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4 things parents of kids with special needs wish you wouldn’t say
By Mari-Jane Williams
My son has an autism spectrum disorder. He doesn’t wear a sign on his back indicating as much, and we don’t generally mention it. Not because we’re trying to hide it, but because there are so many other interesting things about him that come to mind first: He loves “Star Wars” and “Diary of a Wimpy Kid.” He’s wicked good at science and can remember crazy details about books we read when he was a toddler. He’s also really funny and delights in bathroom humor. And, my goodness, the boy can dance.
In other words, he’s a 10-year-old boy.
Sometimes, though, someone will ask why he plays in a different soccer league than his sister, or has a slightly different homework assignment than the other kids in his Cub Scout den, or doesn’t always answer people right away. (He’s not being rude, it just takes him a little longer to figure out what he wants to say).
It’s a matter-of-fact “Well, he has autism,” and then we move on. It’s no big deal to us, it’s just who he is and has always been. The people on the other end of the conversation, though, always seem to be left fumbling for words. I get that. To me it’s not much different than saying “Well, he has blue eyes,” but that’s not how people take it. They feel like they need to say something. So with the very best intentions, they often end up saying exactly the wrong thing.
I’m sharing the four things I least like to hear. Not because I’m not appreciative of the incredibly kind thoughts that are behind them, but because I think people honestly don’t know what to say to parents of kids with special needs.
“I’m sorry.” For what? I have a great, healthy kid. He’s smart and funny and totally honest — all the time. He is the most sincere person I’ve ever met, and he does tons of nice things for me every day, just because. Please don’t feel sorry for me or for him. He’s not broken or less than. He’s just different (thanks for those words, Temple Grandin). Those differences have changed my life and my perspective on the world, forever and mostly for the better. No apologies needed.
“Wow, you’d never know it to look at him!” Right, well, like I said, there’s no sign on his back. I think people mean this to sound comforting: “He looks just like a normal kid!” But I already know that. He looks just like every other boy his age, which is why people don’t understand when his behavior doesn’t match his size. Pointing out the obvious almost makes it sound like it’s astonishing that a kid who looks like every other child could possibly have a disability. Autism affects 1 in 68 children according to the most recent numbers for the Centers for Disease Control and Prevention. There are thousands of people out there with “invisible” disabilities. So it’s not surprising at all.
“All kids do that/struggle with that.” Well, yes and no. Many of the things my son struggles with are problematic for other kids at some point, sure. But it’s not the same. For us, the struggles are prolonged, and often more difficult. Sometimes it feels like you have to slide backwards a few inches before you can creep ahead a few more. Sometimes it feels like nothing is easy, ever. The up side? The victories take my breath away. Something as simple as the first time my toddler climbed on a swing and said, “Push me!” is enough to leave me in tears. That makes everything worthwhile.
“I don’t know how you do it.” Mostly, this refers to hauling him to therapy or fighting with insurance companies or advocating for him at school. Essentially, having his back and making sure he has everything he needs to succeed. That’s not any different than what any parent does for their child, special needs or not. You don’t think about it, you just figure out what you need to do, and then you do it. On the flip side, moms of kids with special needs aren’t saints or angels, either. Our kids can be frustrating and annoying and drive us up the wall, just like other kids.
A Toolkit for Parents of Special Needs Children
by KERA WASHBURN
Every parent wishes they had a handbook to guide them through the journey of raising children. But somehow, through trial and error and a lot of prayer, we make our way, raising our kids the best way we know how. However, when you have a child with special needs, that handbook would come in even more handy. As a parent of three children, each with their own set of challenges, I wanted to share some “tools” that have helped me so far in my mothering.
Courage Without a doubt the first emotion that you feel when your child is diagnosed is FEAR. You fear what the future holds for your child. You fear your ability to care for your child now that things will not be easy. You fear what you don’t understand. But fear does not allow you to help your child. Your child was not given to you by chance; you have within you the capability to be a wonderful parent to that child. You just need to push those fears aside and go forward with courage.
Knowledge Once you are ready to face the challenge ahead, just like anything difficult in life, you need to gather knowledge and understanding. Call every doctor you can think of, seek out therapies, read books and good medical websites dealing with your child’s condition. Learn as much as you can. Find all available resources in your area. Find a support group. The more knowledge you gain, the more you can help your child.
Acceptance A diagnosis is a hard pill to swallow. I know this well, having three children diagnosed with different challenges. You start to see the diagnosis more than your own child. This can be detrimental to your own happiness as a parent. You must see your child for who they really are, and realize that the diagnosis is a part of them and makes them unique and special. Don’t be afraid of what your child does or doesn’t do; accept it and love your child no matter what.
Determination> This one is crucial, because no matter how many doctors you have on your side, no matter how many people are supporting you, in the end, the one person who will do more for your child than anyone else is you! You are your child’s biggest advocate. Don’t let anything stop you from getting help for your child, from getting answers that you need. Don’t ever give up.
Patience Having special needs children means things will be hard. There’s no way around that. You will be dealing with behaviors, delays in development, lots of doctor visits, long nights, unanswered questions; the list goes on and on. You have to be willing to wait for results, for answered calls, and for answered prayers, too. Progress will never happen overnight, so have patience and keep doing the right things for your child, even if it seems like nothing is improving.
Endurance Life is all about enduring to the end. Special needs children must learn to endure with the specific challenges they have been given. Some might be temporary, and some last a lifetime. Our job as parents is to help them learn to endure in this life and give them the knowledge and tools necessary to do so. At the same time, we must learn to endure as they face these challenges. It can be exhausting, but as long as we know we are doing all we can, we can endure.
Hope There are going to be dark days, days where you feel all alone, where you feel like you just can’t go on as a parent, where you cry yourself to sleep, worrying about your child’s future and well-being. These days are inevitable, but they are only days. Do whatever you can to keep the spark of hope alive in yourself as a parent. Remember, this child was given to you for a specific purpose, so you are capable of being a wonderful parent. Hope will sustain you during those dark days.
Joy Even amidst those dark days, there can be moments of joy. Joy in seeing your child achieve a new skill that took months, even years to accomplish. Joy in hearing your child speak for the first time. Joy in getting the help you have been seeking from a specific doctor or teacher. Take joy in progress, big or small. These moments are what keep our hope alive, what keep us going every day. Don’t let yourself get weighed down by the burdens and worries you feel. Pay more attention to the joyful moments.
Love. We all love our children dearly. No matter what challenges our child may have in this life, we can love them just the same. Show your child you love them by giving more of your time. Play with them, laugh with them, be with them. Don’t allow your child’s disabilities to rob you of the love you feel; love is eternal. Say “I love you” every day.
No matter what your child’s challenges are, face them. Accept them. Fight for them. Find joy in them. And above all, love them. No one can do this but you. Don’t ever shut your toolbox. Use these tools–and others that you have been given– and trust in your abilities as a parent.
What I Wish I Could Tell Every Parent of a “Normal” Child
The most pervasive stereotype about people with disabilities is the belief that their lives are so different from an “ordinary” person’s.
Individuals with special needs are every bit as ordinary as you or me, and we need to remember that in spite of their challenges, they are people first, just like everybody else.
I am the mother of two children with Down syndrome, and strangers frequently ask me how I want my kids to be treated. While I appreciate the honest concern and understand that some people don’t have any experience around kids with special needs, my response is always the same:
I want my kids to be treated as if they are no different than any other child.
Because they’re not.
In a world of diversity, we’re all different. As a parent, it’s my job to raise responsible, accountable Citizen Kids – just like any other mom or dad. It makes no difference that my Citizen Kids have special needs.
But as they say, it takes a village to raise a Citizen Kid, and part of my job is making sure all parents have the information they need to understand that disability is just a natural part of life.
