disabilities Archives

Category: disabilities

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June 13, 2022 by clearymf 0 Comments

Is Our Pain “Worthy?”

I found out this week that my company didn’t receive an award. We worked very hard for it; I even shelled out a substantial amount of money (for me) to produce a video for our submission. It was first-rate and I thought our chances were good – even great. So I fell down from a very high
mountain when we lost.

It was painful. We really could have used the recognition that award would have brought because we are a micro-business that needs exposure. I could have benefitted personally because I work mainly by myself and it would have been a real shot in the arm. But none of this happened and I was left wondering how to handle it.

After the initial disappointment, my next response was to tell myself that other people have much bigger problems than I do. “What about the people in the Ukraine?” I would ask myself. “The families whose children were shot? Those with terminal cancer?” I could go on – and I did.

No matter what happens, I try to convince myself that I really don’t deserve to feel bad or hurt or sad because there are so many who are worse off than I. I was listening to a podcast the other day where a politician who was badly betrayed by his colleagues was explaining his hurt, so
deep that he went into a year-long depression. But then he tried to dismiss it, saying that his problems didn’t compare to those that others in the world were experiencing.

But here’s the thing: he deserved to mourn his trauma because it was HIS, it was real and it was profound. We can’t judge what will send others into a spiral. We can’t compare our pain to theirs and say that they deserve to feel bad and we don’t. Our pain is our pain. And we need to own it and accept that we can grieve it without guilt.

Let’s be honest – having a child with a disability is a great disappointment. Yes, every child is a gift. Yes, our children bring us unanticipated blessings. But a big part of the experience is pain – often pain that we didn’t anticipate. Many of us don’t own that pain completely because we
know we are blessed to have a child at all, that we have had new doors opened to us because of it, that we have grown spiritually and intellectually through this experience.

But it is still pain. We want our children to be like the others. And we want to enjoy what other parents enjoy. So we find ways to cope, and one of them is to “excuse” our pain away. I’d like to propose that this is not healthy for us because it just gives us another reason to beat ourselves up. Yes, we are sad, disappointed, mad, hurt, depressed and a host of other things. And yes, we are allowed to feel that way, despite whatever problems anyone else is having. And we shouldn’t demean it by calling it a “pity-party.” These are genuine feelings and they’re ours.

As an old song says, we’ll eventually “pick ourselves up, dust ourselves off and start all over again.” But let’s give ourselves a minute, a week or however long it takes to be sad and know that we’re OK to feel that way.

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December 14, 2021 by clearymf 0 Comments

A Different Kind of Holiday

OK – last year’s holidays were different for sure. We were isolated, unable to see our family and friends, relegated to food delivered to our doors as we stood masked and gloved, waiting to wash off the virus. We zoomed with everyone, trying to be jolly, but it was hard and we all looked forward to returning to “normalcy.” We assumed that would come in 2021. Well – not quite.

This year, things have certainly improved somewhat. We’re shopping again and seeing our nearest and dearest with more frequency. For those of us with young kids in the family, that’s generally a big plus. HOWEVER (and there’s always a “however” these days!) – if they are too young to be vaccinated, then what? Are we going to infect them with our grocery store germs or are they going to infect us with their day care germs? Too much stress!

In addition to that, those of us with disabled children always have extra challenges around the holidays. Is it too much for them to process? Is the confusion making them harder to handle? What messages can we teach them that are meaningful but not beyond their capacity to understand? What gifts will actually enhance their lives rather than just add more “stuff?” How can we make this season “just enough” so that it is enjoyable?

In a sense, it’s the same set of questions we had when all our kids were little, but many of our “kids” aren’t little anymore. So we have to be respectful of their age and level of maturity without being either patronizing or going over their heads. Challenging!

We have all that, PLUS the real challenge of a bit of a malaise that’s surrounding a “not-quite-normal” holiday this year. I’ve talked to so many people who are having a bit of a challenge getting their Christmas spirit up to snuff. Understandable. We were ready for a regular holiday and we got this. So many of our rituals were postponed yet again – big get-togethers, trips to the Nutcracker or Radio City Music Hall, train rides, even sitting on Santa’s lap.

