What It’s Like When Your Child Has Vanishing White Matter Disease

We have been in strict social isolation now for a year. My husband is working full time at home and I am working part time. Our 3 kids, ages 14, 12 and 10 are home with us, and though our schools are open, our kids have been remote learning since mid-march 2020.

Our youngest son suffers from a rare brain disease called Vanishing White Matter disease (VWM). He can’t stand, walk or move on his own, he wears diapers and needs help with every task, from carrying him around the house, to helping him eat, do schoolwork, change diapers. Absolutely everything. We have no home help due to COVID. His disease causes a loss of white matter, and therefore a loss of motor control, in reaction to stress. This means a fever or minor bump on the head could kill Sam. Obviously, because of Sam’s disease we are in the “high-risk” COVID category, so we have to be especially careful with social distancing.

Sounds awful, right? We should be yanking our hair out, counting the minutes until the kids can at least go back to school, but we are not. In fact, we are coping far better than most people we know, and most of the families like ours that we know are coping better as well. Why? Because this life is very similar to our normal life. So much so that it feels like we have been in training for something just like this for seven years.

The pandemic has given “normal” people a glimpse of how those of us with sick and disabled children live every single day. We have coped so well because …

We know how to live with constant uncertainty.

Courtesy of Allyson Buck

Families like ours live with uncertainty every second of every day. We are always waiting for the other shoe to drop, wondering if today will be the last with our son. We live knowing the difficulties of our life now don’t even begin to compare with the horrors that lie ahead of us. Never knowing what the next day will bring forces you to take each day as it comes and to find a way to enjoy the journey.

We fear the future.

Courtesy of Allyson Buck

This seems at odds with the point above, but it isn’t. We live with an ever present fear bubbling below the surface. Those of us with terminally ill kids are waiting for the day to come when they will take their last breath. Those of us caring for children that will need lifelong care, worry who will care for their child when they no longer can. Our future is one that I dread, not one that I look forward to. During the first year after Sam’s diagnosis, the fear felt like a constant yoke around my neck, an impossible weight that would never be lifted. But over time I learned how to cope. I cope by actively trying not to think about it. Of course this is impossible to do all the time, but I make a conscious effort to enjoy the present and have learned to minimize the worry. We learned the hard way that the things we worry about are rarely the things worth worrying about.

Our lives are paused.

Courtesy of Allyson Buck

Feels like your life is on hold? Welcome to the world of families with sick kids. It has felt like our life has been on hold for years. Like many families with kids with physical disabilities, we have had to make very expensive adaptations to our home, meaning a move is not possible. Very often one parent is unable to work in order to care for your child, meaning putting any career hopes on hold. You become reluctant to do anything that will rock the boat. Insurance, job flexibility and security are so much more important when your child is sick and disabled. Anything that is at least kind of working doesn’t change. We don’t plan more than a few weeks ahead, because our future is so uncertain.

We are together all the time.

Courtesy of Allyson Buck

I remember very clearly the first summer after Sam was diagnosed. It was hell. We were used to being constantly on the go like many families, and suddenly Sam lost the ability to walk and we were home and together all the time because it was so hard to go out. And it was awful. After that first few months, though, it got easier. We really got to know each other; we spent so much time together that we learned how to live with each other and enjoy being together. Now, we are so used to each other that being home all the time hasn’t changed how we interact with or react to each other — meaning I actually really like having them home all the time, and I am going to miss having them home when life goes back to normal.

Our lives are limited.

Courtesy of Allyson Buck

We are confined in what we can do and experience by the limitations of our son. We can’t do most of the things that able bodied, healthy families take for granted. Everything needs to be adapted for his limited abilities and we need to adjust our expectations accordingly. We are used to not having a routine, we are used to last minute changes of plans, we are used to having to sacrifice what we want for the “greater good.” Our healthy kids have spent years having to make accomodations for their brother, not being able to do so many of the things that their peers take for granted. COVID-19 has shown us this has built resilience. Of course they are getting tired of being home, especially since all of their peers are back to school and activities. But there have been no tantrums, meltdowns, breakdowns or fighting any more than usual.

We are lonely.

Courtesy of Allyson Buck

Loneliness is a constant way of life for families like ours. I feel lonely, even when surrounded by people — in fact, the more people, the lonelier I tend to feel. When your life and priorities and perspective is so different from almost everyone you come into contact with, it is very hard to relate, to find that common ground so necessary for connection. So I feel lonely, except when home with my family or with close friends that I don’t see often enough. I honestly feel less lonely now than I did pre-quarantine. Large, anonymous events are the ones that I struggle with the most, so COVID did me a favor in cancelling so many of those this year.

COVID has given everyone a glimpse of what so many special needs families live with all the time. For most people, COVID life will one day be a distant memory, but for many, we will keep living this life day in and day out post-COVID.

This is not an easy way to live, it is often incredibly difficult (as the whole world has now discovered). I often feel envious of people who have normal lives, how they live without the knowledge that one day their world will collapse. Ignorance truly is bliss. But this does not mean we are unhappy, exactly the opposite. This knowledge and perspective and change of lifestyle has given us more years of true joy and contentment than we would have had if Sam had not become ill. Though the price for this is way too high.

