fearful I was to walk into your store. My smile masked the anxiety that’s prevented me from even entering the mall in the past. But for some reason, that morning I mustered up whatever courage I had left, and I walked in.

You had no clue as you glanced down at my daughter in her pink stroller that this was an “inchstone” for us. Until this moment, shopping for her and for me was often anything but pleasant. For the longest time, because of her low muscle tone, my daughter was unable to sit upright, which meant she couldn’t sit in a cart. I had to carry her when we shopped, and when she could finally hold herself up in a cart, the sounds, people and movements were too much for her to process. My heightened sense of anxiety didn’t help the situation either.

Our shopping trips were often filled with tears and tantrums and stares and embarrassment, so I stopped shopping all together because I was afraid of the “what ifs.”

What if she starts screaming?
What if people stare at us?
What if I cannot calm her down?

The fear-inducing “what ifs” ruled my existence. Till I met you.

When I walked into the store, you asked if you could help me — a common question you surely ask every patron. I said I was fine.

I wasn’t.

Every inch of me was tense. I needed your help. You must have sensed it.

You walked over to me and started talking — not about the clothes in your store or the latest sale but about my kids. You were warm, sincere and kind, and I immediately felt calm and welcomed. I wasn’t afraid you would judge me if my daughter had a meltdown. I felt like you would help, just like you’d offered to do when I entered your store.



As I picked through clothing, I mentioned to you my daughter had special needs. You said your own son did as well.

Surrounded by clothing racks and the steady sound of shoppers’ feet, we discussed therapies and doctors. We lamented over false and absent diagnoses and hospital stays. During a moment that was supposed to be stressful and fear-evoking I found comfort and reassurance and an unexpected sisterhood.

In that moment, you helped me reclaim my confidence and taught me that if I allow my fears to control me, I run the risk of missing out on some amazing experiences and people.

While I continued to shop, we talked, and I felt at ease. My daughter was surprisingly content too. There were no tears, no tantrums, no stares and no embarrassment.

For the first time in a long time, I walked out of the mall with a smile on my face, and I left my fear right next to the “two for 88 cents” rack.

Thank you, Connie.

A Letter to Governor Rauner -- Early Intervention

Governor Rauner,

You don't know me.  We have never met.  Our paths have never crossed -- until recently -- when I read about your "proposed" budget cuts to Early Intervention.  My heart sunk.   I couldn't catch my breath.  Tears streamed down my face.

And since we have never met, you can't possibly be aware that I am the mother of an amazing two year old, Ceci.  You don't know that she has a smile that can light up the room.  And a belly laugh that is unbelievably contagious.  You don't know that she loves puppies and ice cream and dance parties.  That she gives the best and the biggest hugs. Or that she is the strongest and most determined person I have ever met.

You also don't know that she has hypotonia and a gross motor delay.  That she recieves Physical Therapy services through Early Intervention.  That without these services, without our amazing physical therapist, we would be lost.  SHE would be lost.  And that fact terrifies me.

Early Intervention gives our family hope, support, and guidance.  Early Intervention gives my daughter a CHANCE:

A chance to walk and explore the world around her.

A chance to be included -- to run with her friends on the playground as their laughter      
dances around them.

A chance to do silly dances with her older sister and giggle until happy tears run down
both of their faces.

A chance to reach her potential, and in doing so, experience all the beauty life has to
offer!

And although we don't know eachother, I DO know some things:

I know that if you make cuts to this program, my daughter will no longer recieve the  services that have been so instrumental in helping her learn to crawl and walk and run and jump.

I know that without these valuable services, my daughter will slowly and surely fall further behind her peers.  And SHE has worked so hard to get where she is -- harder than you could ever begin to imagine. How dare you threaten to take that away.

I know that my daughter will not be the only child that will be affected -- hurt -- by these cuts.  There are many other "Cecis" out there -- children who need Early Intervention services and who deserve a chance.

I also know that there are other moms like me out there too -- moms who love their children with every fiber of their being and want the very best for them.

And let me tell you a funny thing about moms:  when you make one of us mad, you have ignited the fury of the masses.  And NOTHING is scarier than a bunch of pissed off moms.

Governor Rauner, in closing, I realize that I may have misspoke earlier.  Ceci may be determined, but I AM the most determined person I know.   I'm an avid letter writer, and I've got nothing but time.