Here are a few ideas I would like to share with parents everywhere:
1. Look the child in the eye.
Too often, we assume that a disability defines a person. As a result, people tend to direct any questions or conversation to the parent instead of simply asking the child himself. Would you do the same if the child didn’t have an obvious disability? Most likely not. Now, I’m not saying that every child with a disability has the ability to engage in a typical conversation, but regardless, please don’t ignore them or act like they don’t exist.
Living in an inclusive world means that every human being gets the chance to try his or her best, to utilize their individual abilities in order to feel like part of the community.
Imagine what my kids learn when you give them the opportunity to engage. They feel respected and included, and they learn to have faith in themselves – a skill that’s only achieved when they are treated as individuals with no labels.
2. Please, no pity.
Living with a disability isn’t always easy, but it’s also not a life-shattering hardship. There’s a common misconception that people with special needs are always dependent on others, which can be a heavy burden. But having children or a loved one with a disability isn’t the end of the world for anyone. It’s merely a circumstance, like anything else. One that is highly impacted by personal attitude, self-esteem, and opportunities that people receive in order to succeed.
People with a disability don’t need pity or shame. Instead, they need their rights to be respected, accommodations to be fulfilled, but most of all, they need to be surrounded by open-minded people who celebrate their unique abilities instead of pointing out their disabilities.
3. Don’t assume their behavior is tied to their disability.
Have you ever seen a child with special needs throw a temper tantrum? It’s nothing different from any other child having a meltdown, yet it’s not uncommon to get uncomfortable looks from bystanders.
Although some diagnoses do carry a higher risk of behavior problems or sensory issues, please be aware that many times, kids are just being kids, and their reactions, tantrums, or behaviors aren’t necessarily related to an underlying issue.
If you are an educator, a professional, or just a concerned citizen, remember that there’s no single foolproof way to handle a child in the midst of a meltdown, regardless of whether you’re dealing with kids who have special needs.
Instead of pigeonholing their behavior, take the opportunity to get to know them as individuals. It will help you learn to redirect, refocus, and reframe challenging situations – the same as you would with any child.
My thoughts don’t necessarily represent those of every parent or human being with a disability, but that’s just another example of how different we all are.
Simply by reading this article, you are making a positive difference in the lives of many families who feel represented by these words. We are all “normal” and we all deserve to be treated with respect.
The best thing you can do for any person, regardless of their abilities, is give them a chance to let their voice be heard and give them a say in how they want to be treated.
Travel Tips For Kids With Sensory Sensitivities
Traveling with school-aged children can be stressful for any family. Add extra needs like sensory sensitivities often associated with ADHD and Asperger Syndrome, and travel gets even tougher. Attempting to coordinate a child’s sensory, dietary, and energy needs while traveling can make any vacation or holiday seem like a full time job. At Brain Balance Achievement Centers, we want all kids, particularly those with sensory issues, to enjoy stress-free travel. Use the following travel tips to help make traveling with kids who have neuro-behavioral disorders less stressful:
Choose Travel Times Wisely
If your child has ADHD, you’ll want to schedule your travel around his or her most high energy times. For example, leave later in the morning after he or she has had a healthy dose of exercise or plan your travel time during your child’s typical downtime if possible. For a child with Asperger Syndrome and sensory processing disorder, you’ll want to schedule your travel times when airports or freeways are least crowded since too many people and too much noise can cause meltdowns. Take your child’s specific struggles into account and schedule accordingly. If your child craves structure and routine, break down the trip into increments your child can understand. For example, if you’ll be traveling by plane, make a four step schedule that includes items like 1. check into airport, 2. enjoy flight, 3. pick up luggage, 4. drive to destination, etc. Let your child mark off each item as you complete it so he or she will know what to expect next.
Dress For Success
Stay ahead of sensory meltdowns and discomfort by dressing your child in soft, comfortable clothes when you travel. Be sure to bring along sunglasses and ear plugs for those with hypersensitivities to their surroundings. If your child has problems communicating or tends to wander, make sure he or she is wearing an ID bracelet or identification sticker that includes medical information and your mobile phone number.
Bring Activities And Snacks
Plan ahead so boredom and hunger won’t be part of your child’s travel experience. Bring along some small travel games, books, and art supplies that don’t require batteries. While electronic activities can be great, they can also lead to meltdowns if they fail to work properly or if the battery runs low. When possible, bring healthy protein-packed snacks and water when you travel so your child stays full and satisfied. Avoid high sugar food and drinks that can cause a sugar high and the inevitable sugar crash.
Whether you’ll be staying at a hotel or with family, call ahead to discuss sleeping arrangements, special dietary requirements, and any other concerns you may have. When choosing a hotel, you may want to inquire about any renovations at the facility that could bother a child with noise sensitivity. If your child uses a weighted blanket, you may want to call the hotel to find out if they have a heavy blanket your child can use. Take your child’s specific needs and sensitivities into consideration when choosing a place to stay.
We hope these travel tips help make your next holiday trip or vacation a success!
15 Superpowers Special Needs Moms Have
1. Extreme energy to tend to your child’s physical and emotional needs, while mostly ignoring your own.
2. A sixth sense for knowing when something isn’t right with your child.
3. The ability to leap over tall piles of clutter in a single bound. Who has time to organize?
4. Supreme tenacity for getting your child the treatments he needs — and deserves — whether it’s from the Early Intervention team or the IEP people.
5. Bionic patience for handling your child’s obsession with telephone poles/Thomas the Tank/Lighting McQueen/flags/plungers/Xbox/purple/vacuum cleaners/sprinklers/box tops/whatever.
6. Boundless endurance for dealing with insurance company reps. (Press “5″ if you spend an ungodly portion of your life chasing down claims.)
7. Superhuman flexibility for rethinking plans when your outing to the restaurant, play, bounce house or wherever isn’t what your child had in mind, or, rather, he hates it.
8. X-ray vision for peering deep into people’s psyches and knowing whether or not they are comfortable around your child — then doing your best to help them see the child behind the disability.
9. The ability to morph into various people at any given time: Therapist! Teacher! Nurse! Cook! Coach! Cheerleader! Secretary! Chauffeur! Personal shopper! Ball buster! Boo-boo kisser!
10. ESP for knowing exactly what your child is communicating, even if he can’t say a word.
11. Amazing fortitude for putting on your pleasant face at the mall, the park or the party when other kids are doing their typical-kids thing and you feel so alone.
12. An uncanny ability to soothe your child when he’s having a meltdown in Aisle 8….
13. … and strength of steel to deal when your child doesn’t respond and it feels like the world is glaring at you.
14. Force-field generation for blocking out well-meaning but clueless relatives. (“Oh, nothing’s wrong! You worry too much. She’ll be fine!”)
15. Awe-inspiring resilience to pick yourself up after you’ve cried in the shower or car/freaked out on your husband/gone ballistic on the insurance rep/had an OMG-how-am-I-gonna-do-it-all panic attack/joined your child’s meltdown in Aisle 8 — and keep right on doing all that you do.
This post originally appeared on Love That Max. More from Ellen Seidman:
10 things I wish I would have done as a special needs parent from the beginning.
When Casey was first diagnosed with autism, I set out to be the perfect special needs mom. I worked really hard to know all of the information, read all of the books, all while trying to do the regular mom stuff- cleaning, laundry, meals, etc. I burnt out hard. I flung myself into a depression that wasn’t easy to dig out of. But when I finally got out of it what did I do? The same thing. This cycle repeated itself until I found myself in a therapist’s office dealing with chronic pain and debilitating anxiety and depression. I had to change. Looking back, I see now what I was doing that wasn’t working, and found things that help. I was fortunate to understand a lot of these things by the time Abby was born, but there’s still a million more things I could do to save my sanity. These are the first ten that came to me.