The post What It’s Like When Your Child Has Vanishing White Matter Disease appeared first on Scary Mommy.

When He Outgrew ‘Cute’

When he outgrew cute
The looks changed from compassion to concerned
Towards him
And towards those who supported him.
And sometimes disgust
Overshadowed concern
As he stubbornly clung to his ways.

When he outgrew cute
The calls increased
Calls desperate for help
Desperate for summer options for a fifteen-year-old in diapers
Desperate for respite
Desperate for adaptive equipment
Desperate for anything that would assist a non-verbal man child
Or anyone
And the voices were silent
Or they whispered –
Sorry.
Sorry.
Sorry.

SDI Productions/Getty

When he outgrew cute
His movements were no longer celebrated
But instead feared
Violent head banging
Aggressive pulling
Dangerous optimism
With the strength of a man
And not that of a child.

When he outgrew cute
The damage began
Damage to walls
Damage to others
And damage to himself
And this damage
Wreaked havoc on more than just objects in his path.
It wreaked havoc on psyches as well.

When he outgrew cute
The walls caved in
And the house became a tomb
And the isolation suffocated those within
As they desperately yearned to belong
To something
Somewhere.

When he outgrew cute
Milestones were no longer encouraged
And his future grew dim
And symptoms of PTSD set in
For those who loved him and had been
Rattled by his screams for years.

When he outgrew cute
Mood altering drugs were doled out like candy
One option after another
For him
And also –
Suggested for his caregivers.
Drugs to dull the pain
Drugs to pacify
Drugs to silence the demons

When he outgrew cute
She outgrew herself
As every ounce of strength was poured into him
And she got lost in the daily grind
Lost in the sleepless nights
And invisible behind the never ending tasks

When he outgrew cute
She outgrew silence
And she raised her voice
To join the cacophony for change
And her battle cry rose –
A better tomorrow!
For him
And for those who loved him.
Because when he outgrew cute
He outgrew society
And that’s simply not an option.
For anyone.
Anymore.

When he outgrew cute
She found the strength to move forward
To move towards advocacy
And move towards hope.
She found the strength
To keep going
And keep growing
And she found the strength
To just keep living.

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A Non-Exhaustive List Of What It’s Like To Love A Neurodiverse Child

What it’s like being the mother of special needs children

It’s endless meetings with numerous professionals to have plans written up and approved.

It’s working with different agencies to make sure your children are receiving and utilizing every single resource that is available to them.

It’s the frustration of spending hundreds of dollars and hours on creating plans that don’t get implemented properly, or at all.

It’s creating a non-profit organization to bridge the gap of limited resource availability in a rural community so your children (and others) don’t miss out on opportunities to help them thrive.

It’s writing grants to fund programs for people you don’t know.

It’s developing awareness walks, campaigns and training programs so that your community can be set up to support all of its members.

It’s learning to navigate an extremely complicated system, then supporting others so they don’t have to do it alone.

It’s feeling like you have mastered autism just to wake up to a whole new set of challenges.

It’s constantly advocating on their behalf when professionals are not adequately trained.

It’s being hated by people who interpret advocacy as personal attacks, when all you are trying to do is speak for your kids when they can’t do it themselves.

It’s the expectation that you’ll sugar-coat the issues you need to raise with professionals, even though they don’t do the same for you.

It’s balancing the feeling of others working with your children while trying to ensure your children receive the best available services; a balance I will spend a lifetime working to achieve.

It’s the expectation that I praise professionals for their good work, when I can’t remember the last time someone said that to me.

It’s fighting with sports agencies to make accommodations to adapt programming for your child.

It’s giving up when the fight doesn’t seem worth it.

It’s sitting in meetings with people who don’t understand and listening to what you as a mother can do better, being told to “read to them and speak to them so they will speak.”

It’s receiving an autism diagnosis and being relieved that it wasn’t a lack of reading to them or speaking to them that caused their learning delay.

It’s the constant feeling that you could be doing more for them.

It’s psychiatry appointments to make sure your head is where it needs to be for your family.

Maskot/Getty

It’s being prescribed Ativan and tranquilizers for the days that you feel like you are drowning and cracking under the pressure.

It’s taking course after course to become educated enough to have a say and keep on top of new research and therapies.

It’s lying awake at night worrying what the future holds for your children. It’s feeling jealous, at times, of other parents who have typical children.

It’s cringing when those parents say they “understand” and they “have been there” – when you know that they have absolutely no clue.

It’s envying those parents who drop their kids off at school or sports events with a quick goodbye, wave and “I’ll be back to pick you up.”

It’s somehow finding time to maintain your mental health, dating and social life all while hearing the whispers of other people who feel inclined to pass judgments on how you chose to do that.

It’s being annoyed when other parents complain of their children’s “meltdowns” when they have never actually experienced one.

It’s being in a constant state of thinking ahead, planning and foreseeing signs of a meltdown before they happen.

