15 Things I Don't Want to Hear as a Parent of Kids With Disabilities

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In the last nine years parenting two children with disabilities, I’ve heard my fair share of unsolicited parenting advice and, although well-meaning, ignorant comments. Some comments I can brush off easily; for others, I have come up with answers. Some make me practice my self-control and being kind even when I feel like screaming, “Are you serious?”

Some comments come from strangers and I like to take their initiative as an opportunity to educate. I am a parent who does not mind questions and I am glad to help people understand disability. But that is my choice as a parent. One of my daughters has recently asked me to either ignore those people and walk away, or tell them their questions are rude. She is 11 years old and has cerebral palsy, and we are getting to the age where I need to let her lead the way.

For example, when people ask me in front of her, “What’s wrong with her?” She no longer wants me to say, “There is nothing wrong with her, she has cerebral palsy,” followed by an explanation of what cerebral palsy is. We have reached an agreement, and when people ask this, I turn to her in alarm and say, “What’s wrong? Sweetheart, are you OK? Are you OK? What is happening?” Then I turn to the person who asked and say, “What’s wrong with her, what do you see?” Invariably, the person who asked either recognizes their question was inappropriate and apologizes, or they fumble with their words trying to explain they meant, “Why is she in a wheelchair?” To which my daughter has asked me to say, “You are asking for private medical information.”

The most hurtful comments, for me, usually come from family or close friends. Those comments often feel like criticism on my parenting or they invalidate our experiences, like “You let her spend too much time on the iPad, that’s probably part of the problem,” or “All kids do that, stop worrying.”

And although I do believe most people are not trying to be mean (some might be trying to be supportive) when you hear these comments over and over, it begins to feel demoralizing.

We reached out to our Mighty parents and asked, “What are things you don’t want to hear as a parent of a child with a disability?” Their responses reflected the fact that many of us are recipients of the same attitudes toward disability, and perhaps we are a little tired of hearing these things.

1. “God gives special children to special parents.”

We know we are not special; we are ordinary people. Taking care of your child and doing whatever is necessary to help them is not what “special” people do, it is what parents do.

Although opposite of this sentiment, one parent shared the other side of “spiritualizing” disability when she was told, “You are cursed by the sins of your ancestors.”

2. “But she looks normal!”

Some disabilities are invisible. This comment suggests doctors who diagnose the child are incompetent and the parents are misinformed. Just because you cannot see a disability doesn’t mean it is not there.

One mom said she was asked, “Are you sure about his diagnosis? You should ask for a second opinion.”

3. “That child just needs discipline!”

This is perhaps one of the most hurtful comments, as it implies behavior is a result of poor parenting. It’s saying, “You are a bad parent,” when in reality most parents of children with behaviors are spending hours and hours in therapy and interventions trying to help their children cope with their surroundings and sensory input.

Parents in our community have been told, “I would spank it out of them, my kids would never do that.” “That’s your karma.” “You have not stepped up enough as a parent, that’s why your son has so many issues.” “Can’t you control that child?” “If I had your kids for a week they wouldn’t behave like that anymore.”

4. “I’m sorry.”

Said with good intentions, but it suggests disability is bad. It also suggests we got the “short end of the stick,” or a “less than” child. Our children with disabilities are children first. They are loved, cherished and invaluable. This comment shows pity, which reflects a disability attitude that unfortunately is the most common in our society. We are not sorry. We love our kids. Instead, help us celebrate them!

5. “He is taking too many medications, that is why he has problems.” 

Here is the thing: if a child is taking medications, it is because they need them. That’s all there is to know and all that matters. Personal opinions can be kept private as they are not constructive. A parent should not have to justify why their child is taking medications. It was most likely a long process and something they took time to process and understand. The decision was not made lightly and it was made with the child’s best interest in mind.

One parent shared, “[Someone suggested] I should stop giving her insulin and read about natural things that could help her. There is no replacement for insulin but insulin! Your body needs it or you die. Cucumber water and Chinese herbs aren’t going to help her. Or, maybe she should watch what she eats, what did she eat when she was first diagnosed with diabetes and how much did she weigh? Type one diabetes is not type two diabetes. Research, research, research!”