1. Learn how to say ‘no’.
There are going to be people that suck the life out of you. You have enough on your plate, if these aren’t reciprocal friendships or endeavors, say ‘no’ whenever you genuinely don’t want to do something or simply can’t.
2. Cut out all of the fluff.
Before Casey was diagnosed, I was seriously concerned about not having enough cute nicknacks in my house. It seems SO crazy to me now. This has been a lesson to me on two fronts: 1. Cut out the literal fluff- anything ‘fluffy’ (nicknacks) in your house that isn’t necessary. Or, at least, don’t buy any more. It’s one more thing to clean. It’s one more thing to get broken. I have a veritable graveyard of Willowtree Angels that I HAD to have. Unless it’s something you do as a hobby, (see below) this sort of thing just clutters up your space and your brain. Which leads me to the second lesson: Cut out the figurative fluff. We live in a Pinterest world where there’s always some way to take an ordinary event and make it extra stressful. Children’s birthday parties are less party now and more extravagant events. Your kid isn’t going to remember the fluff, at least mine don’t. They will see pictures of them blowing out candles on ANY cake- store bought or one with baked in tears.
3. You’ll lose friends. Good riddance.
Someone actually did tell me that I’d lose friends after Casey was diagnosed. I didn’t believe her. I wish I had. And I wish I could have employed the second part of this point too. Disability is a fantastic friendship sifter. You’ll find out who your true friends are because they’ll stick around. They won’t expect you to be fun all of the time. They’ll listen. They’ll come over and sit with your kids so you can get a nap. Those who don’t stick around you are better off without. It sucks to learn that friendships aren’t what you thought they were; but it’s sure nice to know before you devote any of your precious time to someone who isn’t worth it.
4. Don’t overload on disability-specific information.
We are are fortunate to live in a time where information is readily available at our fingertips. After each of my kids were diagnosed, I binged on autism and Down syndrome information. I only read books, blogs, websites and forums about the two. The problem with this is that a lot of the information out there tends to point out the negative aspects of disability. There are things you can’t learn from books- you have to live it. I finally put down my Down syndrome books when Abby was a couple of months old and just enjoyed my baby. I’m not saying to not do your homework, just make sure it’s not ALL your doing. Read funny stuff. Read stupid crap. Mix it up from time to time.
5. Listen to those who have gone before you.
Like I said, there is only so much you can learn from books. Life experience is the best teacher. Parents of older children or adults with disabilities know more than you do. They just do. Will they have done things or have the same perspective on your kids as you do? Maybe not. Listen regardless. I’ve learned more from my friends within the special needs community than I have from any book.
6. Don’t stop being yourself.
This is a lesson for any parent, but especially for parents with children with special needs. Don’t try to fit yourself into the mold of what you think a special need parent should be. I used to think that I had to be brave and strong and happy all of the time. I had to convey to the world how supremely grateful I was for the challenges we had. Bullcrap. That is a mold I cannot and will not force myself into any longer. I like my music loud, I swear, I complain and I make a thousand mistakes a day. It’s not that I’ve stopped trying to be better, no, I just want to be a better version of ME.
7. Find a way to relieve stress.
I should say a “healthy” way to relieve stress. I’ve heard that heroin is a great stress reliever…but you know, it’s heroin. My therapist back when I was having chronic pain forced me to find something that wasn’t autism, parenting, or housekeeping related to do that I enjoyed. He even went as far as forcing me to show him what I had learned to do. I craft. I make crappy jewelry and cards. I love it though. I have friends that exercise, some that knit and others that mercilessly mock me on Facebook. All of these things give their brains a break from the daily battles and give them something to do that is rewarding to them.
8. Take any break you can get.
I used to put my kids to bed and then think I had to get to work on my house, blog, reading, etc. I don’t do that anymore unless I want to. I use the time to relax, catch up with friends, or do something fun. If you find yourself child free, remind yourself to use that time to recharge. You might have to get a babysitter to have child free time. DO IT. I get how hard it is to find a good babysitter. I have an autistic son and a daughter who is medically complicated. It’s necessary. It’s expensive. It’s necessary. Find a way in your budget to have a night free at least every two weeks. If it means giving up eating out, data plans, etc, DO IT. It’s soooo important to be able to get a break. It’s vital to your relationship with your spouse or significant other, and it’s vital to your mental health. Even if you don’t go on a planned date, get a freaking babysitter so you can nap. I once paid a babysitter to watch my four kids so I could sleep in my car. I kid you not.
You’re going to deal with more stress than the average person. If you’ve tried everything else and just can’t keep your head above water, get some help. You might just need someone to talk to. Do it. I’ve found that just talking to someone isn’t enough. I needed help to defray the daily emotional cost of having two kids with disabilities. On my best days, I still need help. Find a doctor that will work with you to find the best medication. I’ve just spent the last six months trying to find a good medicine to help with my new fun anxiety problems. I’ve finally found one that gets me back to normal, and I use therapy to help me stay there. There is nothing wrong with needing medicine or therapy. Nothing.
10. Enjoy it.
You are your kids’ parent first. Advocate, teacher, and therapist are important roles, but they aren’t what you ARE. Enjoy it. As I’ve typed this out, Abby crawled on the edge of the couch by me and then dove head first into my lap. She giggled as she wriggled herself around so her feet were on my face. I ADORE her. I love my time with her when we’re not doing anything else but existing in our roles as mother and daughter. I love having Casey wake me up as he tries to stealthily crawl into my room to sneak into the spot between me and his dad. I love what all of my kids teach me, and though I complain a lot about the minutia of motherhood, I absolutely love being my kids’ mother.
Is Your Baby on Track?
By Sherry Rauh
There’s more to tracking your baby’s development than logging height and weight. There are a number of other childhood milestones to keep watch for.
Pediatrician Michelle Bailey, MD, medical director of Duke Health Center at Southpoint, says you can look for signs of emerging motor and language skills in the very first months of your baby’s life.
“Babies begin to vocalize around 1 month,” Bailey tells WebMD. “At 3 months, they should push their head up when they’re on their stomach. By 4 months, they chatter in response to you and squeal with laughter.”
Bailey says it’s a good idea for parents to watch for these early childhood milestones, along with the more obvious “firsts” such as walking and talking. Just be careful about comparing your child with peers or older siblings. “Remember that each child is an individual,” Bailey says. “There’s a wide range for when children achieve a particular milestone. For example, I’ve seen children walk as early as 9 months or as late as 14 months.”
Spotting Developmental Delays
So how can you tell the difference between a child who is just taking his or her time and one who has a true developmental delay? According to Marat Zeltsman, DO, of Joe DiMaggio Children’s Hospital, a developmental delay is when a child does not reach a milestone by the upper range of normal. Even though babies develop at their own pace, he explains, “every child should do certain tasks by a certain age.” These tasks fall into five main categories:
- Gross motor skills, such as crawling and walking
- Fine motor skills, such as stacking blocks or coloring
- Language skills, including speech and comprehension
- Thinking skills
- Social interaction
Using input from the CDC and the American Academy of Pediatrics, WebMD compiled a rough timeline of milestones in the above areas. Remember, a child can stray from this timeline and still be within the range of normal, but it’s best to discuss any concerns with your pediatrician.
Timeline of Childhood Milestones
|2 Months||Smiles at the sound of your voice and follows you with their eyes as you move around a room|
|3 Months||Raises head and chest when lying on stomach
Smiles at other people
|4 Months||Babbles, laughs, and tries to imitate sounds; holds head steady|
|6 Months||Rolls from back to stomach and stomach to back
Moves objects from hand to hand
|7 Months||Responds to own name
Finds partially hidden objects
|9 Months||Sits without support, crawls, babbles “mama” and “dada”|
|12 Months||Walks with or without support
Says at least one word
Enjoys imitating people
|18 Months||Walks independently, drinks from a cup, says at least 15 words, points to body parts|
|2 Years||Runs and jumps
Speaks in two-word sentences
Follows simple instructions
Begins make-believe play
|3 Years||Climbs well
Speaks in multiword sentences
Sorts objects by shape and color
|4 Years||Gets along with people outside the family
Draws circles and squares
Rides a tricycle
|5 Years||Tells name and address
Jumps, hops, and skips
Counts 10 or more objects
Dear Newly Inducted Special Needs Parent
by Lola Lolita
I see you.
