Special Needs Parenting

A Day in the Life of a Special Needs Mom

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Welcome to a peek into what the day in the life of a special needs mom looks like. Of course, a day in the life of any one mom is going to look very different than a day in the life of another mom and no two days are the same for any mom. In my case, I have five kids with special needs with a fairly wide range of different diagnoses so detailing our routine presents challenges as there are so many variables.

I decided that instead of focusing on one particular special need and explaining how that affects our family’s routine, I would instead present a peek into a typical day in the life of this special needs momma.

It’s ironic that I’m typing this particular post today because this day is about as far from typical as you can get. I’m typing in the front passenger seat while we drive back from a camping trip with the kids. I’m not a camper, so that’s pretty outside the norm. I won’t talk about what this week has been like but instead focus what our regular days at home are like.

In our home, we have three type of days. We have what I would call at-home days and then we have appointment days and then we have never-a-dull-moment days.

At-home Days.

Before I was the a special needs mom, I was the mom of two neurotypical children so I have a pretty good idea of what the differences are between that life and the one I’m living now. A normal day now consists of me getting up before the kids are awake, working on my blog or whatever book I’m writing at the time and maybe doing a bit of tidying up and throwing a load of laundry in before the kids get up. With a large family, there is always laundry to be done!

Once the kids are up, we have our morning routine which is similar to what probably goes on in most homes but the main difference would be that particularly with our one daughter, I have to be involved and help her through her routine even though she’s ten years old, as even the basics such as personal hygiene and toiling are challenges for her due to her delays.

It’s about this time of the day that the battle of the hearing aids begins. Dancing Queen has progressive hearing loss but she is quite resistant to wearing her hearing aids. As a result, her speech continues to get worse and she becomes harder to understand so I’m quite rigid on insisting that she wear them. This battle continues off and on until bedtime and usually includes a family wide game of searching-for-the-missing-hearing-aids because she takes them off throughout the day and forgets where she puts them.

The kids have breakfast and I read them a story and we talk for a bit and pray together for people we know using our prayer wall. During the school year, one of our sons heads off to school on the bus while the rest of the kids start homeschooling.

In the midst of the morning routine and homeschooling, there are usually several behaviour issues that go far beyond what would be considered typical so we parent a bit differently than a typical family might.

Five of our kids have Sensory Processing Disorder so we take sensory breaks throughout the day and even while we are homeschooling. We also have many sensory items that we use throughout the day to make it easier for our kids to cope and even thrive.

After homeschooling, we have lunch and I do some clean-up. The afternoon is usually spent with the kids playing. This looks similar to most other kids other than the level of supervision that is needed considering their ages and the sensory needs.

Our one son comes home from school. There are some behaviour issues and sibling conflict that need to be dealt with. We eat supper. The kids play again and then we start their bedtime routine and tuck them in and I work again on my blog or writing in the evenings other than date night.

Our at-home days don’t look much different than yours might other than having to remember some of the kids’ medication schedules, increasing supervision and assistance, meeting their sensory needs, the frequency and intensity of the behaviour issues, and the worry.

I find that the worry I have as a mom of kids with special needs is a constant struggle. What that daily routine could have said was “wake up, worry, get frustrated with myself for worrying because it does no good, work, worry, breakfast, worry, homeschool, worry, pray and try to give control to God, behaviour issue, pull control back from God and start worrying again, lunch, clean-up, worry, kids playing, child gets hurt, worry, pray, supper, worry, remind self not to worry, worry some more…”

Appointment days.

I try to schedule all of our appointments in the city for one day a week instead of going to appointments almost every day. Our appointments include:

Miss Optimism needs two injections every second week and those are in a neighbouring city downtown.
Miss Optimism and Granola Girl to the paediatric pulmonary specialist bi-weekly or monthly.
Dancing Queen’s audiology – ear mould fittings every six months and going to pick up the new ear moulds, audiograms every six months, appointments for broken equipment which has been happening a lot lately
Dancing Queen to her specialists including ENT, genetic counsellor, paediatrician, psychiatrist, therapist
Einstein to therapy
Snuggle Puppy to psychiatrist, therapy, orthodontist
Regular appointments such as dentist, optometrist and doctor.

I also try to run my errands like going to the pharmacy plus the normal ones that other moms have to do like the bank and the grocery store on those appointment days. The grocery store is more of a challenge. Dancing Queen is too big to go in the cart or a stroller but has a tendency to wander off and has issues surrounding appropriate boundaries with strangers so a trip to the warehouse store can become a crisis or at least cause for panic in a hurry. I try to stick to going to one local store where they know us and know her and I feel much safer there. If she were to try to leave that store with someone who wasn’t me, there are many employees there who would know and try to alert me.

On appointments days (at least one a week), I need to plan for waiting rooms, lunch and snacks for the kids and those are days when I am particularly glad to have freezer meals so that I don’t have to worry about supper when we get home.

With our kids’ special needs, there is also a lot of paperwork. There are papers to apply for funding to help cover some of the costs, papers to fill out for respite, for community aid workers (don’t have that yet because I’m not done the paperwork), for their specialists, for their post-adoption workers, for the testing that needs to be done. There is literally paperwork for some of the other paperwork!

Never-a-dull-moment days.

The thing that I find most difficult about this is that I live everyday with the knowledge that any day could turn into one of these days. It’s like I can never fully exhale, never relax, and always have to be on guard. Even if I’m out on a date with my husband, the phone could ring. Even if the kids and I are having a nice relaxing day where everything is seeming to go well, things could turn at any moment.