It’s the guilt that happens when you miss these signs and must watch your child melt down. It’s trying to ignore the judgmental stares of other parents when this happens.

It’s trying to make professionals see your children’s behavior for what it actually is, symptoms of their neurological disorder, and not just some kid who is bad and doesn’t listen. Although that can sometimes be the case.

It’s knowing the difference.

It’s staying up most nights to make creative visuals, schedules, and reward systems so your children can better view and understand their world.

It’s trying to convince yourself that you don’t care what other people think of you, then crying on the bathroom floor after a meeting when you realize you do.

It’s having to take leave from work so you can be available when receiving the multiple calls a day from the school to come pick up or manage your child.

Kinzie Riehm/Getty

It’s trying to utilize autism funding. Contrary to popular belief, it isn’t an easily accessible pot of cash readily available to use at your leisure.

It’s listening to some parents say things like “must be nice to have an autism diagnosis and have funding.” $6000.00 a year to help cover the cost of a behavioral interventionist, behavior analysis, a speech and language pathologist, occupational therapists and many more specialists, costing upward of $100 an hour, isn’t something that I believe falls under the “must be nice” category. Accessing this funding is a part-time job without pay on top of that full-time one you already have.

It’s filling out form after form after form, scanning, signing, emailing, following up with the team to make sure they have signed everything and will send it back.

It’s purchasing equipment and then more forms, emailing …

It’s trying so hard no to judge other parents with special needs kids who have their heads in the sand and do very minimal to support their children. The options, in my opinion, are either you as a parent suffer at times, or your kids do; it’s that simple and complicated. I 100% chose to take that burden from my children every single day.

It’s getting your children from school to lessons so they can learn what others are born knowing.

It’s seeing the world through the eyes of someone who sees and hears things on a level most people will never understand.

It’s being shown love on the most passionate level.

It’s hearing the “I love yous” and the hundred kisses a day.

It’s having the luxury of experiencing the love on a level that most don’t.

It’s the pure joy of looking into the eyes of a child who depends on you and trusts you fully.

It’s witnessing a type of innocence that has never been seen before.

It’s having family pull together to create a village for these children.

It’s being fortunate enough to have friends to call on a bad day.

It’s creating unforgettable bonds with other special needs parents who get it.

It’s remembering that someone else has it worse off.

It’s the appreciation of working with that one behavioral analyst who works so hard and tirelessly to help support a child who isn’t theirs.

It’s being grateful to have the capacity to cope and support your children.

It’s the feeling of satisfaction at the end of the day, knowing you’ve done everything possible for your child.

It’s the ability to have a unique perspective and an appreciation for things that parents of typical children take for granted. With all of the many challenges, there are also incredible benefits, and I wouldn’t change a thing.

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I Need (And Want) To Be A Mom First — Not A Nurse

The enjoyment of my son’s first steps, his first words, and every other special moment after that were partially stolen because of the constant worry that comes with being the mother of a child who suffers from a seizure disorder. Every interaction left me wondering, “What if this activity will cause a seizure—or worse?”

Massiah is medically fragile and suffers from life-threatening seizures and other complications as a result of Tuberous Sclerosis Complex (TSC). TSC is a rare, incurable genetic disorder that causes tumors and tubers to form on the brain and major organs—he currently has dozens of these on his brain, five behind his eyes, and three left in his heart, plus numerous cysts on his kidneys that have resulted in a stage 1 kidney disease diagnosis. Since 2015, Massiah has undergone routine monthly bronchoscopy and laryngoscopy to remove airway growths. Those growths have slowed down due to beginning chemotherapy in July of 2020, but they have not yet gone away.

Courtesy of LaToya Martin

While the PTSD and anxiety of being a mom of a child with disabilities have drastically overpowered the enjoyment of being a first-time mom, it has not stopped me from making sure that Massiah has the best life—and the best healthcare—possible. Shortly after Massiah was born, I moved away from Virginia where all my friends and family live to Delaware to access AI Dupont Children’s Hospital. One of the major fights I continue to battle is Massiah’s ability to have professional medical care at home. He has been able to grow up at home and thrive due to the in-home nursing that he has received through Delaware’s Medicaid program. Due to the COVID-19 pandemic, and me being a stay at home mom, I have not been able to access full-time home nursing care for Massiah. If full-time nursing were available, he would have the necessary medical care he needs, and I would be able to have the relief I need to provide myself with the self-care I need to continue to be the best mom for him.

Courtesy of LaToya Martin

Since I’m a single, stay at home mom, the state only authorizes eight hours of in-home nursing respite care per week for Massiah. Don’t get me wrong—I am so grateful for Massiah’s nurse, and for the two days a week I am able to run errands, deep clean, and practice some self-care while she is there keeping my son medically safe and healthy. But, I am beyond exhausted. It’s simply not enough. Massiah is going through chemotherapy and multiple other appointments and therapies. As his mother, it’s my job to keep him alive. When the COVID-19 pandemic hit, Massiah lost his 55 hour per week authorization for nursing care because he was no longer in school. The state’s justification is that he can only qualify for care when school is in session. This makes no sense. His condition has not changed. I am a mother, not a doctor or a nurse.

