When Many of Your Child’s ‘Firsts’ Happen With Therapists

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It could be said that one of the many joys of parenthood is witnessing “firsts.” Mothers often long to witness their child turn over, crawl, walk, eat “yucky” peas and blurt out, “Mommy.” My journey as a mom is a bit different. Many of my son Drake’s firsts have happened when I am not around.

Of course, many mothers may miss their child’s firsts. This could be due to the child being with another caregiver or being in daycare. The difference is this: Usually when a child says their first word, the word will be repeated over and over. New words will be added in the days to come, and the joy of hearing those new words wears off. Life goes on, kids develop and the routine and chaos of life takes hold. It can be easy to take those firsts for granted. But for me, one of the blessings of having a child with autism is learning never to take anything for granted.

Drake said his first word almost one year ago: “Hug.” Such a beautiful, magical, sweet word. I received a text from his therapist, Melissa, on the day he said it.

I was thrilled, ecstatic in fact. Drake said this beautiful word again, in nursery at church, to someone who loves him dearly. This gentleman told Drake to give him a hug, and out of the blue, he uttered the word, “Hug.”

I haven’t heard this word at all, and it doesn’t bother me one bit. What matters to me is that he has the ability to communicate. I believe with all my heart that Drake will talk one day. The road may be long and it will be a process, but I believe he will talk.

A few months ago, I pulled out a puzzle Drake had trouble with for many months in therapy. Because his fine motor skills are sometimes weak, he needed lots of hand-over-hand help. He hated puzzles and would object any time I pulled one out. One day, out of the blue, he put each piece in perfectly. I was astonished. I was thankful. He persevered, and with encouragement mostly from his therapists, he learned to put the puzzle together.

Drake has accomplished so many firsts with the help of the due diligence and talent of his therapists. Here is a list of his accomplishments thus far:

Drake has learned how to communicate effectively through signing. He now knows several signs and uses them to communicate most of his needs. His speech therapist, Quincey, is also teaching him how to use an AAC communication device.

Drake plays games at clinic with other kids several times a week. He takes turns,
engages and loves every minute. Because of this, now he likes to play games at home.

Drake has learned the importance of play and how to interact more appropriately with his peers. In the last few months, I’ve noticed him trying to engage with other children far more than he ever has. All of these play skills have been taught and encouraged by his amazing therapy team.

Drake now enjoys having books read to him. I think one of the great joys of motherhood for me is being able to read a book to my child.

So you see, firsts for me are not all that important. What is important is Drake’s development and success. I trust Drake’s therapy team completely. They work hard to help him learn and be successful. I don’t care if Drake utters 1,000 words to them before he says them to me. The end result is all that matters. I want Drake to continue to learn, develop and feel comfortable in his own skin. I believe it is because of these amazing therapists that he is gaining confidence and beginning to understand this complex world.  

I don’t think there are enough words in the English language to thank the people who get to witness these firsts. And while, I know we are blessed with an amazing therapy team, there are some who have not been as lucky. Each first Drake’s therapist has with him gives him confidence and assurance to do it again. When we work on things at home and he succeeds, he looks at me with a big smile on his face. That is learning at the best possible level. He is happy he can accomplish things that were once difficult for him. I know Drake has a long road ahead of him. I know there will be difficult days, but these amazing ladies have paved the way and given him so much confidence to be successful. I cannot imagine where we would be without their support, help, knowledge and love.

Little boy playing with toys

Follow this journey on Walking With Drake.

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New Program to Help Kids With Autism in the Emergency Room

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A trip to the emergency room is stressful enough, but when you add in the extra sensory sensitivity that children with autism often experience, it’s that much worse.

With this is mind, Nemours Children’s Hospital in Orlando, Florida, is piloting a new program aimed at reducing stress for children on the autism spectrum who visit the emergency room, the Associated Press reported.

As part of the program, a child life specialist is brought in and staff are trained to reduce the use of unnecessary monitors and expedite tests and consults. In addition, soothing, stress-relieving things like a separate, quiet waiting room or playroom, headphones and sensory brushes to help distract children are offered.

Research studies are underway to evaluate the pilot and the Alfred I. duPont Hospital for Children, in Wilmington, Delaware, a sister hospital to Nemours, is currently planning a similar program.

This isn’t the first time a hospital has made changes in order to make the emergency room more accommodating to those on the spectrum. In 2014, Capital Health Medical Center – Hopewell in New Jersey launched an initiative to make its pediatric emergency department autism-friendly, which included reducing the use of florescent lighting, having the options of using iPads to communicate with patients and offering “sensory boxes” near the nurses’ stations with toys of different textures for patients to choose from, NJ.com reported.