6. “She’ll grow out of it.”

When my daughter was born with Down syndrome, we even heard this one. Really? Her condition is genetic, as are several other disabilities. People don’t “grow out” of their disability, regardless of what it is. Disability is not a cold to get over with chicken noodle soup and rest. Children with autism become adults with autism.

A mom shared, “Home nursing agency [said] she’s an insurance liability, but gladly call back if she snaps out of it.”

 

7. “I could never do it.”

Do you love your children? Then yes, yes you could. It’s really that simple. Some of us hear it so often that it starts to sound as if our children were unlovable. Our children are as lovable as any other child. It also suggests only “special people” can love them, and we already covered that one: ordinary people love their kids.

8. “Have you considered sending him to a group home?”

Just a generation ago, people with disabilities were sent to institutions and were shut out from the world. This comment is a remnant of those attitudes towards people with disabilities. While there might be situations where this is necessary, assuming parents don’t want to keep their children shows how little our society values people with disabilities. We love our kids, we want them home, we just need support so we can help them.

A parent shared, “[A] behavior specialist told us to consider sending her away [and it would be a] vacation for myself and our family.”

9. “Have you tried giving _______?”

Many of us have heard that, “my friend’s cousin’s neighbor had a child with the same condition and they tried this herb and now they are ‘cured.'” Trust me, if it is a possibility, we have probably heard about it and might have even tried it. We spend hours and hours doing research online — if we need advice, we will ask for it.

10. “Didn’t you know before birth?”

First, this is a personal question. Second, it suggests had we known about our child’s condition we would have chosen to terminate the pregnancy. Worse, it suggests the person asking would never love or want a child like ours. It is offensive. And if we didn’t know, does it mean we had “bad luck” and are now “stuck” with our kids? My children are a gift and a joy. I love them more than life and disability doesn’t change that one bit. My children are wanted.

11. “It could be worse, at least she can walk.”

This diminishes our struggles. Just because someone has more challenges doesn’t mean ours are not valid.

12. “He’ll eat when he is hungry.”

Sure, this works for some kids, but not for all! Kids who have sensory issues may not eat when they are hungry, so we do what we have to do to keep them healthy and alive.

A parent shared this comment made to her: “Just give her some ice cream, she will eat or she will eat if she gets hungry.” This regarding her 100 percent tube-fed daughter. Mom said, “You seriously think I haven’t tried ice cream? Oh, and no, she will starve to death. She doesn’t feel hunger.”

13. “My kid does it, too.”

Another comment diminishing our experiences and invalidating our fears. Even if your kid does it, too, it is not the same.

14. “God only gives us what we can handle.”

If we are going to dish out “spiritual advice,” we should at least make sure it is accurate. Without getting into theology here, this is not true — the sentiment has been taken out of context from a verse in the Bible talking about temptation. As one mom shared, “Sometimes I feel like I just can’t handle it.” I’ve been there, too.

15. “Stop using the ‘autism’ card for sympathy.”

Our child’s disability is not a “card” we play. It means we have to consider our children — disability included — in our planning, outings, gatherings and all aspects of our everyday lives. We do not want sympathy, we want compassion and understanding.

Do you parent kids with disabilities? What comments have you heard? Share with us in the comment section.

Thinkstock image by g-stockstudio

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The Emotional Resilience I Need as a Parent of a Child With a Disability

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I’ve been thinking a lot lately about my own emotional resilience. It is a constant work in progress for me personally.

We all get our strength from different places and there are times when we might feel nowhere close to resilient. Totally floored, out of energy and unable to cope.

Working out how I’ve built, and continue to build my resilience (which wavers regularly, I’m no super human I can tell you), has made me look at all areas of my life.

Nature and nurture definitely have something to do with how we cope in life. There are some studies that show children are genetically predisposed to being more or less resilient. I don’t know if I have that gene or not, but I do know I’m fortunate to come from a very loving family with parents who gave me many great tools along with the love and support I needed to go off into the world. Having my own children now, has shown me how vital they were to my life experiences, and how determined I am to give the same strength to my children. For me, this is especially important for my son, Freddie, who will face adversity all of his life, and for his siblings who will need to be resilient to cope with possible bullying, emotional needs and worries as they grow. I want them all to have happiness.

