My pregnancy and Garrett’s birth were not out of the ordinary.

Around the age of six months, Garrett failed to reach developmental milestones.

At nine months, our pediatrician referred him to a physical therapist, but I was not worried.

I just assumed that he had inherited my athletic prowess.

Around the same time, my friend Jill was growing concerned about her daughter, Leah. Leah was a year older than Garrett and she still was not talking.

She was also very tiny and not gaining much weight. Leah was Jill’s second daughter, so she didn’t have my blissful ignorance to hide behind.

One Sunday morning, we were catching up at church.

Leah had grown several inches, gained weight and was talking like a typical toddler.

“It’s been since her surgery,” Jill told me. “Once she had her tonsils and adenoids removed, she was like a different child.”

“We are taking Garrett to the Ear Nose and Throat specialist,” I informed my husband, Charlie.

We were both getting aggravated at Garrett’s repeated ear infections and our pediatrician’s lack of concern about it.

Garrett also was not sleeping. EVER!

It’s a classic symptom of SMS, but we were convinced he had sleep apnea.

I made an appointment with the ENT behind our pediatrician’s back.

He was adamant that we wait for Garrett to “outgrow” the ear infections, but the ENT agreed with me and Charlie.

We scheduled the surgery to have ear tubes (grommets) inserted and tonsils/adenoids removed.

Six weeks later, our new pediatrician diagnosed Garrett with Smith-Magenis syndrome.

“I really thought the chronic ear infections caused his delays.”

I keep repeating this to anyone who would listen. “Garrett took his first steps two days after the surgery.”

Very wobbly, and nothing like the first steps I would later witness with his brothers.

“He is eating better and not choking on his food.” Well, not as often. “He is sleeping better, too.”

But not as much as a toddler should have been sleeping.

For eighteen months, I was able to pretend his delays were “not that bad.” Even after the diagnosis, a part of me thought the test was wrong.

But, as Leah and the other kids at church grew, Garrett’s delays became more obvious. He didn’t speak until his was six years old.

He wore a diaper until he was in middle school. But, the hardest part was his loud, crying tantrums that would go on for hours.

He cried when the organ started playing. He cried when I read along with the prayers. He cried when everyone stood up.

He cried the whole entire service.

Fortunately for our family, Garrett was always accepted and invited to be a part of the activities: Christmas Pageant, Vacation Bible School, and Sunday School.

I have heard terribly sad stories from many of my SMS mom friends about how their children were asked to leave church until they could “learn to do better.”

We didn’t hear that from anyone…family or friends.

But, I could still feel myself pulling away from those I knew BD. It was just so much easier to be with other special needs families.

I felt more comfortable around them.

I felt more comfortable with people that I had just met than I did those lifelong friends from MY nursery school days.

I couldn’t understand it myself. No one said the wrong thing. No one did the wrong thing.

Their only crime was living the life I had imagined. When I was in their company, I was reminded of the dreams I once had for Garrett.

For my own sanity, I had to shut my curtains and create a world that was less painful.

For me.

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Today, two girls from the middle school came down and asked if anyone in our class wanted to be in their talent show dance.

Garrett’s teacher sent a note home when he was in the 5th grade. Garrett said he wanted to, so I let him go to the gym with them and Connie.

Connie was Garrett’s aide and she could get him to do anything.

Anything.

Please sign the permission slip and return to school. “I don’t think this a good idea.”

I read the note to Charlie. “You know how Garrett cries over loud music. And the talent show doesn’t start until the evening. He’ll fall asleep backstage waiting for his turn. I can see him having a meltdown in front of the whole school.”

“Let him try it,” Charlie didn’t agree with me. “You know he’ll do anything for the ladies.” That was true.

Garrett was a typical pre-teen boy in some ways, especially when it came to girls.

And Connie had volunteered to stay with Garrett and his classmates backstage.

Waiting can be very difficult for Garrett.

“What size shirt does Garrett wear?” Jill called me out of the blue. “Why?” “Leah and her friend have asked Garrett’s class to be in the talent show. The rest is a surprise. Don’t ask me anything else.”

When the night finally arrived, I was a nervous wreck.

Connie met us at the school door so I could drop Garrett off and drive away. Just seeing me walk into “his” school can be enough to cause Garrett’s behaviors to escalate.

I did not want to take any chances. I waited in the packed gym without any idea of how Garrett was doing backstage. Their dance was the third or fourth act, which is an eternity in “Garrett Time.”

Finally, it was his turn.

The music started and it was loud. I held my breath. Made a wrong turn once or twice.

Pink’s voice filled the gymnasium. Mistreated. Garrett’s classmate, Matt, jumped out from behind the curtain on the left.

There was no doubt he was ready to dance!

Misplaced, misunderstood.

Garrett walked out from the right, behind his other classmate, Katie. Mistaken, always second guessing.

Leah stood next to him and started a slow clap. Garrett watched her and copied her moves.

Underestimated, look I’m still around. Underestimated. I couldn’t hold back my tears.

Underestimated.

Not only did I underestimate Garrett. I had underestimated Leah.