Courtesy of LaToya Martin

This pandemic ought to serve as an illustration for the state of how important home care is in keeping vulnerable and medically-complex children like Massiah at home. Delaware can ensure Massiah and others like him continue to be healthy and safe by recognizing that state programs like private duty nursing (PDN) need to be prioritized and adequately funded! This is especially true in times like this, when even taking him to the grocery store and laundromat could result in a serious infection or worse. State home care programs must be better funded so that there are enough nurses to fill the hours Delaware kids truly need. I have fought for years and will continue to fight for Massiah’s care for the rest of my life. But, that care is not eight hours a week. Massiah and I are beyond blessed to be able to have him grow up and thrive here at home, and I can only imagine how much more he would learn and grow if he were able to receive consistent medical care safely at home while I provide for him as I am meant to—as a mom. I need to be a mom first, and Massiah needs me to be a mom first too.

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My Son Didn’t Get To Go To Kindergarten This Year — But There’s A Silver Lining

This year has been challenging for people across the globe. Our family is no exception. In addition to multiple family members contracting COVID, including my five-year-old autistic son, our family experienced loss, medical complications, disruptions in education, periods of unemployment, and more. I am sure you can relate. But, thankfully, 2020 is nearing its finale. And as tough as it’s been, there have been silver linings, especially for my son on the autism spectrum.

Before COVID, my son was in an ESE PreK class in the public school system. When schools went digital in the spring, we quickly discovered learning online would be difficult for him. In the fall of 2020, he started Kindergarten at an autism charter school. The school year began using distance learning. Again, this did not go well.

In our county, students aren’t required to begin school until age six. So we decided to let him wait the extra year. He would remain at his behavior therapy center that he had been attending regularly since age three. At least we could keep something consistent for him during these disruptive and uncertain times. Soon COVID swept through the center. My son contracted the virus, spreading it to our immediate family. Fortunately, our family didn’t have severe symptoms and everyone recovered quickly.

Catherine Falls Commercial/Getty

Once my son’s COVID symptoms subsided and the quarantine time passed, he returned to therapy. At the center, he has been with the same therapist since the beginning of the pandemic. And although having him attend Kindergarten this year was our family’s goal, seeing the progress he’s made with another full year of behavior therapy has been amazing.

During my son’s bonus year of therapy, he acquired skills that once he goes to Kindergarten I know will enable him to thrive. He learned skills such as playing with peers, waiting his turn, sharing items, working independently, working cooperatively, tolerating no, listening to a story, following simple directions, using a writing utensil, feeding himself, toileting independently, and more.

Most children learn these skills organically. However, for children on the autism spectrum, like my son, these skills take significant effort and time to learn. Had my son gone to Kindergarten in 2020, he would not have been equipped with the necessary tools to be as successful as possible.

While our immediate family continues due diligence isolating ourselves from extended family and friends as vaccines slowly roll out, I continue to cling to each silver lining. I remind myself this is a temporary new normal, and eventually, we will reclaim our old normal. Students will return face-to-face instruction in a classroom full of peers. “I do’s” will once again be celebrated with hundreds of cheerful guests. Dozens of laughing children will return to dominate birthday parties, and holidays will again safely include beloved grandparents. It may seem as if we are in a long, dark tunnel, but there is finally visible light at the end.

In every dark cloud, there truly is a silver lining. To find the silver lining in your challenges, shift your perspective. – Author Unknown

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My Autistic Teenager Got His First Job, And My Heart Is About To Burst

For almost two years now, my son Jack has wanted a job. He wanted to work.

I still don’t know why he chose the place he did—a local pasta restaurant in the center of town.

He went online to their website and researched the requirements.

Carefully, he printed out the application. He sat at the kitchen counter and answered the questions about his age, birthdate, and previous experience.

He asked if he was a U.S. citizen. I assured him he was.

They hired him.

For over a year, he has washed dishes from 4:30 – 6:30 every Tuesday afternoon.

He wears a t-shirt emblazoned with the company name and logo, Table 8 Pasta.

This probably seems pretty simple. A teenager wanted a job. He filled out an application. They hired him. They gave him a t-shirt, and every week he showed up to work.

Except he isn’t an ordinary teenager.

He is a teenager with autism.

He has very little working memory, and crushing anxiety, and a tendency to, uh, obsess about certain topics.

He doesn’t read social cues.

My Autistic Teenager Got His First Job, And I Have All The Feels
Courtesy of Carrie Cariello

He doesn’t like a busy environment, or people bustling around, or the sound of the phone ringing.

The concept of money is nearly meaningless to him, and he has no restaurant experience.

Still, he wanted to work.

He applied.

It took him four tries, two pencils, and a lengthy explanation of U.S. citizenship to get the application right.

We drove into town, and dropped it off to a young girl standing behind the counter.

He waited.

He worried, because that’s what my boy does.

