Jennifer and her daughter.

In the fall of 2006, my daughter Sydney, who has Smith-Magenis syndrome, was about 10 months old, and I was just beginning my long relationship with early intervention. I was sitting in my kitchen with the social worker from the birth to three program and she wanted me to sign papers that would confirm Sydney’s eligibility for preschool services at our local public school. I remember feeling enraged at her request. I told her I had every intention of sending Sydney to the same preschool that my other two boys attended. She tried to gently convince me to at least sign the papers just in case the need came up, but I flat out refused.

A year later, I signed those papers.

In January of 2009, Sydney began a special ed preschool at our local public school. She was in an integrated classroom and received every special service they offered. I let go of my desire for her to go to “regular” school and accepted that she would be receiving special education services for the duration of her academic life.

In the fall of 2013, I was once again confronted with the same situation. I was in a team meeting for Sydney talking about her progress at school. She had been struggling quite a bit and the team was having a very difficult time managing her daily educational and behavioral needs. The situation had been brewing for a while and things were finally coming to a head. It was at that moment when the director alluded to the idea of outplacing Sydney in a special needs school. I was furious. Although on some level I knew that this was probably the right thing to do, I was simply not ready to accept it. Similar to 2006, I flat out refused to discuss that as an option and demanded we try harder to make a mainstream special education program work for Sydney.

We spent the next year working very hard at forcing her to fit in a place where she did not belong. Sydney required so many accommodations to her school day, it was near impossible to meet all of her needs. She required constant one-on-one support, a small classroom environment, a safe place to have a meltdown, tremendous flexibility in her schedule, and more than that, she needed an individualized curriculum that addressed her unique style of learning. Although in most cases public schools can manage these requests, in Sydney’s case it was much harder than it seemed. I could see her program falling apart right before my eyes and as hard as I tried I was unable to fix it. I refused to give up and continued to hold out hope that her current school would individualize her program and accommodate all of her needs.

Unfortunately, the program deteriorated and Sydney stayed in the resource room with an aide all day. She was no longer attempting any mainstream opportunities, and she was consistently missing services due to her unpredictable behaviors. It became painfully clear that public school was too big, too chaotic, and too stressful for Sydney. I knew what was coming and I was not happy.

About two months ago, in another team meeting, the issue of outplacement was again put on the table. This time it was not presented as a choice. The school admitted they could no longer meet her needs and keep her safe in their environment. We would need to begin the process of securing a special needs school for Sydney.

What I needed to find was an environment that accommodated her – a new place that did not require her to change, but rather allowed her to be just herself.

What I realized over these years, is the harder I tried to force the issue, the more stressed and anxious everyone, including Sydney, became and the less successful she was in in these circumstances. The staff was overwhelmed by her unique needs and her behaviors became progressively worse. I knew in my heart if Sydney could just be herself and be accepted for it, she would eventually thrive.

It has taken me years to learn that inclusion is not for everyone, and I should not feel bad or guilty about that notion. I know for most people, a mainstream education for a special needs child is the ultimate goal. I felt the same way.

Back in 2006, it was so important for me to have Sydney attend the same school as her brothers. Now the most important thing is finding the right environment that will meet her needs and can accommodate to her differences.

I am tired of feeling like a failure when it comes to her school experience, and I no longer want to feel defeated by a system that just did not work for her.

Being included feels great, but being accepted for who you are feels even better.

Follow this journey on Strength for Sydney

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My daughter, Sienna, was diagnosed with Smith-Magenis syndrome (SMS) when she was 4 weeks old and just days after undergoing open-heart surgery to save her life. As I searched for more information about this rare chromosomal abnormality, I came across a lengthy list of characteristics associated with it, including global developmental delay, cognitive delay, sleep disorder, self-injurious behavior, aggression and attention-seeking behaviors.

Missy Longman with her daughter, Sienna.
Missy Longman with her daughter, Sienna.

I wrestled daily with the fears I had for my daughter’s future during those first few years of her life. Smith-Magenis syndrome is a lifelong disorder that has no cure and can be an extremely difficult syndrome to manage.