I had spent too much time in my own grief that I had not noticed how amazingly well Leah and the other children had accepted Garrett. Pretty, pretty please…

The group on stage moved their arms up and jumped completely around, in a coordinated move.

Don’t you ever, ever feel. Like you’re less than, less than perfect. It was the clean version. This was a family event, after all. Like you’re nothing.

You are perfect to me.

It was then that I noticed the shirts. Jill had bought blue t-shirts for Matt and Garrett. Katie, Leah and Leah’s friend, Jordin, were dressed in pink t-shirts.

All five shirts had the word PERFECT spelled out across, in bold white letters. You’re so mean, when you talk. Jordin spun Matt around in a vaguely familiar square dance move.

Leah took Garrett’s and Katie’s hands for a double spin.

I could not believe that Garrett was able to remember so many moves. About yourself.

Leah pointed at Katie and Garrett. Garrett pointed at himself and grinned like he was so proud. He absolutely loved being on that stage!

And I had considered making him miss this moment.

For fear he could not do it.

For fear of a meltdown.

For fear of being reminded…again…how different he was from his peers.

Those peers jumped and cheered when the song was over. A standing ovation. Garrett bowed. Several times.

Garrett was perfect.

As perfect as his four friends up on that stage…especially the two middle school girls who reminded me how sweet and wonderful these long awaited moments are if you don’t let them pass you by.

I want the world to know that being the mother of a daughter with autism comes with unspeakable joys as she acquires skills and accomplishes achievements that I never dreamed possible.

I want the world to know that my daughter as well as all others with autism are not a burden on their loved ones or on society.

I want the world to know about and appreciate all the incredibly, unique, and extraordinary talents, gifts, opinions, and points of view that people diagnosed with autism have to offer the rest us.

I want the world to know that children who have autism will grow up to be productive, contributing members of society and assets to the communities in which they will someday work and live.

• One in sixty eight people have been diagnosed with autism in the United States.

• There are more than 3.5 million Americans living with an autism spectrum disorder.

• One percent of the population in the UK has an autism diagnosis.

• Once percent of the entire world’s population has autism.

I want the world to know that people with autism are not going to go away.

They will continue to come out and the world needs to be prepared to the completely, totally, and unconditionally accept, fully include, and welcome them into its communities.

I challenge you to get to know a family or an individual affected by autism and see how you can help them change the world.

Life seemed to stand still when Bethany was first diagnosed.

It really bugged me that all around me family, friends, and strangers were scurrying about, carrying on with their lives as usual.

Didn’t they know that there were seriously ill children in the world?

How dare they!

I’d sadly and wearily peer out of our hospital room window, watching the cars and trucks speeding down the highway in the distance.

I’d see people walking down the sidewalks, living their lives as usual and wonder why this horrible thing was happening to my precious baby girl.

Of course, being shut up and isolated in a hospital room, exisiting on little to no sleep, and having no one to talk to except doctors and nurses for months on end only served to exacerbate the issue.

After Bethany finally became well enough to go home, I assumed life would eventually return to normal.

But how could it really?

My daughter was permanently disabled. Life would never return to normal, but we would eventually find and begin to function within the parameters of a new normal.

I recall thinking how ridiculous my friends and family were to complain and argue about such trivial, and meaningless issues as what color paper plates to use for Thanksgiving Dinner, whether so and so’s dress was too revealing, or how terrible their child’s runny nose was.

Their problems were nothing compared to ours.

My daughter was experiencing excrutiating pain, nearly dying every day from some new and rare complication associated with brain tumor surgery, having near constant seizures, and learning to adjust to a new way of life as a person with disabilities.

While I can’t tell you that I never get jealous of healthy families any more, I can say that eventually life did begin to settle down a bit.

We grew accustomed our new rhythm and adjusted to our new roles within the family. We developed a routine that worked for us. This change didn’t just happen overnight though.

Each one in our family had to work long and hard to achieve our own semblance of peace with what had happened to us.

Some of the things we did to find that peace were as follows:

• We attended support group meetings. Talking through issues with others who understood what we were going through and knew exactly how we felt was very helpful in the healing process.

• We educated ourselves and our other children about our daughter’s condition. We learned how we could best help her reach her potential and live a happy fulfilling life.

• We sought both practical and financial help from agencies for the disabled.

This help included service coordination, respite care, therapies, and specialist consultations for our daughter, medical assistance, and special equipment such as a wheel chair and iPad, and even sign language classes.

But what really helped me personally get over my feelings of jealousy or that no one elses crisis could possibly be worse than ours was one day just realizing that even though someone elses crisis may seem trivial or even ridiculous to me, theirs is just as devastating and traumatic to them as my daughter’s chronic condition is to me.

It wasn’t until I was able to be compassionate, kind, and understanding to others facing problems in their lives that I was able to get over myself, and stop feeling superior because of going through such a catastrophic experience that I was finally able to come to peace with our new normal!

There was a time when I could not imagine I would ever say this to him.

Garrett began speech therapy before he was two years old, right after we received his diagnosis of Smith-Magenis syndrome (SMS). Speech delays are a common symptom in children born with SMS.

“I wamp, wamp, wamp!”