And I don’t mean I physically see you (though I do). I mean I see inside you — I see the storm that’s tearing your soul apart, bit by unimaginable bit.
I can see you because I am you. Not now you, of course, but rather future you. And I’m here to say, I understand.
Whether you’re sitting in a hospital NICU or your car after a visit to a specialist’s office, your mother’s living room or your cubicle at work, I know your pain: a primal cocktail of fear and sadness and desperation and anger.
A feeling like none other you’ve experienced to date.
“They” have told you the second worst thing you could hear as a parent: Your child has special needs. Your child will never walk, talk, hear, see, process, understand, feel, be able to [insert physical/cognitive/functional ability here]. Your child is “not normal”.
And whether your child has suffered a sudden brain injury or suffers from a congenital disease doesn’t matter. The end result is the same: This child’s future is not the one you had imagined. This child is not the one you had imagined.
This child will not have the adolescence about which you have spent hours and days and months and maybe even years fantasizing. This child will need far more than you have anticipated. This child will become at once a trial and a blessing.
You feel guilty for having these emotions, I know. What kind of parent perceives her child as a trial? You should, after all, be glad s/he is here at all. And OHMYGOD you are. You are so indescribably thankful. You are so filled with love for this child, you could burst at any moment. But you are also worried. Very, very worried.
You feel guilty for questioning how you might possibly give this child the care s/he needs. You feel guilty for wondering how you will provide your other children with the attention they require. You feel guilty for fretting about how you will pay for all the medical expenses. You feel guilty for contemplating what all this will mean for your family routine and dynamics.
Some judgy types will jump to curse you for thinking of your child as a burden because that’s all they see in your raw emotion. They will ignore the undying love you have for your child. They will ignore how incredibly grateful you are to have your child. They will ignore your desire to do whatever it takes to ensure your child is safe and happy and healthy. Instead, they will preach about how they would never ever ponder these questions, or worse, if they’re special needs parents as well, how they have never had these same feelings.
Forget them. They’re liars. And perhaps convincing themselves that they would never is just their way of coping.
You will mourn for your child in the same way one might mourn a death. And you are mourning a death, if you think about it. The death of the hopes and dreams you had for your child. The death of the plan you had imagined for your family.
So go ahead and mourn that death. There is nothing unnatural or heartless or improper about it. It is part of the grieving process. It is necessary.
You will be bombarded with “God only gives special children to special people” and “This is God’s plan” from well-meaning people who think they’re doing you a service or simply don’t know what to say.
Grit your teeth and bear it. None of it’s true, so don’t worry. God hasn’t specially selected your child to suffer a lifetime of physical and emotional pain. He hasn’t chosen you out of many to live in agony on purpose. God isn’t that cruel.
You will see parents with “typical” children in the grocery store and at the park. You will see pregnant women smoking or drinking caffeinated beverages. You will see parents abusing their children, both verbally and physically. And you will hate each and every one of these people with all the darkness and malice your soul can muster, for how do they, with their carelessness and ungratefulness, get to escape your child’s and your living hell?
You are perfectly justified in having these feelings. But remember, it isn’t their fault. And while we’re talking about fault, it isn’t yours, either. So indulge in these emotions privately. Most importantly, don’t let them eat you up inside. They are perfectly natural but also potentially dangerous. Entertain them with caution.
Your child will grow and flourish and defy expectation. The cloud of depression and anxiety and despair in which you live will thin. You will feel better. Much better. Many of your initial fears will be allayed as your child comes into him/herself and his/her body. Some of those fears will remain, but they will not burn as hot in your heart.
Some may mistake your poise and grace and got-shit-togetherness as a sign that you’re “over it.” They may expect you to be just as social and able and willing and available as everyone else. After all, parenthood is hard for everyone, so what’s the big deal? What makes your life so much harder than theirs?
Just remember that they don’t know — can’t know — what it’s like to live your life. They don’t know just how many therapists and doctors your child must see, each with his or her own separate set of “homework” assignments to tackle. They don’t know that every play date is just another therapy session in disguise. They don’t know how much time and energy it takes to get one’s shit together every day. Their jobs are hard. But yours — yours is hard in a different sort of way.
The fact that your job is hard does NOT, however, make you a saint or a superwoman or a better parent. It simply makes you capable of doing what needs to be done, just like everybody else. What needs to be done for you and yours may take more time and energy. That’s the only difference between you and them.
Eventually, while you may still ponder the what-ifs on occasion, you will mostly be unable to imagine life any other way. You will be comfortable in your routine. You will be well.
So let me remind you, newly inducted special needs parent, that I see you. I see inside you at the storm that’s tearing your soul apart, bit by unimaginable bit. And I promise you, it will get better. It will be OK. You will be OK. Most importantly, your child will be OK.
And I know this because I am you. Not now you, of course, but future you.
- See more at: http://www.scarymommy.com/special-needs-parent/#sthash.1K0DlO3e.dpuf
MY CHILD’S DISABILITY IS NOT A TRAGEDY
My daughter was zooming through the toy aisles at Wal-Mart with her walker, I was chasing her and asking her to stop or else there would be no Lala Loopsie. Actually, she had more of a run-run-glide thing going on. One of the workers was standing on a ladder arranging shelves and noticed, I was sure he was going to ask her to stop running, but instead, he looked down at me and said, “I am so so sorry she’s like that.” And his face was contorted with great pity and sadness. He thought my daughter’s disability was a great tragedy.
His comment stopped me right there in front of his ladder. Thankfully, my daughter was already zooming by a different aisle and did not hear the man or watch his pitiful face.
“What are you sorry about?” I asked.
“Her being like that.” He said shaking his face, his forehead lined.
Let me pause to say that I really believe that angry advocacy doesn’t do anyone any good. I try to take any opportunity I can to educate and to help people see and understand what life with disability is like. But make no mistake, deep down, I wanted to shake his ladder!
“Don’t be sorry.” I said, “I feel very proud of her.”
“Well of course, but the poor child is unable to walk, it’s just so sad.” He said.
“It isn’t.” I said.
He just stared at me, as if I was the one that did not understand.
“We didn’t even know if she would be able to use a walker independently.” I said, “And look at her, I mean, Look at her! She IS walking.”
At this point Nina was running by us again.
“It’s amazing!” I said, “She’s just a little girl having fun, being naughty, ‘Nina stop running!’ and she loves life. There is nothing sorry about that. She should make you smile.”
That was all, I walked away and caught up with my daughter.
A tragedy, some people think my child’s disability is a tragedy.
Well my child’s disability is not a tragedy. But I know, I know that as we do life some people look at us, look at two of my girls and think it is a tragedy they have a disability. They think we are that poor family with TWO kids with special needs!
But you know what would be a tragedy? If I lost any of them.
And it happens, I know of pregnant women who have a prenatal diagnosis of Down syndrome, and then unfortunately have a miscarriage, and people comfort the once-expecting-parents and say, “It was for the best.”
For the best? Losing their child was for the best? A family with empty arms was for the best? The tragedy in the disability is so great it would be better for them to die?What?
I know, I know, some think that people with disabilities suffer. But let me tell you, my daughter with Down syndrome does not suffer. She actually loves life! She is one spirited little girl full of joy and unconditional love. Hang out with us, no suffering here!