However, nothing I ever read about SMS told me anything about who my daughter is, who she would become or what a privilege it would be to be a part of her life, which inspired me to write this letter to her for her 10th birthday:

Dear Sienna,

As we close out the first decade of your life, I can’t help but feel so many mixed emotions about hitting this milestone. It’s a birthday I have both feared and hoped for. As always when it comes to you, I’m overcome by a web of paradoxes. But with all of these conflicting feelings, I also have a sense of clarity about our life together, and there are some things I need you to know and some promises I need to make to you.

I’m sorry.

I have made many mistakes, and I’m certain I will make more. They began at the time of your diagnosis. I’m sorry I paid more attention to the label you were given than I did to you. I’m sorry I allowed myself to believe that life would be anything but wonderful simply because you came with a list of genetic predispositions. I’m sorry I was sad more than I was happy during that time. I have so many regrets, my darling girl. I wish I could relive those days and tell you, and myself, that it really is going to be OK and the joy you would bring to our family would surpass any heartache we ever felt.

Thank you.

For letting me learn as I go. For accepting me as the imperfect mother that I am. For giving me the chance to start fresh everyday. For teaching me how to be more sensitive and for showing me what it means to love unconditionally. I see the world through your eyes now, and I have such a deeper understanding of all that is important. And with this new perspective, I’ve been able to trim out all that is insignificant. You’ve added a richness and a depth to my life I know I would never have discovered without you.

I’m so proud of you.

You’ve fought for your place in this world since your very first breath. You’ve overcome the insurmountable. You love freely and you enjoy your life in spite of all of the challenges you face. You judge no one and are a friend to all. Your heart is good and pure. You work so hard to do what comes so easily to others. You bring joy to the people with whom you come in contact, even total strangers. You have exceeded every expectation I’ve ever had of you. You’re my hero. I can say with overwhelming peace and confidence today that I don’t need you to be anyone else but you.

I’m ready for whatever’s next.

These last 10 years have taught me we can handle whatever comes our way. I have no idea what the future holds, and I have grown tired of trying to predict it, especially since most of my predictions have turned out wrong. I’m done with being fearful of every new stage in life, every new behavior and every what-if that crosses my mind. I’m committed to staying present with you. You lead the way, and I will follow your cue. And when challenges arise, we’ll face them together. I will always be at your side.

I love you.

More and more with each passing year. Always and forever. My precious angel. My beautiful daughter. My love.

Follow this journey on SMS Research Foundation

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“I need to call the Easter Bunny,” my son, Garrett, insisted as he stepped off the school bus.

“I don’t have his phone number,” I told him.

“We can write him a letter,” Garrett replied.

“I don’t have his address.” I didn’t know exactly where this conversation was heading, but mother’s intuition told me to end it.

“The Bunny Village,” Garrett stated with the absolute authority of most 16-year-olds.

He retrieved a piece of paper from the printer and an ink pen from the desk.

He handed them both to me and began dictating, “Dear Easter Bunny, I want a Wiggles guitar with Jeff, Greg, Murray and Anthony —” I placed a period that I had to quickly cross out, “…and Dorothy the Dinosaur and Wags the Dog.”

“You know,” I tried to break the news gently, “the Easter Bunny brings candy. I don’t think he can fit a guitar in an Easter basket.”

“Now write ‘Love, Garrett McGrevy.’” He either took the news really well, or he was ignoring me.

“I think you can sign your own name.”

Garrett stuffed the letter in the envelope and handed it to me. Usually, Garrett will write his own correspondence, but I guess this letter needed the neatness of a mother’s penmanship.

I addressed the letter to The Easter Bunny at Bunny Village and Garrett ran it out to our mailbox.

Santa had given Garrett a Wiggles guitar more than 10 years ago. However, the bunny does not have a workshop full of elves, and I was concerned that Garrett would not find this guitar on Easter morning.

letter with post-it note
The Post-it note Tina found on their mail.