And we’re awfully tired of “making the best of it.” Yes, we are all incredibly lucky and we need to take deliberate time every day to appreciate what we have. I’m not dismissing that. It’s just that, for some of us, it takes more effort.

Our children with disabilities can, as always, give us good examples. After all these years, I still marvel at how my daughter and her friends find joy in the smallest things – playing Zoom Bingo, laughing at silly jokes, watching Everybody Loves Raymond, hanging holiday lights, teaching the dog a new trick. And the way they support each other is amazing! They cheer each other up when someone is sad or sick; they ask about friends who are having problems; they even send notes and gifts when a person has had a loss. (When our dog passed, I was floored by the compassion of my daughter’s friends!).

So at this “different” holiday time, we have another thing for which to be grateful – the way our disabled children can be role models for us! Let them guide us and it will be easier to “be of good cheer.” Wishing you and your families a blessed and joyful holiday. May the New Year continue to bring us health, safety, joy and gratitude. Happy 2022!

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October 13, 2021 by clearymf 0 Comments

Making Friends – Not So Easy!

As our learning disabled children get older, their circle of friends becomes smaller. It’s a bit easier when they’re in school, especially their local school, because they can connect with young people in the neighborhood. But middle school and high school bring their own challenges.

Finding Common Ground

As with all young people, they want to establish friendships with those who have common interests and abilities. Well, that’s not so easy when you have a disability and all your classmates may be “differently- abled” than you. Some may have trouble talking, reading, walking, socializing, even behaving appropriately, and your child might not fit any of those profiles. So the friendship possibilities become smaller.

Social Isolation

In fact, social isolation is one of the major problems facing learning disabled teens and young adults. Think about it. Most of our older children find friends on their own, at school, on their teams and in clubs and other extracurricular activities. Unless we find these activities for our disabled kids, they won’t be able to have that same advantage. And how much time does it require to find the appropriate social pastime? A lot!

I remember once we took our daughter and her friend to Bingo which was organized by a widely recognized group for the disabled. Our kids were so polite when we asked them afterwards if they enjoyed it. “It was good,” they said, “but everyone was a little – well – old.” Cross that one off the list!

Finding Activities That Fit

Since our daughter has three brothers, she’s grown up with sports all around her, and so Special Olympics has provided a wonderful outlet for her. The best thing about Special Olympics is that you don’t have to have the ability but rather the desire. And a big “COVID silver lining” is that, when they were unable to play because of the quarantine, they started a twice-weekly Zoom group which continues to this day. And there, they play a Bingo game that my daughter and her friend really enjoy!

A Job That Really Pays Dividends

Encouraging social interactions is just another responsibility for special needs parents. Our job isn’t easy but when we succeed at helping our kids make connections, the rewards are great. Let’s keep reaching out to each other for ideas so we can improve our children’s chances for life success.

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September 18, 2021 by clearymf 0 Comments

Our Article in EP Magazine

Readeezy is honored to have our first article published in EP (Exceptional Parent) Magazine! Here’s the link: https://reader.mediawiremobile.com/…/207412/viewer...

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September 17, 2021 by clearymf 0 Comments

Use It or Lose It! Our Brain Changes!

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September 4, 2021 by clearymf 0 Comments

Back to School 2021 – Yikes!

I always laughed at that old Staples commercial when a parent was dancing down the aisles buying Back to School supplies. Yes, I could identify, especially after having four kids on summer vacation who had worn out their welcome around mid-July.

But as much as I was happy to see them go back, it always drove me a little crazy as a teacher and parent when my kids looked upon that first day with such dread. What a terrible place it must be to evoke such misery! Shouldn’t it be fun, stimulating, interesting, fascinating? A place to engage with their teachers and peers in challenging experiences that inspired them to grow?

School – A Happy Place?

Plenty of teachers try to make their classroom exactly that. And sometimes they succeed. But often, school is a rigorous place with academic demands that have been designed by curriculum experts. What can we do to make those attractive to our students so they look forward to September with glee and anticipation?