If you make these "proposed" budget cuts to Early Intervention,  I can guarantee you that you will be hearing a lot more from "yours truly"... Ali Cummins.


Photo courtesy of ALH Photography

16 Days of Awareness: A 7 Year Hypotonia Snapshot - Amanda and Shellie's Story

When my husband and I had been married five years, we were blessed with our daughter.  For her privacy, we will call her Shellie.  This is a small part of her story. 

The day she was born, Shellie was so limp and weak, a nurse said she had never seen a baby with such a weak neck!  And after fourteen days in the NICU, some oxygen, and a blood transfusion, Shellie came home.  

She laid around for weeks.  We would hold her for hours trying to feed her.  She ate so slowly due to her weak mouth muscles; it would take a whole hour for her to drink a small bottle.  She ate seven hours a day, since she drank seven bottles, and this was just so she could stay in the 20% for weight.  For a social butterfly like myself, this was very difficult.  I could hardly go anywhere for her first seven months because I had to pump her breast milk and then feed it to her since she was too weak to suck.  So we pumped and fed all day long -- for seven long months. 

When Shellie wasn’t eating, we would place her on our chests to do tummy time and to bond with her.  She could not lift herself at all, even her head, until she was five months old.  After that, she began dragging her body across the floor, including her face, so we’d put down soft blankets so she wouldn’t get rug burn.  Slowly, at around nine months, she got to where she would crawl. 

She still could not sit up.  She would lean to the side if you sat her up and would fall to the left.  So we would always prop her up.  One day when she was eleven months old she sat up, all by herself.  I was ecstatic except I wasn’t expecting it, and she was being changed on a twin bed.  Well, she sat up and fell to the left -- right off the bed.  Boy did that scare me!  I was right there and it happened so fast.  She was ok.  We’ve done scans since then and nothing happened to her from that but it was very frightening.  She just didn’t have the balance to stay sitting up even though she could sit up.  Even to this day at seven years old, she will lean to the left and I have no idea why.  There is no brain damage saying that her leaning should happen. 

When she got a bit older we tried to help Shellie walk.  Her knees would buckle, and for a while she didn’t know what to do with her legs.  After she knew what to do, her knees still buckled along with her ankles.  We spent hours walking her around holding her under her armpits.  Boy, does that hurt your back!  But we wanted her to be able to walk.  We finally convinced her pediatrician when she was 19 months to refer her to PT.  She walked by herself at 22 months but was quite unstable.  She had been diagnosed with Autism at this point and was a runner. One day, as we were leaving the house,  I let go of her hand for a second and she ran toward the street.  The driveway has a little bump at the bottom, and she fell head face first into the pavement.  We were devastated and dropped everything to run her in for a CT scan.  She had terrible balance, and I soon learned after that from our new PT that she needed ankle braces.  Her balance was much better once we got those because her ankles didn’t turn in, or pronate, anymore.  She fell much less often, and her reflexes got better, so she would catch herself if she did fall.  She is seven and still wears cascade ankle braces.  We also enrolled her in behavioral therapy to teach her not to run from us. 

Shellie also needed speech therapy too, due to her mouth muscles not being strong enough.  Chewing was a struggle for a little while as well.  We would massage her mouth using a z-vibe and spent lots of time having her blow through horns to strengthen her mouth muscles.  The speech therapist would teach us what sounds to work on to help her talk.  Many hours were put into her physical, occupational, and speech therapies. 

I took her to play-dates.  I didn’t realize how different she was until I saw all of the kids running around and not falling without braces.  Shellie was also quite a slow learner compared to them.  We didn’t start play-dates until she was around 15 months, and the fact she couldn’t walk at that age really made her stand out.  It would make me very sad when we would go out with others, so we didn’t go a lot.  It was also a lot of work, because I had to help her walk to keep up with the others.

 Shellie started in a 2 yr old preschool class when she was 3.  It was extra hard, because on top of the social delays, she also had hypotonia.  So playing with the toys and writing her letters was difficult.    For a while, all the kids’ handwriting looked like hers.  But then there’s got better.  Hers didn’t, because of her weak hands ,and the fact her hands are still the size of a 3 year old.  It’s harder when your hands are small like that.  But she also didn’t have the control of the other 3 year olds when all of them turned 3.  She has come such a long way since then and can write them now, but it took years of practice.  