Life isn’t one big party though, is it? I put a lot of effort and energy into doing lots of very “normal” things, like seeing friends and family, booking the odd holiday, watching trash on TV and reading when I can. My diary is always jam packed. I was very clear from the start I didn’t want disability, Freddie’s disabilities, to define me or to define us as a family. Some days the image of who I was is hazy, but I’m still in there. We all are.

Ask yourself, what do you enjoy doing and what did you enjoy doing?

Disability is part of us but it isn’t everything we are.

It was while thinking about not allowing disability to define me that it suddenly dawned on me (I know this seems strange it hadn’t occurred to me earlier) that I have always lived with disability. My beloved Dad (who died in 2009 from Cancer) caught Polio when he was 5 years old. He had many years of struggle to get well, with all the love and support from my Grandma and Poppa, but it left him without the use of his left arm and muscle weakness in his legs. The reason it didn’t really occur to me is because he was never disabled to me. He was my Dad. He drove, did clay pigeon shooting, played golf, rode a bike, had a fantastic job and tons of friends. He lived life. He taught me to swim, ride a bike, he mentored me in my working life and was a loving Dad. His example of not letting it define him became a part of me. All without me knowing it.

When I was little, my Mum used to give me strategies to deal with the unwanted stares he would receive on holiday around the pool and the stupid comments and questions I might get from classmates and friends. One of the best was, “So, how does your Dad eat food?” Um, well, with a fork like everyone else! When strangers stared, I would smile and wave at them. I can remember doing this as young as 7 years old. It worked. They were on the back foot.

These experiences are ingrained in me and contribute to who I am today.

My other enormous support system is my hubby, Ollie. He has been with me through the absolute best and absolute worst times in my life. The fact we are celebrating 10 years of marriage this year and 16 years together is testament to how fantastic he is. We could so easily have lost it.

I watched my Dad die from cancer. I saw him take his last breath. It’s hard just typing those words, even now. When I think how I crumbled, literally to the floor, Ollie was there. That term people use so loosely these days, “I was heartbroken” over loosing a ring, crashing the car or missing a holiday became a reality for me. That pain is your heart breaking into a million pieces. The pain is like nothing else. I recovered over time and got through it with the support of Ollie, my Mum, family and good friends. I will never get over losing him and every anniversary is awful, but I can go day to day now.

Then I got pregnant (all planned, but still) thinking this would be a turning point. Something positive to focus on and put our energy into. Well, we were right but not for the reasons we thought. At my 20-week scan, we found out Freddie’s brain wasn’t developing correctly. No one, not even after all the horrendous tests we had, could tell us what this would mean for our baby or what the prognosis would be. I honestly thought I had experienced the worst thing I could and uncertainty and great sadness settled in again. I’m not totally sure how Ollie and I made it through, really. He told me a couple of years ago it was so bad in the early days after Freddie was born he thought we would be divorced before long. I wasn’t aware. I wasn’t in this world. I was totally lost for while there. We have worked extremely hard on our marriage.

 

We have no real control over how our children develop. Often, especially when your child has no definitive diagnosis for their disabilities, you often have no prognosis either. I have no control over how Freddie develops. I do everything I can, but I still don’t know. This is one of the things that can make me feel frightened. This became apparent when, as we were jogging along and he was making steady progress and I thought nothing could change now except moving in a positive direction, he started having absence seizures. Getting the call from his teacher and listening to her concerns, I fell apart all over again. I dusted myself down and started to use the emotional resilience I had built over time and started to work on it more.

Resilience is ever evolving. Part of the reason for this is the ebb and flow of life. Nothing stays totally the same forever, even when on the surface it seems like it does.

When you find out your child has a disability, the acute grief can be overwhelming. Just like it was when my dad died. Thats how I knew I was grieving. I had felt that pain before. Acceptance was next.