He worried they may never call and they would never hire him.

He worried he made a mistake on the paperwork.

They called.

They hired him.

The owner called and said they didn’t have a lot of experience with people who have autism, but they were more than willing to give it a try, and see how it goes.

He washes dishes.

He wakes up at 6:00 am every Tuesday and puts on his t-shirt. He wears it to school. When he gets home he reminds me he has to go to work and he will not be home for dinner.

Many times, he reminds me.

I drive him, because Jack driving a car is a little out of the question right now.

I drive him, and if I’m not ready to go by 4:02, he gets a little, uh, antsy, even though it’s only a 7-minute ride. He starts to pace. He goes into the mudroom and finds my shoes.

He wants to work.

He wants to wear a shirt that matches what everyone else wears, because there is no other instance where he is connected to a group of people by something as ordinary as a piece of clothing.

This week was just like every other week.

Monday night, he laid out his shirt before bed.

The next morning he reminded me he had a shift after school.

At 4:02, he shifted and paced until I found my keys.

I dropped him off and watched my tall son walk through the doors.

This week was like every other week, except when I picked him up, he had something exciting to share.

“Mom. For me. A promotion.”

His face was lit up and his eyes were bright and he was smiling. My boy was smiling.

“Now I will make. The PASTA.”

He is a teenager with autism.

He has a job.

He got a promotion.

Now, he makes pasta.

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I’m A Speech Language Pathologist, But Nothing Could Have Prepared Me For My Own Child’s Speech Delay

“So … how do I refer my own kid for Early Intervention?”

This was the question I asked myself aloud in the kitchen one day as I watched my two-year-old son play in the living room with his Cookie Monster doll. We had just celebrated his birthday, and he had a variety of new Sesame Street toys to occupy himself. I could have done without the talking Elmo, but he was happy. He looked adorable in that moment, with his sandy blond hair falling forward and blue eyes trained on the cookie-crazed blue monster in his lap, but I may have been a teensy bit biased. He was also smart, affectionate, and funny. Perfect, obviously. And yet, I worried about him. I know this sounds like a normal mom thing to do, but it wasn’t just general parenting anxiety.

My son had needed ear tubes to clear the constant fluid occupying his middle ear space around 18 months. He had never had a zillion ear infections like some other kids to clue us in to the problem, but the fluid was there all the same. A hearing test confirmed it was making it difficult for him to hear us speak clearly. The hearing loss caused by this fluid had delayed his speech development. It’s hard to learn to speak when you can’t hear what it is you are supposed to be repeating. I had never been so grateful to have taught him baby signs starting at six months. American Sign Language had given us a way to understand each other before surgery was scheduled … although I may have regretted teaching him the signs for “Elmo” and “candy.” He was making progress with the tubes in place and the fluid cleared, but still was not where he should be developmentally for his age.

I knew this, because when I am not desperate to keep my own kid alive, I’m working as a speech-language pathologist, in early intervention. For those of you not familiar with that term, Early Intervention (EI) is a  program for children under the age of three with developmental delays and/or disabilities. It may also be called Birth To Three, Infants and Toddlers, or something similar depending on where you live. Some state’s programs work with children until the age of five. (I work in Massachusetts, so some more specific details of the program may vary in your area, but the general idea is the same. I can totally hear all the EI providers exclaiming “that’s not how we do it here!”). Children are evaluated at an EI center or at home (or even virtually, due to COVID). If testing shows them to be delayed in an area of development such as motor skills or communication, they are found eligible for services for the next 12 months or until the day before their third birthday.

In general, these services are home based, where a developmental specialist or therapist comes to the home to work with the family. This is often at least on a weekly basis, for roughly an hour at a time. The service provider coaches the child’s family on how best to work and play with their little one to improve their area of delay. It looks a lot like someone giving suggestions on how to best to play with your child … because that is, to some extent, what it is. Children’s work is to play, and that is how they learn best.

Jose Luis Pelaez Inc/Getty

So here I am, a mother whose job it is to use my specialized (and expensive) six years of education to assist caregivers in helping their children to communicate … and I am now the one needing help with my own offspring. The Universe sure has a taste for irony. It was almost embarrassing. How could I help so many other children and their families, but not my own kid? I am his MOTHER. It is literally my job. I sighed. Yet as I looked at my little boy again, I realized that that was the issue. I wanted to be his mother. Just his mother, and not his speech therapist. I needed an outside view of my child, and for someone to give me strategies and suggestions for a change. I needed help, and I reminded myself that there was no reason to feel embarrassed or guilty about that.

In EI, we coach parents on how to rethink play and interact with their kids in order to help them meet their developmental milestones. Early intervention providers identify toys and activities that a child finds interesting and suggest different ways a parent may utilize those items with their child. For example, two-year-old Tommy may enjoy puzzles, and his favorite may be a farm animal puzzle. The provider’s job is to alter the way Timmy and his caregiver play with that toy to best target the area of need.