He used to choke so easily. From a young age, soft baby food like applesauce would cause him to gag.

By the time he was five, my husband and I were experts in the Heimlich maneuver. He never had a lot of interest in eating.

He would drink enough milk to float a ship, but we could not get much real food in him. I assumed that was because he had such trouble swallowing.

We bought fortified drinks like Boost to make certain he was receiving enough necessary nutrition.

“No!” I looked over at Garrett from my usual spot in front of the dishwasher. “You cannot talk until your mouth is empty.” And now, in the teenage years, meals at our table resemble feeding time at the trough.

In the early days, I would take Garrett to one of his different therapies: speech, physical and occupational each week.

It wasn’t too difficult at first.

When Garrett was two, our second son Patrick was born. We had to purchase a double stroller because Garrett was still so wobbly on his feet. “I  wamp wilk.”

At first, the speech therapist just worked on trying to get Garrett to blow…blowing bubbles from a wand and blowing pieces of paper across the table with a straw.

“Your mouth still has food in it.” After our third son Brennan was born, juggling three kids in a two seat stroller was a real circus act.

But, I dragged all three of them in and out of the therapy appointments; hoping that all the exercises and activities would help Garrett to reach his full potential.

Another struggle we had was getting him to brush his teeth.

Garrett was very defensive when it came to anything touching his mouth. At the end of each speech therapy session, the therapist would put on a glove and massage the inside of his mouth. Garrett hated that! And I do mean HATED! “I ed I wamp wilk!” I had enough.

I put my dishcloth down and stood over Garrett’s chair. “I said you cannot talk with your mouth full of food. It is rude. And gross. Do NOT say another word with your mouth until it is empty!” I turned back around just as Garrett knocked on the table.

I spun back towards him prepared to begin a real LONG lecture.

And just then, Garrett pulled out another activity the speech therapist taught him: sign language. “I” ….he signed the letter “i” up to his chest. “Want”…his very first sign. I believe it took him all of 3 seconds to learn it. “More”…I had completely forgotten this sign.

We had not used it in almost a decade. “Milk”…this sign is the motion one would make while milking a cow.

And Garrett makes it with all the gusto of “eight maids a-milking”.

“Please”…we had not learned the sign for please.

What a statement of our parenting! But, once Garrett began talking, we did teach him the phrase “I want” always ended with “please”. Since he could not speak, Garrett made up his own sign for please: he clasped his hands in a begging motion and held them under his chin.

“Well, he didn’t say another word,” Patrick walked by just in time to point out the obvious.

What else could I do? I filled up his glass. “Thank you,” Garrett signed. “You’re so welcome,” I answered.

 

“They do this thing” I gushed. “Where they grab your finger with their whole hands and they don’t let go.

That is their way of saying their first hello, they are pleased to finally meet you and that they love you.” “Wow,” they replied. “

All that from touching you?”

“Yes – all that from touch.”

Touch. It is quite powerful really when you think about it.

It is the first unspoken conversation with your child.

It can comfort in the dead of the night.

It can soothe away an ache. It can reassure them as you walk through busy streets.

It can applaud them with a single pat.

It can express your love when no words come close.

But what happens when your touch means something different to your child?

When a stroke of their arm fills them with fear?

When an offered object is viewed with distrust?

When an unexpected brush of a sleeve can make them fretful?

When simple every day activities can send them into “fight or flight” mode?

Tactile defensiveness is part of sensory processing disorder.

This is when a person finds it difficult to process and act upon information received through the senses – sights, sounds, touch, tastes, smells, movement and balance, body position and muscle control.

The SPD Foundation indicates that 1 in 20 children experience symptoms of sensory processing disorder to an extent that it affects their ability to participate in everyday life.

In my son’s case his inability to explore his environment in a typical way due to his hypotonia (floppy muscles) affected his brain’s interpretation of touch.

This tactile defensiveness makes him feel overwhelmed and for the longest time he avoided touch when possible.

For a while there he didn’t even recognise his hands as his own as they received so little feedback from the world around him.

Over time his hand use has improved but hand function still remains the most delayed part of his development.

We have consulted with both NHS and private therapists about ways to improve this and received many useful suggestions such as:

• Using a vibrating hand massager to stimulate the senses

• Tapping the hand and reminding him that this is Gabriel’s hand

• Introducing different tactile stimulations slowly over a period of time

• Using deep pressure on the hands instead of a light feathery touch

• Messy play with foam, sand, water and food.

All has helped at different stages – the most dramatic being the hand massager in the earlier years.

After a few seconds stimulation he could tolerate holding a previously shunned small object.

Now he will flick everything he comes across, tentatively at first, then as he grows more comfortable with the item he will explore and experiment as any toddler would.

How we rejoiced when he reached into a toy box to pull out items and cheered as he used his hands in propel himself around the house in a nifty bum shuffle.

The most wondrous moment by far though was the first time he reached out with his tiny little hand and rested it on top of mine.

I hadn’t realised what I had missed out on in all those years.

Couldn’t have known how huge this gesture would be. Because in that instant I understood that holding your child’s hand is way to touch their heart.