Although hypotonia isn’t in and of itself muscle weakness, it’s the people with both that get hit hard.  The kids that have low tone (hypotonia) and muscle weakness are the ones who need therapy and get left behind in things like sports, handwriting, and playing with all those neat 3+ toys with the small parts. Hypotonia and weak muscles also make for a tired child.  Shellie has always slept a lot.  She still sleeps 12 hours a night at 7 years old.  She has to go to bed at 6:30 pm to be able to get up at 6:15am to get ready for school and be there at 7:15am.

Shellie’s weakness has always been a whole body weakness, although some children with hypotonia and/or muscle weakness have weakness in a certain area of the body.  Even now we are working on her core muscle strength along with arms and legs.  

We started OT around 2 years old, and we will be doing that for years.   I remember when we started taking her to therapy.  Anytime we’d go out it would be so hard because she was so big, and even though she walked at 22 months, she could not walk at a good pace without falling, so when we went to therapy or were in a time constraint I carried her or used the stroller.  Always needing a stroller was just a struggle;  I got a whole new appreciation for people in wheelchairs.  Always having to use the ramps and such really makes you have to put more time to do things.  I was so happy when Shellie got where she could walk well enough so we didn’t need the stroller. I still use a wheelchair for long distances and long days out though because her hypotonia causes her to be tired.

 I remember the time I tried to teach her to use a tricycle.  First there was the teaching, because she has autism and learns so much slower than everyone else.  But after she knew how, she still couldn’t make it go unless it was on flat ground because of her hypotonia/muscle weakness.  We practiced a lot and she got where she could independently go from one side of a basketball court to another on a straight path.  I know because that is where we practiced-a church gym.  But even now at age 7 she still has trouble.  I just recently found her a tricycle with special handlebars that also help the bike move.  So she uses her arms and legs to move the bike.  She can finally go up a slight slant so she can ride around the culdesac and up the road.   

I can honestly say the years have been long.  I would sometimes say, “Lord, please help her ___ and I’ll be happy.”  Then that would come to pass and I wouldn’t be happy.  I’d want more.  So I’d say it again with my next request and so on and so forth.  Slowly but surely, my requests would be granted, but even today I long for Shellie to be able to keep up with her peers.  Her other diagnoses hinder her as well, but if she just didn’t have the hypotonia, things would be so much easier.  The good news is that Shellie is a hard worker and is such a happy child; it makes therapies and all the hard work easier.  It is hard on my husband and I, but we love her and help her the best we can, and really that’s all you can do.  Sometimes you just have to take lemons and make lemonade. 

Check back tomorrow for a new story, a new journey, and a new message of hypotonia hope!

Amanda Powell is a graduate of Georgia Southern University and a stay at home wife of 12 years.  She and her husband Scott reside in South Carolina with their daughter with special needs which include but are not limited to hypotonia, autism, and epilepsy.  

16 Days of Awareness: A Parent of a Special Child - Alyssa and Everett's Story

"Becoming a special needs parent feels like being pushed in to the deep end of a pool, and you don’t know how to swim. So you kick frantically, gasp for air, and fling your arms hoping to find something –or someone- to hold on to. Suddenly, because your survival depends on it, you figure out how to float.”

 –ellenstumbo.com

It was a gift when I finally found other parents with children like my dear Everett. This quote was one of the first things that I remember seeing on the hypotonia group page. I immediately saved it. It described my feelings exactly. My journey in a world unknown.

I had no idea how much our family would change after having our second son, Everett. When he was born, Everett had a very short umbilical cord. So short, that he couldn't be brought up to my chest. He had to lay on my tummy. His fingers were all tightly squished together in an unnatural position with his thumbs tucked inwards. He didn't attempt to move them normally either. He cried with any movement. Everett preferred to be still.

As the pediatricians made their rounds, they pointed out his fingers. They were concerned. We even had a consult with the orthopedic surgeon on staff regarding the issues with his hands. Our first visit to the pediatrician’s office made me cry. Our pediatrician talked about a possible syndrome. I cried so hard my shoulders were shaking. I sobbed. He saw characteristics that led him to believe that we needed genetic testing. Our hypotonia journey started with Everett being less than 2 weeks old. From that day on, we were doing testing and treatment. He had hand therapy at the local hospital. He saw the chiropractor weekly. Everett started OT and PT at only 8 weeks old.