We may ask, “How can we play with that puzzle AND work on more language? Maybe we label the animals on each piece? We could make each animal’s sound (moo, baa, neigh). How about we model the words for our actions as we do them, such as ‘turn,’ ‘pull,’ ‘push,’ and ‘put in.’” These may seem like simple ideas, but they turn an activity the child enjoys into an opportunity to bathe that child in a whole new set of vocabulary. We don’t have to just count the pieces, or ask them to say please. A physical therapist may coach a parent to hold the pieces up high so a child with low muscle tone has to reach up high for them. An occupational therapist working on sensory regulation could suggest hiding the pieces in a bucket of rice so the child is exposed to new textures as they dig for the different animals. Most therapists and developmental specialists are trained to develop creative, personalized ways to to target multiple areas of need at once, which is called a transdisciplinary approach (in contrast to a multidisciplinary model where multiple therapists see the child to work specifically on their designated area of development.)

I could do all of these things, and had done this with countless families, and now needed to experience the situation from the other side. My son’s language was improving, albeit slowly. I also had concerns about his picky eating, and some sensory difficulties he seemed to have with certain textures. That kid would not touch paint even if it meant I gave him 1,000 Oreos, and the same went for Play-Doh. He also seemed to tire quickly when climbing and sitting unsupported on the floor, and I suspected he had some weak core muscles (sorry dude, you got that from me).

I knew he needed help with more than just speech, but like most parents, I found it hard to admit my child was anything but perfect just the way he was. It was just a tad embarrassing to have to refer my child to a service I provide for a living. I knew better, I knew there is no shame in asking for an evaluation, or services if he needed them. I reminded myself that the shameful part would have been knowing this support existed and choosing not to access it due to my bruised SLP pride. So I called. I didn’t wait to see if he just did better on his own, or if he grew out of his challenges. My son qualified for weekly visits with a developmental specialist and with an occupational therapist. He also attended a weekly EI playgroup, which let him practice interacting with his peers and following classroom routines. His progress over the next year was amazing.

Today he is a joyful three-year-old boy who never shuts up, and loves playing with other kids. He eats a larger variety of foods, and his strength has improved exponentially. I may be the only parent who applauded her child when he could finally climb UP the slide, which requires a good amount of core strength. I’m so glad I didn’t wait, and he didn’t miss out on those services.

The problem early intention providers are seeing is that parents and pediatricians are waiting too long to make referrals to have their child evaluated. Some families wouldn’t even know that EI exists, if they didn’t know someone else whose child has received services. They can’t ask for something they don’t know is an option. Others know about EI but think they need a prescription or referral from a doctor in order to have an evaluation. Pediatricians, DCF, NICU staff, and many other professions do recommend EI services, but parents can also self refer. Let me say that again.. You are the expert on your own child, and you can refer your own child if you have concerns.

Some pediatricians also seem to be hesitant to refer children too early. It is never too early. Even if that child is evaluated and found to have no delays, they can be re-referred anytime before they turn three if new concerns pop up. It’s not a one shot deal. For example, children are regularly discharged from services for meeting motor milestones only to be evaluated again and resume services due to concerns with their social skills or because parents can’t underhand what they are trying to say when they talk. Research shows that while some children will catch up unassisted, some 20% will need longer term support and there is no way to tell which of those two groups a child will be in.

Even as someone who works in the field, early intervention was amazing for our family. Having someone else to give me ideas on activities, tell me how to use strategies during the regular routines of our day, and to look at my son with a new perspective was priceless. It wasn’t always easy, and sometimes downright upsetting to have someone point out a challenge you didn’t even realize your child was having. Yet by my son’s third birthday, when we had to say goodbye to our providers, I was incredibly grateful that they had been in our lives. I learned so much about myself as a parent and about what my child needed to succeed and how to give it to him. Even with a masters degree in communication disorders, I needed help being educated in how best to be the mom my son needed me to be. And we are better for it.

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I Worry About The Amount Of Screen Time Necessary For My Teen With ADHD

My nagging has gotten out of control since COVID-19 hit. Just as I am adjusting to being both my kids’ parent and their elementary and high school teacher, they’re adjusting too, and it’s hard on all of us. My 13-year-old son hears from me every single day, “Turn off YouTube and get back to work,” or my favorite as of late, “Are you in study hall (which is 80 mins)? Study hall is meant for studying!” I mean, I don’t even take myself seriously anymore, and I am certain he stopped weeks ago.

What my wife and I do take seriously in our household as his moms, is that he and our daughters get too much screen time. We all need a break at the end of the day, and our fallback after playing outside and before dinner is allowing them to have television for an hour, then settling down by playing a fierce game of Guess Who.

I worry every day about what the constant access to the computer or television is doing to the developing brains of my three kids, especially my son, who is both on the autism spectrum and has Attention Deficit-Hyperactivity Disorder (ADHD). By the time his school day ends, I am ready for the computer and all screens to be turned off, even if he’s not.

As a family who works every single day to support one another, being home together has added a new level of understanding of what it means to show up for one another. For my son, this means that we support his need for improved social interactions with others through the array of extracurricular activities we’ve signed him up for. He participates in our church’s children’s choir (via Zoom for now), takes piano lessons, has joined a musical theater group, and runs cross country for the first time this year. In all, he gets out of the house and engages with other people which he needs (heck, we all need).