This year, it may be especially hard to do this because of COVID restrictions that find many teachers trying to reach their students through the barriers of masks. Extreme caution and even fear will mark the first days of school until we all work things out to our own comfort level – if that’s even possible.

And What About the Special Ed?

But here’s the kick. As the parent of a disabled child, I always marveled at my daughter’s love of school. She attended almost all year with a short six-week break in the summer, and went willingly and happily to class every day. When I asked her if she had fun, I always got an enthusiastic “yes!” for an answer. There was never any misery in September when she had to go back.

So what can these young people teach us? Is there a joy we’re missing about the whole school experience? Are special ed teachers doing something different? Do special ed students have a wisdom and appreciation of learning and community that we can’t grasp?

It’s Just How They Are

For the most part, this is how disabled kids are every day. They’re accepting, non-judgmental, willing to laugh and have fun, anxious to love and be loved. Their view of the world is simple and they have few expectations. When things turn out great, they’re happy. When they don’t, they’re sad but just for a while until they are consoled and can move on.

Now, it must be said that not all disabled young people are like this. Some present difficulties that are beyond a parent’s or teacher’s ability to handle on a daily basis. That’s why we get help from caregivers, aides and other support professionals. And the challenge of handling those children and teens cannot be understated.

What Can We Learn From Them?

But is there some lesson we can learn from the disabled who seem to be tolerant, supportive and totally unbiased. They don’t see differences in color, race, age, body type – all the things that often separate the rest of us. My daughter’s Special Olympics team has a range of athletes from 21 to 54, males and females, tall, short, multi-racial, skinny, overweight, shy and boisterous. And they love each other, unconditionally.

I’m still trying to figure out how that works, even after all these years. And I hope I do. It’ll make me a much better person. And if we all did, it might make going back to school a happy experience.

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July 22, 2021 by clearymf 0 Comments

Letting Go

Letting Go – Not So Easy

It’s every parent’s dilemma – when to let go. Is it time to send them to day care or preK or summer camp? How many moms (or dads!) followed the school bus the first day your child rode alone? (Full disclosure – I did!) As your children get older, you’d think it would get easier but it gets worse because now they’re going out with their friends to a mall or concert, driving for the first time, or, one of the toughest, going off to college. The grey hairs on our heads are measured by each small slip of our grasp on our children’s lives.

What if your child has a disability?

For parents of the disabled, these events may be especially difficult. Each of us wishes a full and free life for our child. We dream of a time when they will be able to live and work as independently as possible. However, self-sufficiency requires the ability to be – well – self-sufficient. Many of us spend countless hours teaching our kids to do chores around the house, count money, travel on public transportation. We sign them up for jobs or volunteer work where they will acquire abilities that they wouldn’t have the chance to learn at home. But at what point is it safe to “let go?”

A Different Kind of Question

When parents are deciding about whether or not to send their disabled child off to some kind of independent living situation, there is one question that looms large: “Is it safe?” Of course, every parent worries about safety but normally developing children can be taught about danger in a way they will most often remember. For those with disabilities, it’s not the same; their ability to think critically is often hampered. When my daughter was working, we used to stay on the phone with her when she walked the three busy blocks from her job at Panera’s to her tutoring session, talking her through every street crossing. I remember once I fell down the basement stairs, and when I asked my daughter to call her brother, she just stared at me. Somehow, the shock of seeing me there made her unable to function.

So How Can They Live On Their Own?

That’s the question we’re facing now – and we’re not alone. As we age, we know we have to plan for our children to live without us. We’ve checked out every option – group homes, supervised apartments, licensed residences, independent housing. We’ve run ourselves ragged visiting almost every model that’s available. Many of them were admirably run but there was always a problem – too far, too institutional, not enough supervision, caregivers would come and go. We found two places that had a wonderful setup but, in each case, the success of the operation depended on one very talented person. Suppose that person was no longer there – then what?

Are We Just Making Excuses?

Since we have a daughter, my husband is being especially protective. He keeps on saying that he understands it’s important for her to learn about living on her own. But it’s going to be especially hard for him to make the leap. However, I believe that if the right opportunity came along, we’d know it and, while biting the bullet, we’d do it. So far, that hasn’t happened and time keeps ticking away. And it’s not going to wait for the perfect moment or situation.