A couple of days later, there was a Post-it note attached to our mail. “I heard that a letter from the Easter Bunny is on its way,” I read the note to Garrett.

“He’s getting me a guitar.”

“Where do you think he can get a toy?”

“At Goodwill,” Garrett answered. Garrett’s high school class goes out in the community one day a week for shopping and lunch. I could only imagine the scene at Goodwill when Garrett saw a treasured toy from his past.

Garrett was born with Smith-Magenis syndrome; although he faces many challenges, a poor memory is not one of them. And he would certainly not forget that the Easter Bunny was bringing a Wiggles guitar.

As luck would have it, my Aunt Sheri phoned as she was heading out for errands, and I asked her to stop by Goodwill. The guitar was gone. Of course.

The next afternoon, Garrett raced to the mailbox. There, on top of all the bills and spring seed catalog, was a bag of gummy bunnies. A card was addressed to Garrett and the return address read, “Bunny Village.”

“It’s him!  It’s him!”

Garrett jumped up and down. He opened the card. It was signed with a single paw print.

card from easter bunny
The card and Easter candies.

Who knew that our mail carrier had such great connections? She really went far above “completion of (her) appointed rounds,” and Garrett was ecstatic.

And he will be on Easter morning as well, because Aunt Sheri also has connections — or rather, an eBay account.

It truly does take a village.

A Bunny Village.

garrett with Easter bunny card
Garrett with the Easter card.

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I had this dream several months ago that I can’t stop thinking about. It really reflects how I feel about raising a child with Smith-Magenis syndrome (SMS).

SMS is a non-hereditary genetic disorder that is caused by a small missing piece (microdeletion) on chromosome 17. The syndrome is quite complex, and features associated with it include global developmental delay, varying degrees of cognitive impairment, sleep disorder, self-injury and/or aggression, mood changes and hyperactivity/impulsivity. Many SMS parents comment about their child’s incredible sense of humor and quick wit.

I think anyone raising a child with special needs or who has taken on the role of full-time caregiver could identify with this metaphor.

I will shorten it to the point, but basically I had to canoe down my huge lake every day to get through the gate out of my neighborhood. Everyone else could drive, but I had to canoe. And people would say to me, “Oh, that’s so nice! You’re getting such a great workout and what a view you have every day, so pretty!” And I would say:

Yes, you are right. It is very beautiful.

There are moments that are amazing.

It’s incredible exercise every day.

I get a perspective you just can’t get from sitting inside a car.

I feel very blessed that I have a canoe.

However, you still get to drive. I have to canoe every. Single. Day. It would be fine every once in a while. But, I do it every day.

Some days, my boat fills up with water.

Or I lose an oar.

Or my arms are too tired.

Or it’s raining.

No, thunderstorming.

No, it’s a hurricane.

Some days, I lose my boat and I’m swimming.

No, treading water.

No, sinking.

Some days, I just flat-out don’t feel like canoeing, and I want to drive just like everyone else.

The truth is, as tired as I am most days, I love my boat. I really do. I love my perspective, and this little person who I share a life with who teaches me and grows me and stretches me even when — no, especially when — I don’t want to be stretched. Or taught. Or grown.

You don’t have to canoe alone. There is a world of support out there, even for a relatively unknown and rare disorder like SMS. Throw someone an oar and ask them to help you paddle. Connecting with other caregivers who are also in a canoe gives us courage to weather the storms. Connection keeps our heads above water and fuels us with the strength we need to keep paddling through the rapids of parenting.

mom and daughter sitting on sand
Missy and her daughter.

Follow this journey on SMS Research Foundation

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When my son was diagnosed with Smith-Magenis syndrome (SMS), family and friends reminded me that he hadn’t really changed. Although he may have been the same baby I had fallen in love with, I had endured a major transformation —  I was now a special needs mom. 

moms at the park

How did I know I was different from my fellow “Mommy and Me” acquaintances? The top 10 clues are listed below.