We’ve signed him up for activities even during a pandemic, because if we do not, it will have detrimental effects on how he formulates and understands healthy interactions with other human beings outside of the screen.

I cannot help but think about my own schooling as I wake my kids up every morning, sleepy-eyed, encourage them to put on real clothes and come down to turn on their laptops from school. When I was in high school, my English teacher rolled in a square television to show us a black and white movie, a Hitchcock film I believe. When I desperately contacted my son’s school counselor asking them to turn off YouTube from my kids’ computer, her response was, “We can’t do that; teachers use it for teaching.” Such a difference from my school days. We couldn’t turn on YouTube and watch anything, and I am better for it. But I digress. 

These are the facts: my kid (s) are going to school online and they know how to navigate the internet. They are forced to attend school in ways that I have never needed to. The coronavirus has given us a new way to look at what’s normal for the reality we are living in now, and like it or not, this includes spending an excessive amount of time in front of a screen.

How I’ll survive this school year is a question I ask myself every single day. What has been a godsend is that we’ve been able to keep to the school schedule, and that consistency is essential — especially for a child with ADHD or autism. Assistant Professor of Special Education at Indiana University, Sarah Hurwitz, Ph.D., says in an article for California Life HD, “These kids rely on the predictability of a set schedule. Schedules not only provide cues about what they should be doing, but they can also help reduce stress and anxiety.” In many ways, having a consistent schedule has been our saving grace, for all of us, not just my son.

I look at screen time and my kids’ access to it in a kind of disjointed way. I understand its importance for school; even if I don’t like it, this is what we have. As the parent here, I need to figure out how to take myself out of the equation and look at how screen time can be beneficial, especially for kids like mine.

Randy Kulman, Ph.D., says in Psychology Today, “Many kids with ADHD are impulsive and do not display the best judgment or problem-solving. Keeping kids in the house and engaged, even with screens, is preferable to the risks of infection in the community. Encourage video chat, massively multiplayer online video games with their friends, social media, testing, or even an old-fashioned phone call for children and teens who miss their friends. Remember that they normally spend seven hours a day with their peers in school.”

The internet, as we all know, can be unsafe — and for the teen with ADHD and autism, it can even be a dangerous place. While my role as a mom continues to morph into a hybrid version of my past self, what I am learning is that I too need to adjust to how much screen-time my teen is getting, and get on board sooner rather than later.

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To My Other Kids Not On The Autism Spectrum

I know that is how you must often feel, like my “other kids.” The older three siblings of “the one with autism.” You have never said it. But sometimes in the middle of the night, I lie awake blanketed in guilt.

When we spoke on the phone earlier in the day, I told you how excited I was that your little brother had his first non-meltdown haircut. But I forgot to ask you how your day was. I forgot to tell you how proud I am of you. I forgot to tell you I love you. Your younger sibling’s needs are so big that sometimes I forget to fill your smallest ones.

On most days, it takes more of what I am even capable of to parent your younger sibling. The day-to-day mundane tasks I never even stopped to consider when you were growing up, are all enormous challenges for your little brother. We work hard to help him overcome things that, for you, came easy. He needs more of me than you did, and because of that, now you get less.

Courtesy of Amy Nielsen

I remember when each of you was born. It always surprised me how much of my day it took to take care of a newborn that slept most of the time! In the first few weeks, days would go by before I realized I had not showered. But I loved every minute of those early weeks when I could bundle you each up like a baby burrito and snuggle you until my heart’s content.

Then came the wiggly toddler phase. Whew! The days got long and messy. You strew building blocks, baby dolls, and crushed Cheerios from one end of the house to the other. You had bruised knees from those first wobbly steps, and I scrambled to keep up with jotting down in your baby books the words you began to learn rapidly.

Once you hit school-age, life shifted again. You kept me even busier. Three kids needed help with homework, three kids needed to get to soccer practice and dance lessons, three kids needed dinner, three kids each wanted three friends over. Our home was alive! I never realized how much I would miss those days—the joy of leftover pizza in the fridge and piles of sneakers at the front door.

Your little brother was born when most of you were nearly grown—an unexpected blessing. As a baby, my experience with him was familiar, but when he became a toddler, I knew things were much different. He struggled to communicate, which caused him and me so much frustration.

Courtesy of Amy Nielsen

He struggled if his routine was disrupted. Everyday tasks such as mealtimes and diaper changes were giant hurdles. Our family was overwhelmed. After his autism diagnosis at age three, his life and mine would become consumed with therapy and doctor’s appointments.

His progress over the years has been remarkable, and he is now quite the animated and funny little guy. But he still has progress to be made, and it will still require a part of me that you must give up.

As unfair as that is, I believe the trade-off is the amazing people you have become as siblings of a child with autism. When he sees you, his face lights up as if real-life superheroes just walked in the room. I am sure you can tell by how he squeezes your necks as if he will never let go.