At 12 weeks, my maternity leave ended. If you could call it a leave. All I did was worry and attend specialist visits and therapy appointments. It was hell at times. But, somehow, by the grace of God, I was able to endure. We had so many people praying for our family and our little champ.

At some point after returning to work, I was talking to my mom on the phone about how I just couldn't handle it all. I was completely overwhelmed. Working full-time, attending appointments, doing exercises with Everett at home. She was reassuring me that I was doing a great job. She was comforting me saying that most parents feel overwhelmed at times. I had two children now. Not one, which was already a big change, but now, I also had one with special needs.

Wait.

What?

I have a child with special needs?...

Yes, Everett has needs that are special. Not every child has what he has. So, yes, I guess I have a child with special needs. Everett is not typically developing.

That sunk in deep that day. It was the first time I had really thought about it.

I had to find other parents out there on this wild ride. I had to. I prayed to God that he would allow me to find moms who knew what I was going through. I needed that support. I felt lost.

I received messages from three women in the next two days talking about their children’s therapy experiences. They also expressed their prayers for us. God sending me love and encouragement through other moms.

A month or so went by, and I found a wonderful group on Facebook with other parents whose children have hypotonia. It was like coming home. I immediately felt a connection with the moms sharing their journey. We all have different stories, but share a common bond.

God had a hand in guiding me to that group. No doubt. He still guides me today. The power of prayer has been realized in Everett. I've never felt it so strongly in my life.

Everett continues to show us every day how small steps can lead to big success—each inchstone at a time. I am definitely a parent of a special child.

Check back tomorrow for a new story, a new journey, and a new message of hypotonia hope!

Alyssa is a mom of two beautiful children and a speech pathologist. She currently resides with her family in Illinois.

16 Days of Hypotonia Awareness: Never Give Up - The Journey of Lucas and Joleen

Our youngest son Lucas, was born in April of 2011.  Lucas was, and still is, a smart, loving and silly child. He is such an important part of our family, and the center of much love and attention.

Lucas before his diagnosis

During the first six months of Lucas' life, he was typically developing and meeting milestones.  However, at the seven month milestone checkup, we noticed that he had started to fall behind.  I questioned the nurses at our local health unit, and they tried to reassure me that nothing was wrong.  But, their dismissal of my concern did not sit right with me.  I was determined to find out what was going on with my Lucas.

My next stop was to our local hospital, where they quickly reassured me once again that all was well.  At this point, I was pretty sure that all the staff at the hospital thought I was nuts, because, despite their advice, I refused to give up.  I was going to find out what was causing Lucas' delays.

After several visits to the hospital, and still no answers, I finally drove the 300 kilometers to the city of Edmonton to see a specialist.  I was disappointed that I had to drive outside of my community to get the help that I wanted and that I knew my son so desperately needed and deserved.

My disappointed disappeared after meeting Dr. McGonigle and Dr. Chutur, the specialists in Edmonton.  Unlike the previous medical staff, they listened to our concerns and they validated our feelings.  They ran numerous tests, because they agreed with me that something was wrong.  And because of them, my worries went away.

Genetic testing, MRI's -- you name the test, and we did it.

After a few months and inconclusive testing results, there were still no answers.

Lucas two years after his diagnosis

At that point, we were informed that we had done all the testing possible.  The only one answer to Lucas' condition was something called hypotonia, and it happens to 1 in every 100,000 births.  Upon hearing this, I felt a sense of relief.  Finally, an answer -- hypotonia.   Having a diagnosis allowed me to find ways to help Lucas on his journey.  And although this is only the beginning, I know things will only continue to get better.

If I could offer advice to other mothers, it would be to trust your instincts -- go with your gut. Do not go by what one doctor says, especially if you have doubts.  Remember to seek out other opinions.  And most importantly, never give up.

Check back tomorrow for a new story, a new journey, and a new message of hypotonia hope!

Joleen is a wife and mother of four wonderful boys.  Lucas, her youngest, has hypotonia.  Joleen currently resides with her beautiful family in Alberta.