Top 10 Signs That You Are a Special Needs Parent:

10. You have watched three generations of “Barney and the Backyard Gang” grow up.

9. Your conversations contain more acronyms than a military SOP (standard operating procedure).

8. You know that white vinegar gets “the smell” out of clothes, bleach gets “the stain” out of clothes, and bad things happen if you accidentally mix vinegar and bleach.

7. Most of your phone contacts are your child’s teachers, aides, school secretary, bus drivers, doctors and therapists.

6. You know it always comes down to two choices: laugh or cry.

5. You never leave home without a “plan B.” Sometimes, even a “plan C.”

4. Your house has more locks and alarms than Fort Knox.

3. You find yourself using sign language without even realizing it.

3. You kick yourself for not having the foresight to invent Clorox bleach wipes.

3. You are so exhausted your “Top Ten List” has twelve items because you wrote  the number three a total of three times.

2. Your retirement plans include three people, not two.

1. And the number one clue that lets you know that you are a special needs parent is when your absolute, very best friends are those parents who have a child with the same syndrome, disability or condition as yours. And you cannot imagine your life without them.

older brothers and young kids at the park

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In any other house, “the incident” would have resulted in a time out. But in our home, “the incident” was a moment that changed the way I thought about Smith-Magenis syndrome (SMS).

My oldest son, Garrett, was diagnosed with SMS when he was 18 months old. The lists of symptoms were overwhelming:  low muscle tone, speech delay, a sleep disturbance, intellectual disabilities and self-injurious behaviors. To complicate matters, I was pregnant.

Garrett didn’t even notice when there was a new baby brother in the house. He never acknowledged Patrick’s existence until he was crawling around the playroom. Garrett was nonverbal but his expression said, “Where did this kid come from and why is he touching my stuff?”

As the boys grew, so did my list of questions and worries.

What exactly does “intellectual disabilities” mean?

Will Garrett be able to walk and talk?

Will he understand the world around him?

The pre-school screening test scores painted a grim picture. Garrett was not nearly as accomplished as his classmates. And each time he would meet a new goal, like walking, they would just make the next one more complicated, like skipping. I tried to remind myself he was growing and learning new things but I continued to look well into the future and add new fears.

Will Garrett be able to go to college and live on his own?

Will he get married and have a family?

“We just need to make sure Garrett reaches his full potential, whatever that means for him,” my husband said. He continued to be the voice of reason. So, I focused my anxieties on Patrick.

What happens when Patrick surpasses Garrett in ability? It just didn’t seem “natural” to me. Big brothers are supposed to be the teachers. Little brothers are supposed to look up to their sibling.

Will Patrick be embarrassed of Garrett? I had to admit there were times, especially out in public, when I was embarrassed of Garrett’s prolonged tantrums. But the thought of Patrick being embarrassed just broke my heart.

What kind of relationship could they have if everything was opposite of how it should be? Garrett’s disability created a huge difference between the two brothers. I could not see a future where they would play, fight and bond like “normal” siblings.

I was in the laundry room on the morning of “the incident.”

When I walked into the kitchen I could see someone had bent the baby gate at the top left corner. It was just enough space for a small boy to squeeze through. I found a complicated tower at the kitchen counter. It was built from an Elmo step stool placed on top of a kitchen chair. The kitchen cupboard door was wide open.

I’m not Nancy Drew, but since Patrick was still cruising around furniture, not yet brave enough to let go and walk on his own, even I could conclude he did not bust down a gate, build a tower and steal whatever was missing from the cabinet.

unnamed

“Garrett!” I yelled from the kitchen, “What did you do?” I heard his feet making a run for it in the living room. I hurried to the room just in time to see Garrett hand Patrick a box. Garrett stood in a pile of 40 sandwich bags looking at me with such innocent blue eyes. That’s when I noticed Patrick was holding an empty sandwich bag box.

Garrett had just framed his baby brother. It was so smart, but also kind of mean.

And totally typical of a big brother.

unnamed-2

 

A version of this post originally appeared on Tales From the Trenches.

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