He expects nothing from you, but when you show up with the smallest of trinkets, it is as if you have given him the world. His innocence and vulnerability are reminders that we all have a role in sacrificing for those that need more.

To my older three children, remember you are not “my other children,” you are all my children. I may not have equal time for you, but I love you all equally.

Love, Mom

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Our Family’s 2020 Education Story: We Had To Pull Our Son With Special Needs From His Charter School

Educational choices for children has historically been a fairly easy decision for families. Most families enroll their children in local public schools where they attend with friends within their community. Some families chose to send their children to private schools for religious reasons or specialized programs. Other families elect to homeschool their children as a reflection of their educational choice. But for families of children with disabilities, educational choice is never an easy decision, and given the current state of the COVID-19 pandemic, that decision has never before been more difficult and agonizing.

Our Family’s Education 2020 Story

My youngest son is 5-years-old and has ADHD and Autism Spectrum Disorder. During the beginning of the pandemic, we applied to a highly regarded autism charter school. We were thrilled when we got the news that our son was offered a Kindergarten spot for this upcoming school year.

Despite COVID-19, during the summer, he continued working with his behavior therapist. She has been in our quarantine bubble since the beginning and without behavior therapy, my son struggles with everyday skills that impact his daily living. We approached the summer with the goal in mind that come August, he’d either attend the school for face-to-face instruction or virtually, which is called distance-learning.

As August approached and the virus was still raging through our country, we elected for the distance-learning option. Our county offered a 10-day trial before the official back-to-school start date so students and teachers across the district would know what to expect and could work out the kinks.

On day one, I felt totally prepared. I had a Token Chart ready to reward him for each task and had the daily schedule printed and posted. The school had done a fantastic job of telling us what to expect and providing necessary resources. My son’s therapist would be here to offer her support and I was confident this would go off without a hitch.

I couldn’t have been more wrong.

It turns out, six hours of distance-learning per day wasn’t going to be as effortless as I had imagined. We had to constantly redirect him to the computer to interact with the teacher. Because she was in the room with other teachers, she was understandably wearing a face mask. Verbal and nonverbal communication is already difficult for children on the spectrum so only being able to see his teacher’s eyes made it difficult for him to know what she was saying. There was also so much happening on the screen at one time that he didn’t know what to pay attention to. That made him lose interest quickly and it went downhill from there.

Over the next two weeks, we began to witness a severe regression in behaviors that we’d all worked so hard to help him overcome. While each day he should have been learning to tolerate longer periods of time in distance-learning, he was tolerating less and less. So by the end of the first ten days, he was barely making it through ten minutes.

An Agonizing Decision

We Had To Pull Our Special Needs Kindergartener Out Of Distance Learning
eclipse_images/Getty

Pre-COVID, my son experienced great success in a wonderful ESE PreK program. He is an enthusiastic learner who thrives in an appropriate educational setting. And all summer, he eagerly put on his backpack and headed out the door to see his behavior therapist. Each afternoon when I’d pick him up, he would excitedly greet me while his therapist gave me mostly positive reports of his success that day.

So during the last ten days of our failing distance-learning trial, my husband and I debated each night after our son went to sleep. What should we do? Should we tough it out with distance-learning and hope it gets better? Should we reconsider sending him for face-to-face instruction even though we also felt it would be clunky and awkward for him? How would he be able to tolerate wearing a mask all day? How would he understand what the teacher was saying when he couldn’t see her facial expressions? How would he understand the concept of socially distancing when he still hasn’t grasped the concept of personal space? Should we just continue with behavior therapy for another year and wait and see what school looks like in 2021?

The Advice My Mother Gave Me That Worked

Every day I would speak to my mother as I tried to talk through the best option. The best option for his behavioral and educational needs. The best option to protect our family as best we can from COVID-19. As well as taking into consideration the impact that decision would have on our mental health, because the previous ten days of distance-learning had already started taking a toll.

Yesterday she told me this, “Make a pro and con list of all the choices and that should make the decision obvious.” A mother’s wisdom. Instead of researching online the likelihood of children catching and transmitting COVID-19 or how to help a child with autism learn to sit for long periods of time at a computer, how about take a pen and a piece of paper and write down my thoughts. Write: something I do every single day.

The Decision

Using the pro/con approach helped us simplify the decision for our son’s educational setting amid these complex times. And we decided this: we don’t know what the outcome of distance-learning or face-to-face instruction would be for our son given these unique circumstances, but we do know he thrives in behavior therapy. So will just keep doing what we’ve been doing. He will continue with behavior therapy and his Kindergarten year will be at home in Mom School. Much of the world is in some way functioning in pause, so for now, we’ll pause along with it.

Maybe writing a pro/con list can help you make the “Education 2020” decision for your child that you’ve been agonizing over. Rather than relying on Dr. Google or listening online to hours of school board meeting debates, make the decision personal. And while I know that your family’s decision may be different than the one we chose, that’s the beauty of choice. You get to make the decision that is the most right for your child, and your family in this given moment of time.

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