I built myself up with a support network, self-belief and self-study so I could have a strong emotional resilience, but it needs constant work. I read a lot of books around this subject and one I read recently which I would recommend is, “Option B” by Sheryl Sandberg. Although the author is focussing on her resilience after her husband dies suddenly, leaving her a widow with two small children, the themes were totally applicable to life with a disabled child. After all, you do experience grief in this situation, too. Not just at the beginning, but at different points throughout, like a wave crashing into the shaw and back again.

“You are not born with a fixed amount of resilience. Like a muscle, you can build it up, draw on it when you need it. In that process you will figure out who you really are — and you just might become the very best version of yourself.”  — Sheryl Sandberg, “Option B”

One of the best things to happen was that I found SWAN UK. As a member, I found so much support and I could ask anything at any time of day. It had such an incredible impact on me, I took on the role of Parent Representative for my area. Online support groups can provide a different dimension to your support network. This can be especially important if you are caring alone or don’t have any family to help out.

I used to have a desperate deadline of getting Freddie walking and talking by age 5. You are always told the brain is most plastic during these formative years. The grief came over me again when he couldn’t say anything other than “Hiya.” I was, however, ecstatic he was able to walk with his kaywalker and he was no longer the only child in his class still crawling.

My timelines had to change.

Perseverance is key to building resilience.

I also learned a lot more about Neuro-Plasticity. Yes, the majority of change happens at a young age, but the brain continues to build new pathways all of your life. We still have time. He is proving that every day.

When talking about emotional resilience, you often come across the three Ps: personalization, pervasiveness and permanence.

These 3 Ps are areas I work on, building my resilience as I go.

Personalization

I always felt guilty. I was convinced that Freddie’s disabilities were my fault, even when we received his diagnosis. It has taken me a long time of removing the guilt around this. Feeling something is your fault is different to taking responsibility for your actions though. Don’t confuse the two. Taking responsibility is key to change and growth. Feeling guilt and assuming fault prevents forward movement and acceptance.

Pervasiveness

This is a state of feeling/thinking that this one event will spread to every area of your life. This is the area I had to, and still have to work on, not to let Freddie’s disabilities totally define my life or that of my family. Don’t loose yourself.

Permanence

Believing that one situation, one event, one state is forever is mentally debilitating. As a race, we are built to be constantly moving forward. In the early days I used to sob and say, “This is it now, the life of a carer. What if he can never do anything for himself. What if he never walks or talks etc. I will be like this forever.” It is true Freddie will be disabled all his life, but there are still changes. Change is key to the reason we need to practice building our emotional resilience as we go.

Follow this journey at Aimee Mann Mentoring

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My Daughter Needs Medicaid, We Are Holding Our Breath

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She sleeps without a care in a world. In an hour, she will get up, test her pee, take her pills and start bugging me to go swim. My 8-year-old daughter had a kidney transplant almost three years ago. Her responsibilities for now include drinking enough water and helping Daddy put her pills in the case. In just nine more years, she’ll be in charge of managing her own healthcare and that terrifies me. I’m awake at 7 am, drinking coffee, reading the paper and watching the news — waiting to see what’s going to happen with the healthcare bill — and hoping she never has to sit and watch the news to find out her financial future.

The year before Lexi was born, we lived in this crap hole apartment with a neighbor who always asked for a ride to West End to, “get his mother’s medicine.” There is not a single pharmacy in this part of town. He did a lot of crack and I wouldn’t let him in my car. I lost my job because I didn’t have health care to get a doctor’s note for being sick. We went on food stamps and I went to 100 interviews but no one would hire me and my belly. I couldn’t even get a minimum wage job at Dairy Queen.

We worked our butts off over the years to climb out of it. I finally got a job a month after my second daughter was born and we moved before I had our youngest, the transplant kiddo. Not having enough money for groceries is a position I never want to be in ever again, and if we’d had health insurance we never would have ended up there.

When Lexi had her transplant, we paid a $950 copay for her first month’s medications and then she finally got approved for Medicaid in addition to our regular insurance. I wish I was exaggerating when I say it has saved us over a million dollars. We meet our deductible by February every year. Losing Lexi’s Medicaid would be quite the hit.