And while my daughter with cerebral palsy deals with pain every day, she loves to be alive. She loves to run-run-glide down the aisles and oh how she giggles! That is certainly not the tragic type of suffering that would render one of those, “It was for the best” if she were to die. Because God knows losing her indeed would be tragic.
My child’s disability is not a tragedy. The tragedy is found in how people perceive disability, and on some pretty inaccurate stereotypes and old ways of thinking. I wish people could see what I see, what I live!
My children are children first of all.
They love to play and swing and swim.
They love Christmas and birthdays and parties.
They love dancing and singing and spinning.
They love chocolate and ice-cream and cookies.
They love making silly faces when the camera comes out.
They love making sand castles.
They love to laugh, to love, to scream with glee.
They make me so proud!
They are children, full of life. So full of life!
Life is to be celebrated and that’s what they do.
My child’s disability is not a tragedy. Life might be different than if we were a typical family, but our lives are rich and full.
BY ELLEN STUMBO
What Are “Special Needs”?
One Term, Many Definitions:
“Special Needs” is an umbrella underneath which a staggering array of diagnoses can be wedged. Children with special needs may have mild learning disabilities or profound cognitive impairment; food allergies or terminal illness; developmental delays that catch up quickly or remain entrenched; occasional panic attacks or serious psychiatric problems. The designation is useful for getting needed services, setting appropriate goals, and gaining understanding for a child and stressed family.
Minuses and Pluses:
“Special needs” are commonly defined by what a child can’t do — by milestones unmet, foods banned, activities avoided, experiences denied. These minuses hit families hard, and may make “special needs” seem like a tragic designation. Some parents will always mourn their child’s lost potential, and many conditions become more troubling with time. Other families may find that their child’s challenges make triumphs sweeter, and that weaknesses are often accompanied by amazing strengths.
Pick any two families of children with special needs, and they may seem to have little in common. A family dealing with developmental delays will have different concerns than one dealing with chronic illness, which will have different concerns than one dealing with mental illness or learning problems or behavioral challenges. This Parenting Special Needs site devotes sections to the following specific issues: medical, behavioral, developmental, learning, and mental health.
Medical issues for children include serious conditions like cancer and heart defects, muscular dystrophy and cystic fibrosis; chronic conditions like asthma and diabetes; congenital conditions like cerebral palsy and dwarfism; and health threats like food allergies and obesity. Children with medical issues may require numerous tests, long hospital stays, expensive equipment, and accommodations for disabilities. Their families have to deal with frequent crises, uncertainty, and worry.
Children with behavior issues don’t respond to traditional discipline. With diagnoses like ADHD, Fetal Alcohol Spectrum Disorder, Dysfunction of Sensory Integration, and Tourette Syndrome, they require specialized strategies that are tailored to their specific abilities and disabilities. If those strategies are not developed and used, kids with behavior issues throw their families into chaos and are seriously at risk for school problems. Their parents need to be flexible and creative.
Developmental disabilities are some of the most devestating for a family to deal with, changing visions of the future and providing immediate difficulties in caring for and educating a child. Diagnoses like autism, Down syndrome and intellectual disabilities often cause children to be removed from the mainstream, and parents must be fierce advocates to make sure their children receive the services, therapy, schooling, and inclusion they need and deserve.
Children with learning disabilities like dyslexia and Central Auditory Processing Disorder struggle with schoolwork regardless of their intellectual abilities. They require specialized learning strategies to meet their potential and avoid self-esteem problems and behavioral difficulties. Parents of learning-challenged kids need to be persistent both in working with their reluctant learners and with the schools that must provide the help these children need.
Mental Health Issues:
A child’s problems with anxiety or depression can sneak up on parents; problems with attachment may smack them right in the face. Living with a child with mental health issues can put family members on a roller coaster of mood swings and crises and defiance. Parents have to find the right professionals to help, and make hard decisions about therapy, medications, and hospitalization. The consequences of missed clues and wrong guesses can be significant.
Although every special-needs child is different and every family is unique, there are some common concerns that link parents of challenged kids, including getting appropriate care and accommodations; promoting acceptance in the extended family, school and community; planning for an uncertain future; and adjusting routines and expectations. Parents of children with special needs are often more flexible, compassionate, stubborn and resilient than other parents. They have to be.
The Bears in the Park: Anxiety and the Autism Parent
And that’s when I realized. It’s no wonder parents of severely autistic children are increasingly being diagnosed with anxiety disorders, PTSD, depression, etc. It’s not because of their children. No, our children give us just as much joy as any others. It’s because there is rarely a time when you aren’t in the park looking around for all those bears.
What and who are these bears? There are many. Elopement, bullying, failure of school districts to provide an appropriate IEP, medical and dental appointments, unfamiliar situations, loud noises, lack of autism awareness, lack of autism acceptance, loved ones who don’t get it, judgmental stares and comments from strangers, inaccessibility from grocery store carts to Disney World, respite care, insurance battles, lack of appropriate housing for autistic adults, and on and on.
So we rarely leave that park. And we stand — fight or flight response at the ready — clutching the hands of our children all the time. While trying to live our lives in all the necessary ways. Meeting the needs of other children. Nurturing our marriages. Paying bills. Working. Caring for older family members. Taking care of ourselves — which, like this list, always comes last. But we do all of these things while anxiously looking around, listening, and facing those bears when we encounter them.
I’d like to follow Dr. Saltz’s suggestions. I’d like to try meditation, thinking myself calm, and reminding myself that I’m out the situation. Except I’m not. I don’t have the luxury of letting down my guard. Because if I do, the bears are still there. My child will not receive an appropriate education. He may be traumatized by people not trained to work with autistic children. Someone might forget to latch a door. A door within minutes of busy intersections and bodies of water. He might be treated as a disorder and not a child. No, the only time I can relax is when he is safe in bed and the house alarm engaged. Even then fears of my own mortality (who will take care of him?), his education, his health (feeding issues), and his future haunt me in those witching hours of worry.
The problem is these fears aren’t unjustified. My anxiety isn’t occurring in the absence of danger. These dangers are real. Because this world is not ready to welcome my son. A son who will one day outlive me. A son whom I fear will not — if needed — be cared for by those with good hearts and a desire to allow him as much independence as he is able. A child whom — in the wee hours of the night — I lie awake envisioning as an old man. An old man — perhaps with no family of his own — lying in a bed and taking his last breaths with no one to hold his hand.
Yes, those bears are all around me.
I don’t want stress to win, but it’s ever present. It steals from me sleep, laughter, and peace. Joy? It’s fleeting. Found in bits and snatches — and always bestowed to me by my children. Yes, it’s there. But it’s often stolen by the thieves of anxiety and fear.
And in my darkest moments, I fear that lack of joy is turning me into a bear. Someone who sometimes fails to appreciate the little things. Someone who will fail to pass on joy to my children — who deserve that in their mother.
Some talk about a national autism plan. Do we need one? Yes. Should it resemble any of the depressing and misleading suggestions we’ve heard so far? No. But we must begin to address the needs of children, adults, and families like mine. We must begin to teach our citizens, our schools, our medical personnel, and our law enforcement how to interact with autistic persons. We must learn new ways to teach, engage, employ, and live amongst those who experience the world differently. And we must begin to plan for the futures of the most disabled on the spectrum.
Until then, I remain perpetually on watch for bears.
Mother, blogger, teacher, school media specialist
ARE SPECIAL NEEDS FAMILIES ISOLATED? BY ERIN LORAINE
Do you feel isolated as a special needs family? I know there are plenty of times I do. Our family is different, and our dynamics are different. My friend Erin wrote this post and it resonated so much with me that I asked her if I could share it here.