“We’ve got all these tricks up our sleeves, but it’s not so much about the hardware or software,” Dr. Zach Kassutto, director of the pediatric emergency department at Capital Health Medical Center – Hopewell, told the outlet. “It’s really, in my mind, about working with parents and working with the kids and really listening.”

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What I Want From School for Both of My Kids, With and Without a Disability

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When I try to teach our oldest son how best to respond to some of his younger brother’s actions to avoid a meltdown, he generally assumes he is “just not good with him.” For the most part, I take this as normal behavior between brothers who have an age difference of five and a half years, with one in elementary school and one in middle school.

One day after school, my older son, shared with us that P.E. was “stressful.” He explained he was in the same group with Don, who is generally an easygoing and happy kid. He does not speak in full sentences, is slower due to tiptoeing while walking or running and has trouble following directions and participating in P.E. routines. Apparently, only one girl in the group was able to communicate effectively with Don and help him participate. I was pleasantly surprised to learn that other children, my son included, viewed the ability to engage with Don as a valuable asset. This led to a conversation about how learning to relate to his brother more effectively can be a great practice for situations in school. Don’s presence during just one class did more for my son’s motivation to learn a useful social skill than all my explaining and lecturing prior to that.

Our younger son is in a special day class due to his autism-related needs, and although I appreciate the small class size, I am concerned about the exclusion and isolation it brought to his and our lives. It drastically limits his opportunities to socialize in inclusive settings. And I believe it also deprives students without disabilities in the mainstream classrooms from opportunities to learn how to engage with children of various abilities.

Up until now, I advocated for an inclusive education environment for my son with autism, focusing mainly on how it would benefit his ability to integrate into society and become a productive member. But now I also wish my older son would have more experiences like the one in P.E., more opportunities to interact meaningfully and collaborate working toward common goals with children his age who have different abilities. I think it enriches him as a human being, builds his communication and leadership skills and helps him be a better friend and brother.

Having a child with disability changed the way I see and react to other people. I realized how quick I have been to judge and to stare in disapproval or disdain. Mainly because prior to having a child with autism, I had no opportunities to socialize with people who are wired differently than me.

What I want for both of my children is a society where one is not automatically seen as a “freak” due to being different, and the other is not automatically “freaked out” due to not knowing how to react to this type of diversity. Socialization starts in the family, but the main vehicle for it, in most cases, is the school.

With the 2015 estimate by National Center for Health Statistics that 1 in 45 children in U.S, ages 3 through 17, have been diagnosed with autism spectrum disorder, I believe it’s time to reconsider how special education is provided in public schools and the impact it might have on our future as a society. Personally, I am worried seeing missed opportunities daily in both of my children’s education and social lives.

Lead photo source: Thinkstock Images

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To Those Who Say They ‘Get’ My Autism Because They Know Someone on the Spectrum

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“If you’ve met one person with autism, you’ve met one person with autism.”

I’m not sure if people don’t understand that phrase very well, or if it’s quickly forgotten.

Each and every single person on this planet is different. Where you find people with similarities, you’ll find those people also have massive differences. Between your interests, the foods you eat, your health, family, schooling, religion, parenting styles, ambition — there are so many things you could potentially have in common or not in common with another person.

And that’s a good thing! It’s what makes this world amazing! It’s what keeps life from getting boring. It’s what helps inspire others.

It’s the same with autism. We are not all the same, and it’s ridiculous to think that we are. We may have similar characteristics, have something in common — but besides being on the spectrum, we may have absolutely nothing else in common.

Some people on the spectrum might have the ability to talk, and others need help communicating. Some might have severe anxiety. Or have severe sensory issues, where even soft clothing with no tags can feel like sand paper against their skin. Another may need deep pressure, or to constantly feel textures because their body says they need it in order to feel OK.

So my child on the spectrum may be completely opposite of someone else’s child on the spectrum. Which is OK! That’s life. But we shouldn’t shame others or say ugly things to people because what we imagine autism to be isn’t the case for someone else.

Everyone’s experience with autism can be unique.

And while I appreciate people trying to understand autism and be more aware, your cousin’s friend’s brother who has autism probably isn’t going to end up being the same as me or my kids who are on the spectrum. So you might not “get it.” It’s really about the wording we’re using.

But you know what you can say?

“My cousin’s friend’s brother has autism, and I think that’s pretty cool. He’s a really great kid. What’s autism like for you? I’d like to learn more.”

I don’t know too many people who would turn down the opportunity to raise some awareness and share a bit about themselves or their children.