But I have to sit and watch a group of privileged Americans decide my family’s financial future. We will not go back to poverty. I wish we had decision makers who had actually experienced something in life that the regular American does. They have no right to be making such thoughtless decisions for my sleeping 8-year-old’s preexisting condition.

Beautiful girl, I hope you never have to worry about how you will pay for the medications that keep you alive.

Don’t cut Medicaid.

Is this the “American Dream” we worked so hard for?

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Dear Teachers, Here's How You Can Help My Kid Avoid or Cope With Meltdowns

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I don’t know about you, but there have been times when my kids work so hard at “keeping it together” at school, that by the time they come home they are not feeling regulated.

Also, home is safe, and home is where you can finally show what you are feeling inside.

A loud noise can tip off the scale. A snack might have the “wrong” texture for an already tired body.

For my daughter with Down syndrome, we were fortunate to work with educators who were willing to listen to her sensory needs. My daughter had a card with the word “break” spelled on it. If she needed a break, she would hand the card to her teacher, who would then take her to a different room where she could get regulated. Sometimes she used a therapy swing. Sometimes she chose to wear a pair of noise-canceling headphones. Sometimes she just walked the hallways for a little while.

I believe most teachers want to help our children be successful at school, and success means helping our children feel regulated.

We reached out to our Mighty parenting community and asked, “What can teachers do to help your child and prevent a meltdown?” We also asked our autistic community, “How can/did your teachers help you handle sensory overload and/or meltdowns?”

If you’re an educator, we hope these answers help you further support your kids. If you’re a parent or a student struggling with teachers understanding sensory needs, maybe they’ll be receptive to these ideas.

Here’s our community: 

“The best thing a teacher can do for my autistic child is to be patient, understanding and observant. Be on the lookout for clues that my son is becoming overwhelmed before he actually gets there. This will usually present itself in the form of increased or more intense stimming. Once you recognize he is feeling uneasy, do something to help. Offer him a break to move around or to go to a quiet place.” — Sarah B.

“Explain fire drills before they happen and have headphones (if appropriate) in an easy to access location near the exit. Many teachers enjoy decorating classrooms with bright colors and posters. This can be overwhelming to students in a new environment. Choosing neutral colors and slowly adding to the classroom environment can prove beneficial to those who experience visual sensory overload. Provide movement breaks in the beginning — sitting for long periods of time can be tough for kids at any time, let alone in the beginning of the year. Most important, invest time in the beginning of the year by truly getting to know your students — know their interests, their fears. This will help in more ways than could ever be listed. Many issues can be solved before they occur by knowing your students and building on their interests and strengths.” — Megan G.

“Get to know each of your students on an individual basis, and communication with the parent is vital to maintain an environment that each student can thrive in. Watch for key signs of over-stimulation before a meltdown and have a plan to redirect to a quite place or have items ready for relaxing and de-stemming. Have a visual schedule and keep a very structured classroom. Don’t keep changing things. Keep the room walls simple with lots of visual prompts. Most important: read and re-read the IEP and stay on the same page with open communication with all the teacher aids in your classroom. Make a structured schedule for each student based off their IEP. Lastly, have a questionnaire for your parents, send an email or meet with parents before school starts to find out more about your student. Also, find out the expectations of your parents for their child to help the school year go smoother for everyone.” — Danielle W.

 

“Most of the time my son’s meltdowns are triggered by conflict with other students or noisy, chaotic environments. He can misinterpret tone of voice, social cues, body language, intent. The best thing a teacher can do is to closely supervise and monitor, not only the classroom, but unstructured or transitional times as well.” — Mary M

“It’s important for teachers to remember that school is a new environment and new experience altogether, and coping strategies the child uses at home might fly out the window at school. It will take some time to adjust, and get to know the child’s personality, before you will get a sense of triggers and warning signs. Meeting with the parents beforehand is one of the best things you can do. They can give you a basic set of warning signs. Unfortunately you might have to learn the hard way, meltdowns will inevitably happen early in the year. My best advice for preventing or dealing with a meltdown is to scale back. Whatever the situation, scale back and remove the pressure. We are selective about what classroom rules to enforce at the beginning. For example, he doesn’t have to stay in his seat if that’s the current problem, but he does have to stay in the room, that’s nonnegotiable. Give them some agency, some sense they get to make their own choices, and within a few weeks they will adapt. This opens the door to better learning opportunities as they begin to focus on the schoolwork and move past adjusting to the new room. But it takes some time, and patience, especially in the early years of school.” — Jessica W.