Erin’s family consists of 2 biological boys, a little girl with cerebral palsy adopted from Ukraine (besides her CP, she also has a diagnosis of microcephaly, some cognitive delays, and falls in the autism spectrum, she also happens to be my daughter’s best friend from the orphanage) and a little girl with Down syndrome adopted from Bulgaria.
“We’d love for you all to come over for dinner! The kids can all play in the basement while we visit!”
“Would you like to meet us at the park?”
“You are invited to my child’s birthday party! It is at 6:00pm. She’ll have a blast!”
I’m sure you have had those invites. I’ve had them and accepted them with great joy over and over again in my 13 years of parenting. I love fun! I enjoy fellowship with others. I like time with my friends to laugh and have fun.
Now let me tell you why each of those scenario’s doesn’t work for our family anymore. My girls absolutely can not be left alone in another person’s house. Oksana can manage OK in some houses but she still gets into things she shouldn’t, knocks things over because of her balance issues, and trips over things, often hurting herself and/or the children around her. I don’t leave Anya unattended in my own house where I have it appropriately childproofed for a 5 year old with DS. There is no way at all I can leave her unattended in someone else’s house. I learned from experience that Larry and I have no fun at all in these situations and we leave far more frustrated than refreshed. Oh and don’t forget that now Anya is totally overstimulated and will give us negative behaviors for a couple of hours following our “fun” get together.
Birthday parties? Certainly every kid loves a birthday party. We now have to say no to every single evening birthday party invitation. Trust me, we tried it, and every single one ended in disaster. Oksana needs her sleep and when we keep her up late and then at the same time totally and completely overstimulate her it ends in a major melt down.
I don’t say this to complain. I love my life. There is nothing I have ever wanted more than to parent all 4 of my children regardless of their abilities or impact on my social life. I say this to help others understand, and to say that living with a family like this puts us at great risk of isolation. I am involved in a number of online communities and this is a theme I see come up over and over again. Families are isolated. They are lonely. People don’t understand them. I can relate….and I’m not sure what to do about it.
One solution is to have people to our house. That is certainly an option. Can I be honest about this? It takes a great deal of intention for me to do this. I know full well that while having people over is the best route for our girls, it is also the hardest route for me. Now I need to clean my house (I’m sorry if you think that is crazy but I can not comfortably have people over when they have to make a path to get through my living room), I need to consider what I will feed them (did you know I hate cooking?), and I need to give them the speech about what to do if one of my children tries to hug them, sit in their lap, etc. Then I have to give Oksana the lecture about giving people personal space, not using them to lean on, etc. Can you see why I’m not on the phone inviting people over every weekend?
We do have other options. One is that Clayton is 13 and since the girls go to bed so early we can put them to bed and then meet up with people. I’m not saying we are out of options, simply trying to show that living with kids with special needs can easily put you on a slippery slope to isolation. Does anyone else feel themselves slipping away?
10 SPECIAL NEEDS OF SPECIAL NEEDS PARENTS
As a mother to two little girls who have Down syndrome, I need parents of typically developing kids to know something. I have needs. And yes, they may be a bit special because I have “children with special needs.” Parental support from others in this crazy business of raising kids is essential in a mother or father’s life. So it can be painful when support falls flat, or if it doesn’t show up at all. How do you act around your friends who have children with special needs, or around the woman at school you see at pick-up, or the dad standing behind you in line at the grocery store?
10 special needs of special needs parents:
- We need you to bring it up. Ask us our stories. It’s OK to ask questions. Most parents of children with special needs would prefer that others ask them about their child directly, rather than avoiding the topic. A smile or friendly “Hello!” is an easy icebreaker.
- We need our kids to have friends. We want you to invite our kids over for play dates. If your child wants to have a play date with my kid or invite him or her to a birthday party, encourage it. Call the other parent and simply say, “How can we make this work?”
- We need you to share your concerns. If you are concerned about something regarding my child, by all means, tell me about it. I may not have an answer for you, but I sure will appreciate a conversation about my kid. But we don’t always need your advice. Feel free to talk to us about a new therapy or diet you’ve heard about. Just be aware that we’ve probably already heard of it/tried it.
- We need you to make an effort. Effort goes a long way. Educate yourself about my child’s special need. For instance, learning simple signs so that you can better communicate with a child who is deaf (and uses sign language) would be appreciated.
- We need you to prepare your kids to hang out with our kids. If you know you will be spending time with my child who has a disability, talk to your child about it beforehand. Talk about behaviors, and ways your child can play with my child. Need ideas? Ask!
- We need you to be considerate. Consider the age of the child with special needs. If it is a new baby or a younger kid, I may not be ready to talk about this parenting path I have found myself on. But that doesn’t mean I won’t ever want to talk about it. Follow my lead. I’ll let you know.
- We need your tangible help. Offer to bring over a meal, or help at a doctor’s visit. I’d love it if you hung out with my kids with special needs one afternoon so that I could take my other kids to a matinee.
- We need you to treat us like other friends, too. Talk about other things with me besides my child with special needs. Believe it or not, I may just want to gossip about Angelina and Brad and their globe trotting kids.
- We need validation. Don’t dismiss my concerns by saying “oh, my typical child does that”, or my favorite “well, then my kid must have a disability too, because he/she does XYZ also”. When I open up about a struggle, I want validation, not to be blown off.
- We need invitations. Don’t assume I’m too busy. Ask me out to eat or to a movie. I may not be able to get away as easily as other friends who don’t have kids with special needs, but I’ll go if I can, and if I can’t, your invitation will make my day. And ask me again!
Your Child’s Early Development is a Journey
Easing the Back-to-School Transition for Kids with Special Needs
As the lazy days of summer draw to a close, mothers everywhere begin preparing themselves and their children to head back to school. For moms of special needs children, the emotions can be more intense and the preparations more involved.
Most parents of kids with special needs start planning for the school year during the spring IEP meetings when goals are set for the upcoming year. With luck, you’ll be introduced to your child’s new teacher at that meeting, as well as other staff members. Sometimes circumstances change, however, and the teacher you loved winds up in a different district come September. That’s why you shouldn’t consider the spring IEP meeting the final word. But that’s just the first step.
“I request an informal ‘staffing’ with the teachers and team before the school year begins to which all are invited,” says Gloria Perez-Walker, whose 11-year-old son, Aiden has autism.
She explains that with children who have a hard time with transitions, visiting the school prior to the start of the academic year is critical. Perez-Walker writes up a one-page document with her son’s likes and dislikes, an abridged version of their family history, and key points from Aidan’s IEP. “Not all of his new school staff will have read it,” she explains. But this way, “the entire new team of teachers, admins, and even the janitorial staff, know us and our son.”
Veteran teacher Nicole Eredics agrees with this approach. Parents should definitely meet the teacher ahead of time and tour the new classroom. “If your child is new to the school, ask if you can see the rest of the building. Don’t forget to check out the playground!” says Eredics, who has spent more than 15 years as an elementary school teacher in inclusive classroom settings and also has two children of her own with special needs.
Back-to-school season is a time of transition, but it doesn’t have to be a time of tantrums and meltdowns if you plan ahead carefully. Here are 10 things you can to do today to help prepare your special needs child for going back to school:
Make a Transition Book
Take a camera to these meetings and take pictures of everything you can and use them to create a transition book. “This is a book about your child’s new teacher and class. Look at the book regularly to help your child become familiar with the new environment,” Eredics says.
Learn the New Routine
Ask the teacher to go over the daily classroom routine so that you can review it with your child. Create social stories and review them often so that your child knows what to expect when school starts.
Of course for children with special needs, back to school doesn’t necessarily mean heading back to a building. Renee Cole has a 7-year-old son who is a former micro-preemie with multiple medical issues. His needs mean that school – like other needed services – comes to him at home. Even so, she says, it’s critical for parents to remember that no one at school knows your child better than you do. “Be involved!” she advises. Cole starts each school year by making it clear that she is ultimately in charge of her child’s wellbeing, and that she welcomes input and opinions from his teachers and other service providers. (Be an Advocate for your Child’s Needs.)