Lastly, for those who feel the need to compare and contrast people and kids on the spectrum and then belittle others for disagreeing or having a different experience, the rule applies to you, too.

Stop comparing. It’s fun to find similarities, but stop disputing the differences. Everyone is different.

If you’ve met one person on this earth — you’ve met one person on this earth.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? 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. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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When People Wonder If My Daughter Really Has Autism

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I’ve seen the looks.

I’ve heard the whispers.

Nobody actually says it to my face, but I see them wonder. “Are you sure she has autism?”

People have a narrow view of autism. They seem to think they would be able to spot a child with autism a mile away. They envision a nonverbal child lining up his cars. They envision a child who can recite statistics about Mars.

But that isn’t the reality of my child. That isn’t the experience in my house.

My child will greet you. She will say hello and make eye contact. She can be quite social and has no trouble answering your question of, “How are you today?” with a response of “fine.”

But she may not be feeling “fine.” It takes effort to muster up that response. She would likely much rather be in her room with her headphones on and her heavy blankets. When you are asking her how she is, her brain may be latching onto sounds and it can take effort to quiet them in her head. The feeling of the seam on her sock may start to send an overwhelming sensation pulsing up her body, causing her skin to itch and tingle. The lights in the room may seem too bright, making her head pound. But while all of that is going on in her body, she manages to look you in the eye and muster the words “I’m fine.”

So how does she do it?

Autism in girls like my daughter can look quite unique. She has distinct instincts, so she learns to model and copy. But children with autism can have difficulty transferring information from one situation to another. She comes to learn her friend Jane thinks it’s funny when she says a certain phrase, and she may expect everyone to think it’s funny. So when Suzy starts to get upset by the same thing, the world becomes a confusing place.

girl lying on her stomach on grass
Jessica’s daughter.

The strain and stress of holding it together can become a huge weight to bear. It can become too much to contain. It needs a release. It needs an outlet. This can be where aggressive, demanding or oppositional behaviors come out — or at least that’s how it appears to the outside eye. The reality is that underneath is likely confusion and isolation and anxiety.

Autism is a spectrum. It is not a one-size-fits-all diagnosis. While the spectrum includes some general traits, those traits do not present themselves the same way in all individuals. So people will wonder and whisper and question our diagnosis.

I won’t carry around my assessment papers to prove to the skeptics that my daughter has autism. I shouldn’t have to. There should be less judging and more acceptance. There should be less questioning. So please don’t question if my daughter really has autism. Trust that she does. Trust that she is working hard to find her place in a world that can often be difficult to understand.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? 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. Check out our Submit a Story page for more about our submission guidelines.

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What I’ve Learned in My 10 Years as the Mom of a Child With Autism

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I’m not big on anniversaries other than my wedding day.

But this month is a huge anniversary, one that needs to be recognized and shared. You see, this month 10 years ago, my son Justin received his autism diagnosis months after his initial one of pervasive developmental disorder. For the first time ever it was official, written on his pediatric charts, used when charting his future educational course. It was the first time we ever used the word “autism,” said the word out loud, tried it on for size.

His diagnosis coincided with a whirlwind of decisions my husband and I had to make. Although our school district would be taking Justin the following September at the tender age of 2.5, after viewing their program we realized our son would need more, and that he’d never receive it in Virginia. We also had only eight hours monthly of early intervention services that did not include applied behavioral analysis. We were quickly realizing if we wanted to do our best by our son, we needed to relocate to New Jersey, both for its school and early intervention services and proximity to our families. I spent hours researching where to live, going by word-of-mouth recommendations rather than observation as none of the school districts would let me visit prior to moving. We were thrown so many loops, but we asked questions, went online and soaked up as much information as we could.

We learned.

Ten years later, I’m able to look back at so much of what I’ve learned as the mom of a child with autism for a decade — wisdom I’d like to pass on to any of you just starting your journey.

You will learn that no matter how close you are to people, some of them won’t get your life. You will learn to let them go.

You will learn to value your child’s progress in incremental steps without needing boundless leaps.

You will learn you can meet your child’s needs and will exceed your own expectations.

You will learn more about autism than you ever thought you’d know. You will learn to love educating the world about your child.

You will learn you’ll always worry about what will happen to them after you die. You will learn to live with it.

You will learn it is imperative to take care of yourself. Your child deserves a healthy parent, and you deserve to be whole, too.

You will learn that your love for your child knows no bounds. This knowledge will inspire you to do the best you can even when you’re exhausted and afraid. It will carry you through.

You will learn, and your child will teach you if you leave yourself open.

You will learn.

mom and young son on merry go round
Kim and her son Justin.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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. Check out our Submit a Story page for more about our submission guidelines.

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