“Last year the classroom teacher met with us before school, before back-to-school night. She answered all of my child’s questions — one hour worth of questions. I could see the anxiety and fear leaving her body. It was the best start we have had in four years.” — Jessica M.

“My 11-year-old says, ‘watch, listen and understand.’ Watch for bullies, environments getting too noisy and lots of fidgeting. Understand that some days will be better than others and that the teachers can help make things easier by being calm, offering quiet space and setting the tone for no tolerance of bullying.” — Dee N.

“Read the IEP or 504. I know teachers have many, many students and many, many things to do and keep track of but when accommodations are there, it is for a reason. That reason is to hopefully help everyone have a successful year, student and teacher. If the child hates being touched and hates having attention centered on him, please please please don’t touch him and constantly call out his name in front of the class.” — Melissa B.

“When I was in school the best thing teachers have done for me is notice when I might be feeling overwhelmed and ask if I need some time to myself.” — Jessica C.

“Have a box with different items such as stress balls, sensory balls, emotion cards and other things that can help autistic children calm down.” — Hannah H.

“Let him know being overwhelmed or frustrated is OK.” — Sarah C.

What would you add? Let us know in the comments.

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My Life as a Parent of a Child With a Disability Is Like the Movie, 'The Matrix'

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I often wonder to myself if others are wondering what my life is like. When I’m at the grocery store and observe a concerned stare at my son’s abnormal breathing pattern, or when people innocently inquire about his age and their face betrays them with a hint confusion as to why he isn’t running the halls. Some make assumptions, dance around the giant elephant that is our life. At times, others with kind caution mutter phrases such as, “I just don’t understand how you do it” or “I don’t think I could be strong enough.” And every so often, people forthrightly ask me what it is like to be the parent of a child with a disability.

I’ve heard people liken this life to an unanticipated trip to a different country than a family had originally planned to visit. It is still a beautiful journey, but not what had been anticipated by any means. I empathize with this metaphor. But for me, where it falls short is that for parents of a child with disabilities, the trip doesn’t merely end with life returning to normalcy back home. It is a life-long venture into an entirely different reality — a reality that has always existed to the general public, but more often than not, goes unnoticed.

For lack of a better metaphor, life for me is more like the movie “The Matrix.” I have swallowed the red pill and cannot go back. The veil has been lifted, the wardrobe door opened. A new world just below the thinly cloaked surface of reality has been revealed to me. I simply see the same world differently now.

 

My world now consists of doctors and therapists, of celebrating the little things and asking myself strange questions such as, “Will my child ever walk, talk, or take care of his personal needs? Will he live to be an adult?” This is my world now.

So when I’m asked what it is like to be the mother of a child with a disability, it is never a simple answer for me because it is a life rife with paradoxes. It is both beauty and pain, fear and white-knuckled-clinching to a faith I fight to maintain; it is trusting and believing when I cannot see, and constantly relying on peace when circumstances demand there should be none. It is abiding as “abnormal” in a sea of “normal” surroundings, and wading in the occasional loneliness that accompanies a life marked by limitations. It is a venture no one expects to take and one in which there is no adequate preparation.

It is, however, worth both, the joyful and painful effort of journeying through. I see the value of life in this unveiled world in my son’s full-body smile, framed by the sole dimple on the right side of his face. In how he relies on me, and even though he cannot and may not ever verbally communicate it, how I know he trusts me. I see value in how it daily humbles me to serve him when he’s screaming, and in the pointed moment each night of realizing how little control I actually have as I strap on his monitor belt to assure he’s breathing. I see value in how his life daily impacts others and how he has taught me what it means to sacrificially love with every part of my being when no one is around to give me recognition for doing so.