It’s also important to remember that kids will pick up on your stress, so make sure you have all your necessary supplies early. “I like to have everything ready a full week before school starts — clothes, supplies, meeting the teacher, as well as have the bedtime routine down. It usually makes for smoother adjustment from summer schedule to school schedule again,” says Deborah Arrona, a Pasadena, Texas, mother to Aria, who has cerebral palsy, cortical visual impairment, and other special needs.
Keep Your IEP Available
Because Arrona is moving this year, her daughter will be in a new district and Arrona has taken copies of Aria’s IEP to the new school so that it can be distributed to everyone well in advance of the start of the year. “This way they have the whole summer to get to know my daughter on paper and be ready to meet her in person,” she says.
Snap Photos for Social Stories
You can have one for your morning routine at home, one about going to school, and one for situations your child may encounter at school, such as eating lunch in the cafeteria. Take pictures with your digital camera or cell phone, develop them directly into a book at a local drugstore, and then narrate them with your child again and again.
Make Digital Copies of Your IEP and Other Paperwork
You’re going to have to send multiple copies of these documents to various professionals throughout the year, and it’s very handy to have them available via email. Stop by an office supply store and have them make you a digital copy as well as an extra hard copy to have on hand.
Schedule Your Well-Child Check up
Don’t wait until the school nurse calls to say she doesn’t have your child’s updated records. Schedule your child’s appointment as early as possible – and when you schedule the appointment, let them know you need immunization and other records for school.
Talk to Your Child
So often, adults know what’s going to happen, but they forget to share this critical information with kids. Sit down with your child, and talk about what he can expect. The first twenty (or two hundred!) times you say, “You’re going to a new school!” you may be greeted with a firm “No!” – but eventually the message will sink in.
Prepare a One-Page Guide to Your Child
Write up a brief, one-page document that covers your child at a glance. Note any food allergies or medical needs the school should know about, things that are likely to set your child off, and things that will calm him down, as well as emergency contact information.
7 Ways to Help Kids with Special Needs Foster Friendships
Photo Credit: imagerymajestic at www.freedigitalphotos.net
Parents of kids with special needs worry about many things: health issues, medical bills, school cooperation, and the future, to name a few. When I talk to parents one-to-one, another worry enters almost every conversation. Will my child have friends?
7 Ways to Help Kids with Special Needs Develop Friendships
In an article for LA Parents, Elaine Hall outlines 7 ways parents can foster friendships between their kids with special needs and other children. Here’s a brief summary of each one.
#1: Be Open to a Different Way of Relating
Kids with special sensory needs crave friendships and empathy. They just express it differently. So find other children who plays well alongside your child to build positive emotional experiences.
#2: Build Friendships Around your Child’s Interests
Observe areas where your child excels and find others who like to do similar activities. Or find classes that explore your child’s preferred interests and passions.
#3: Be Aware of your Child’s Sensory System
Avoid overloading kids with too much stimulus. Find peaceful, quiet places to foster friendships. In calm environments, friendships can be nurtured.
#4: Bring Your Child’s Peers from School into Your Home
Fostering friendships is easier in an atmosphere where your child feels comfortable. A home can be a good environment to teach other kids about your child’s challenges and interests.
#5: Enlist Peer Role Models During School Time
See if there’s a way to pair your child with an athletic peer during recess. The peer can “coach” your child through complicated and confusing games and gain self-esteem by sharing expertise.
#6: Model and Practice What It Means to Be Friendly
You can discuss rules with your child and offer coaching about information most people know instinctively. This will assist your child in learning social rules of play.
#7: Celebrate and Point Out When Your Child Is Being a Good Friend
Offer specific positive feedback when kids demonstrate good friend behavior. Example: That was so nice of you to share your markers with your friend, Caroline.
Hall offers many more explanations, ideas, and links in the article Helping Your Special Needs Build Meaningful Friendships. So check it out and read all the way to the end to read one of my favorite C. S. Lewis quotes.
How to take care of your marriage when you have a child with special needs
Taking care of your marriage is important when you’re taking care of your child with special needs.(Washington Post)
I was watching an episode of“Parenthood” the first time I heard the number. The ridiculously high, scary number. You know, the one that says that 80 percent of couples who have a child with autism will get divorced. Yikes.
Except, thankfully, it’s not true.
“It’s an urban legend,” says Laura Marshak, a professor in the department of counseling education at Indiana University of Pennsylvania and co-author of “Married with Special-Needs Children: A Couples’ Guide to Keeping Connected.”
Well, that explains why I could never find any hard data to back up that statement. Because believe me, I tried. I was Googling every possible word combination I could think of, panic-stricken. Nothing.
That’s not to say that couples with a child with a disability don’t face extra challenges, pressures and stress. They do. Marshak says there have been studies that show a higher divorce rate among couples who have a child with special needs, but it’s nowhere near 80 percent, she said.
All marriages have ups and downs. Tossing in kids can intensify whatever strengths or weaknesses are already there. Add a kid with a disability, and well, the stress is amplified. Even though they love their kid like crazy, the worrying and advocating and fighting with insurance companies or schools can wear parents down over time, and make them more snappish with one another.
Sometimes, physical exhaustion from caring for a child who doesn’t sleep well at night wears parents down. Sometimes, one parent puts so much energy into helping the child that they don’t have much left at the end of the day for their spouse. Sometimes, couples feel a disconnect because they disagree about what is best for the child.
Daily life, Marshak said, is more difficult than it otherwise would have been, and not everyone is prepared to deal with that. But it doesn’t have to be a death blow to a marriage, she said.
“There are more difficulties in terms of lack of time and financial demands, and there is certainly more stress,” Marshak said. “But just because a marriage is more difficult doesn’t mean that it can’t become as strong or even stronger. People tend to equate more difficult with worse.
“Yes, there are more difficulties. But there’s an arc to learning how to have a good marriage under those circumstances. If you learn to adjust and adapt, it can become quite strong. It is just as possible to have a thriving marriage despite those difficulties.”
Marshak recently shared ways couples can maintain a strong marriage when they have a child with special needs. Here are some of her suggestions (which could really apply to all parenting couples):
1. Do not just become “parent-partners.” When parents’ only connection to each other is through or about the child, it can cause problems, Marshak said. She encourages couples to spend 20 to 30 minutes each day connecting to each other, with no talk of the children allowed. That helps you remember the person you fell in love with.
2. Embrace your differences with your partner. Parents may have different ideas about what their expectations should be for their child, or the best course of treatment. One parent may grieve the child’s diagnosis and the other may not. It’s important to not just tolerate, but embrace your partner’s point of view, Marshak said. When you really try to appreciate your partner’s perspective—instead of insisting that he think like you—it can strengthen your relationship.
3. Be proactive when marital resentments build. Whether it’s asking your partner to pitch in more with the household chores or putting him in charge of wrangling with your insurance company, ask for help sooner than later. If you wait until you’re angry, resentment is already building.
4. Get creative when it comes to romance. Date nights are great, Marshak said, but they might not be an option for some parents of kids with disabilities. So look for creative ways to be romantic at home. One mother told Marshak that she and her husband would have candlelight dinners with their kids on their lap. Or make use of the time when the kids are in school for dates.
5. Appreciate each other’s efforts. Parents may need to rethink their roles so that caring for the child is not exclusively one person’s responsibility, Marshak said. Couples who are raising kids with disabilities often feel depleted, or put upon, she said, when one parent does all of the caregiving. Sharing the responsibilities and giving credit for effort can help make you feel more like a team.