Will We Ever Stop Worrying?

Probably not. We’re parents after all. But for parents of the disabled, the worry is with us daily. I don’t think I’ve ever been to a parent support meeting where someone didn’t cry, because sometimes the questions seem to have no answers. So all we can do is be there for one another, exchange helpful information, rely on those who can help and create as loving an environment as we can for our children. And then we can only trust that we’ve done our best.

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June 18, 2021 by clearymf 2 Comments

Disabilities – Milestones of Grief

Last week, we lost our dog. He was the cutest little thing – a Morkie rescue – although he might have been a few other breeds too because he always looked like a ragamuffin. He was one of those dogs that wouldn’t ever have won “best in show” but he was perfect.

One day he was fine and the next he had a raging cancer. A huge spreading mass grew across his abdomen and that was it. We were in total shock. For those who have lost a pet, enough said. For those whose pet was their disabled child’s best buddy, we know the sadness is even more palpable.

Grief comes in all shapes and sizes. And it’s an interesting thing about grief and disabilities. Of course, we all grieve about our child being born with so many extra challenges to face. Everything will be so hard, we think. So much will be lost to them.

But people often note that kids with disabilities appear to be very happy. Our own daughter always seems full of grace, ready to believe the best about anybody, possessing an easy laugh at simple things and an appreciation of small beauties around her.

But What About Our Grief?

So perhaps, for parents, the grief is ours. When we decide to have children, we all have wonderful dreams for them. Of course we want them to be healthy and happy – and perhaps secretly hope they’re smart in school, talented athletes, beautiful dancers, glorious singers; we may dream of scholarships to elite schools and big careers as doctors, actors, scientists and senators; we picture them in handsome wedding attire walking down the aisle while we beam at their happiness; we mentally play with our adorable grandchildren who will start the cycle of achievement and success all over again.

And we don’t just want it for them. We want it for us too. And that’s normal and OK. It’s just that special needs parents will never know many of those dreams. And so we grieve.

Our daughter was adopted from Bulgaria and she lived in an orphanage until she was three. Although we didn’t know she had disabilities when she arrived, we figured it out pretty quickly and she’s thriving as best as she can. And we’re thrilled. But here’s the kick. We have three biological sons; my husband was one of four boys. So it became clear that the only way we were getting a female into this family was to import her from another country.

The irony was that I wanted a daughter starting from baby number one. I had plans for long chats, walks together, inspirational talks on new opportunities for women, bridal dress shopping – the whole nine yards. And it didn’t happen. Is it selfish to say I grieve over that loss? Maybe. But I do.

Is This My Fault?

For those with biological children who are disabled, there is yet another torturous grief – the one that says, “What did we do wrong that produced this disability in our child? What gene or medicine or food or activity led this to happen? This must be our fault.” And no matter how much research we do or how many discussions we have with medical professionals, that extra layer of grief is always there. Is there anything we could have done to prevent this?

How do parents deal with this in the midst of what is often a nightmare day with a child who’s out of control, or needs attention 24/7 or whose behavior brings a daily call from school? Grief just brings down whatever energy you are able to summon as you wake up each day.

Some of us pray; others exercise; some find support groups; many cry. Everyone worries as if our fears are somehow protecting our children from any worse fate.

Moments of Grace

I’ve come to believe in grace. It doesn’t have anything to do with religion. It’s just a sense of love and peace that I try to summon, sometimes successfully, when I am in need. Very often, it comes in the form of kind and generous people who are willing to help and to share, or a good book in which I can hide for a while, or a silly episode of Everybody Loves Raymond that makes me laugh out loud. Sometimes, it’s one of my daughter’s small triumphs where she shows she has learned something we’ve been working on for a while or just a sudden appreciation of a garden or a great baseball play or a laughing child that’s beautiful. Whatever it is, I try to notice it and take it in. It gives me strength.

Perhaps just knowing that we all have shared grief is a grace. And maybe sharing that with our fellow travelers on this tough path is a grace too, both for those who share and those who receive.