Yes, there are no adequate words to describe the life of a parent of a child with disabilities apart from this: I genuinely love being his mother.

His life is an overflow of beauty, purpose and infinite value. Being his mother has been the greatest and most refining gift. And I know that come what may, in this new world I now find myself in, this is truth.

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4 Tips to Gain the Maximum Educational Benefit for Children With Disabilities

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Recently, my wife and I were invited to speak at a “Family Retreat Weekend” in Austin, Texas, sponsored by the Texas School for the Deaf (TSD). Specifically, we were asked to speak to parents about our experiences as the parents of a deaf child who has additional needs. We titled our discussion, “The Importance of Parent Involvement in Your (Deaf) Child’s Education.”

While our talk catered to parents of deaf children, the main point applies to any parent: you must be involved in your child’s education in order for him/her to have the greatest chance of success.

We started out by talking about all of our children. My oldest child is deaf and has cerebral palsy. In addition, three years ago, we adopted two additional children who developmentally were behind their peers. Despite their various challenges, we explained we expect all of our children to do their best and we demand the same from ourselves as parents as well as their schools to help them achieve their highest potential. Our talk centered around four key recommendations that we used to gain the maximum educational benefit for our children.

1) Seek wisdom.

Soon after our oldest daughter’s diagnosis, we were told of certain benefits we were entitled to under the Americans with Disabilities Act (ADA) as well as the Individuals with Disabilities Education Act (IDEA). Since we didn’t know anyone who had a child with similar circumstances, we were unfamiliar with our rights under the law. When she started school, we were introduced to a totally new concept (well, new to us) called the Individual Education Plan (IEP), and we felt lost. We didn’t know what the school was responsible for nor did we know the questions to ask. We were fortunate enough to connect with schools, other parents, state legislators and medical benefits coordinators who were kind enough to explain the purpose of the IEP as well as other avenues of support that were available to us. By doing a little research, we became better advocates for our child.

 

2) Expect the best.

When it comes to education, it is important that all three elements (parents, the school and the child) work together to achieve success in the classroom. We constantly tell our children they can achieve anything they want in life as long as they are willing to work for it, but the foundation for achieving greatness starts with a good education. We ensure our children go to school and are prepared for class. We expect our children to do their best, and we expect the school to give their best effort and to provide available resources at their disposal to help our children maximize their potential.

3) Communicate.

We emphasized the importance of communication. We are in constant contact with all of our children’s schools regarding their progress. We not only monitor their assignments and grades, but also their overall learning environment. We are not “Helicopter Parents” (where we are always hovering over our kids) but we do monitor their activities and are ready to step in if things start to go astray. We also take the time to talk with each child to find out directly from them what is going on in their lives. This may seem like something that would be fairly obvious, but based on the feedback we received, these things are not always obvious. Also, as hearing parents of a deaf child, it is critical to communicate directly with your child. Taking the time to learn sign language has done wonders for our relationship with our oldest child. We are not experts in American Sign Language (ASL) but as a family, we can communicate ,and that is all that matters.

4) Show up.

Every school year we make appointments to meet all of our children’s teachers. By establishing that relationship up front at the beginning of each year, the teachers know we are actively involved in our children’s education. In addition, we also work on special committees and support funding requests (unlike most school districts, TSD is allocated funding through the Texas State Legislature as part of the state budgeting process) to make the school even more successful. By doing this, each school understands we are making every effort to help the school and our children, so they are more than willing to make an extra effort to help our children maximize their potential. In the end, the winners are our children ,and that is really what matters.

Our discussion was all about sharing our experiences in order for parents to become better advocates for their children. We shared the benefits not only from our perspective, but from our children’s as well. Our oldest daughter is preparing for her senior year in high school and is looking forward to attending college. Our two younger children are preparing for another year of middle school and we can see they are capable of achieving great things as well. As a parent, I can receive no greater satisfaction than that.

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