Is My Child Okay? Six Steps for Assessing a Young Child’s Development
- Written by Kerby T. Alvy, Ph.D.
This is a question that every parent and childcare worker asks when they notice something odd in the behavior and functioning of a little child. How can one best ascertain if a problem or delay really exists? There are six important areas of child development to examine in order to determine whether a child is progressing at a normal pace. Read on for some examples of age-appropriate skills to look for.
1. Movement (physical development).
- 4 to 5 months old: Does baby do push-ups or bring hands and toys to his or her mouth?
- 9 to 12 months old: Does child sit independently, crawl, creep or scoot forward?
- 18 to 23 months old: Does child climb into chairs, walk forward, turn pages in a book?
- 3 years old: Does child run easily, falling rarely or kick a ball forward?
- 4 years old: Does child run easily, or copy a circle and a square?
2. Thinking and learning (cognitive development).
- 4 to 5 months old: Does baby listen to conversations or follow conversations with eyes?
- 9 to 12 months old: Does child explore with hands and mouth, or find hidden objects?
- 18 to 23 months old: Does child put small toys into a cup, basket or box?
- 3 years old: Can child tell his or her first name (or nickname) and last name?
- 4 years old: Does child know the difference between boys and girls?
3. Communication (receptive and expressive language development).
- 4 to 5 months old: Does baby imitate some sounds you make (like a cough)?
- 9 to 12 months old: Does child respond to own name (for example, look up when called)?
- 18 to 23 months old: Does child point to objects or people to express a need?
- 3 years old: Does child use words that describe things like “it’s icky” or, “I’m hungry”?
- 4 years old: Does child refer to self as “me” or “I” in addition to name?
4. The Senses: Vision, hearing and touch (sensory development).
- 4 to 5 months old: Does baby turn head or eyes toward a sound?
- 9 to 12 months old: Does child enjoy or put up with different types of touch?
- 18 to 23 months old: Does child respond when name is called?
- 3 years old: Does child move to or hum along with music?
- 4 years old: Is child mostly comfortable with change or going from one activity to another?
5. Relating to self and others (social and emotional development).
- 4 to 5 months old: Does baby usually quiet or calm down when talked to, held or rocked?
- 9 to 12 months old: Does child enjoy watching (and may play) games like peek-a-boo?
- 18 to 23 months old: Does child approach other children?
- 3 years old: Does child take turns in games?
- 4 years old: Does child enjoy humor (for example, laughs at silly faces or voices)?
6. Self-care (daily living skills).
- 4 to 5 months old: Does baby sleep regularly for three to four hours at a time?
- 9 to 11 months old: Does child feed self with fingers?
- 18 to 23 months old: Does child pull off simple clothes (such as socks)?
- 3 years old: Does child wash his or her hands without help?
- 4 years old: Does child brush his or her teeth by themself or with help?
In most instances, parents and childcare helpers will find that the child is developing in line with these types of normative age expectations. In cases where the child does not appear to be progressing normally, you need to use more detailed resources to obtain a fuller appreciation of the child’s current development.
One such resource is the non-profit Center for the Improvement of Child Caring (CICC), which created The CICC Discovery Tool to provide specific guidelines in which to evaluate a child’s development. The Tool includes a comprehensive online questionnaire to fill out for children under five to get a good gauge on whether that particular child may have special needs that require professional attention. Armed with a developmental profile from a credible child caring organization, a parent or childcare worker is in a better position to advocate for the child and get the proper intervention and care to set him or her on the best path possible.
Packing Tips For Families
1) Make a list. You can find the one I use here. When I do a “final check” with this list, I always discover something I have missed.
2) Pack good carry on bags. You’ll want to include healthy snacks, little treats, small toys/games, movies, special blankets/stuffies, water bottles, iPods/iPads, etc… If you are flying, you will want to pack a pen for customs forms/baggage tags and some gum/suckers for the kids (to help with their ears when the plane is landing). A change of clothes and bathing suits are helpful too… in case luggage gets lost or delayed.
3) Pack a lunch. I detest being forced to buy overpriced and junky food when on a road trip, spending time in an airport, or staying in a hotel room. I always bring supplies (that don’t need to be refrigerated) that I can use to prepare a simple picnic lunch. I like unsweetened applesauce, bananas, bread, and peanut butter. It’s not fancy… but it’s economical, tasty, and keeps my boys happy and full.
4) Put together a bag of basic medical supplies. I always pack Gravol, Benadryl, Tylenol, bandaids, a thermometer, ear drops, etc… There is nothing worse than being in a strange city (with a sick child) searching for an all night pharmacy.
5) Use sealable storage bags. I use bags to: keep organized, identify special outfits, isolate dirty items, and hold wet stuff.
6) Pack light (especially if you will have access to a washer and dryer). Try to choose multi-functioning outfits and items that can be layered. Be selective, and only take what you really think you are going to need. Packing light saves baggage charges, makes it easier to transport luggage through the airport, and helps with fitting luggage into the truck of a rental car.
7) Stay organized – Some people recommend rolling your clothes, but I prefer them folded in neat piles so I can see what I have and keep things organized. I pack all three boys in one suitcase (divided into three sections).
Tough Love: 10 Reasons Why Special Needs Moms Should get A Special Thank You on Mother’s Day
A mother of a person with a disability prioritizes love. Messy love. Around-the-clock, non-stop love. Tough love. Turbo-charged love. Drop-everything-and-go love. Personally, I don’t think I really understood or experienced unconditional love until I became my son’s primary caregiver and advocate.
But there’s a big risk to that kind of love. There’s short-term stress from dealing with everyday behaviors and there’s long-term stress from quality of life issues, school planning and transitional planning. All that stress has an effect on a person’s body and mind. Caregiving doesn’t take a holiday.
This Mother’s Day, consider these ten facts about mothers of individuals with disabilities, taken from the pages of peer-reviewed medical and scientific journals.
Mothers of individuals with developmental disabilities are disproportionately more likely to put their own education on hold to become a full-time caregiver, compared to mothers of children without disabilities.
Mothers of children with disabilities are less likely to have paid employment because of the demands of caregiving than mothers of children without disabilities.
3. Financial Stress
Because of their lower income, mothers of children with disabilities are more likely to report financial stress than mothers of children without disabilities. Almost 30 percent of families raising a child with a disability live in poverty.
The American Academy of Pediatrics found that “Caregiving demands contributed directly to both the psychological and the physical health of the caregivers. The practical day-to-day needs of the child created challenges for parents. The influence of social support provided by extended family, friends, and neighbors on health outcomes was secondary to that of the immediate family working closely together. Family function affected health directly and also mediated the effects of self-perception, social support, and stress management.”
Mothers of children with intellectual disability or autism are more likely to experience moderate to severe depression than mothers of children without disabilities.Environmental stressors are thought to trigger the onset of depression.
6. More Stress & Less Support (Tube Feeding)
According to the Journal of the American Dietetic Association, ”Mothers of children requiring tube feeding experienced significantly greater stress than mothers of children with disabilities who do not require tube feedings. Mothers of children requiring tube feeding also receive less support from family and friends.”
Caregivers spend more days sick with an infectious disease and have a weaker immune response.
8. Chronic Health Problems
Caregivers are more likely to develop a chronic health problem such as diabetes, heart disease, arthritis or cancer.
9. Anxiety & Abuse
Depressed caregivers are more likely to have anxiety disorders and/or substance abuse. Depression also increases the risk of suicide.
Family caregivers are at risk for increased and/or premature mortality.
I write this as a mother who left her teaching career and unfinished doctoral dissertation to care full-time for a child with a developmental disability. I am also a mother who has survived cancer and has sought treatment for frequent infections, most recently pneumonia. I know what I’m risking on a daily basis and I have no regrets. And I’m going to enjoy Mother’s Day.