There are two reasons that days can turn into a never-a-dull-moment day at our home. One is that two of our children have difficulty understanding cause and effect. This means that one of them may decided to jump off the back of a moving snowmobile not thinking about the possibility that her leg would get wrapped around the tread and break or one might jump from the playhouse roof over the trampoline net and onto the trampoline when her sister is already on the trampoline, thus landing on her sister’s head and causing a concussion. (both of those are our true stories and I could give many more examples) Both of our kids with this as part of their reality are improving.

When they were younger, they would run out into traffic or climb out onto the roof or find matches and light a teddy bear on fire or walk out into a field of cows at two or ride their bike through a glass panel on the deck. They still require more supervision and teaching than other kids their age might, but they are making significant progress. We now have less trips to the emergency room than we used to.

The other reason for never-a-dull-moment days is that two of our children have RAD (Reactive Attachment Disorder) in addition to PTSD, ODD and other diagnoses, so when there is a trauma trigger for one of them (which can come from anywhere at anytime), things turn very quickly. So in our house on the never-a-dull-moment days, the result may be a trip to the hospital or worse. Also with two of our girls having severe asthma, that can also result in a trip to the emergency room. So there’s always the possibility of excitement around here.

As I used to ask my friends…”please pray for boring for me!” With the risk of the never-a-dull-moment type of day always looming, that leads to more worry.

I worry about their futures. I worry about their interaction with friends or lack thereof. I worry about how others will treat them, about how they will adapt to the world, whether we are making the right decisions for them. I worry about worrying too much because I know that I am supposed to be trusting God and that fear is not from Him which brings me back to the worry-pray cycle I was describing before. I also worry about all the things that every parent worries about.

Other than our never-a-dull-moment days and the amount of appointments and paperwork I’m describing, I have the life of most any typical mom except that everything in our life is taken to an extreme both because of the size of our family and because of the special needs of our kids. A lot of the behaviours and difficulties that our kids display are ones that typical kids also display. The difference is the frequency and intensity.

Frequency and intensity pretty much sums up the life of this special needs momma. Oh and worry of course, but I’m working on that one!

Join me for a free 5 part email series, Little Hearts, Big Worries offering resources and hope for parents.

I am pleased to have joined a fabulous group of bloggers to bring you this series on Parenting Special Needs Children. Be sure to read their stories on daily life.

How to Homeschool your Child with Special Needs | Natural Beach Living

Day to Day Life Parenting a Child with Reactive Attachment Disorder | Every Star is Different

Life with Trauma ~ Living in the shadows‎ | STEAM Powered Family

Reality Bites: Autism and Daily Life | My Home Truths

Why Special Needs Moms are Exhausted All the Time, But Will Never Ask for Help| Life Over C’s

A Day in the Life of a Special Needs Mom| The Chaos and The Clutter

A Day in the Life: A Blogging Mom and Her Special Needs Kids | B-Inspired Mama

Failing My Son and the Routines He Can’t Explain | This Outnumbered Mama

Everyday Accommodations & Strategies for Kids with Hyperlexia | And Next Comes L

The Importance of Visual Schedules for Non-Verbal Autistic Children | Kori at Home

One Simple Trick to Connect with Your Child – Even on the Rough Days| Parenting Chaos

Navigating The Stream: The Trails of Daily Routine | 3 Dinosaurs

Recognizing the Signs of Reactive Attachment Disorder

Does my Child have Sensory Processing Disorder?

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Must Haves for Kids with Sensory Needs

By Sharla Kostelyk

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Four of my kids have Sensory Processing Disorder (SPD). It’s been a challenge to learn what works best for them but now that we have been on this road for many years, I have discovered things that make their lives so much easier.

I wish I had known in the beginning what a huge difference a few small changes could make. These are some of the must-haves that I have found in working with them. It was hard to create this list because not only are there different types of Sensory Processing Disorder that present very differently and can actually present opposing needs, but each child is also so unique.

You can read more about the signs of Sensory Processing Disorder here. I am sharing what works for some of my kids. What works for other kids with sensory needs may vary.

The books…

For parents and teachers, the best book out there is Sensory Processing Explained. I may be slightly biased since I am one of the authors, but it is such a wealth of information. The information is accessible and easy to understand.

There are several books geared towards children regarding Sensory Processing Disorder and I have shared some in Must Have Sensory Processing Books for Kids.

You can also find all of my favourite books for parents on Sensory Processing in The Best Books on Sensory Processing for Parents.

Weighted items…

Not all of our kids like weighted items but the ones that do, love them! We buy our weighted blankets, capes, neck rolls, and neck curves at Innovaid (you may recognize some of the models on their site as my kids!).

Two of our kids who like deep pressure have a very hard time sleeping without their weighted blankets. Those same two have an easier time attending during our homeschool lessons if they wear a weighted cape or neck curve. They also have weighted stuffed animals that seem to help calm them.

There are tutorials available that walk you through making your own weighted blanket. (hint: click that highlighted text to take you to a list of online tutorials) There are also tutorials for making your own weighted vests.

Fidgets…

Fidget toys such as the ones from Tangle Creations can be very helpful in focusing. Especially for children who have to attend for longer periods of time, they can make a tremendous difference. In order for something to be called a fidget toy, it doesn’t need to be officially sold as such. The one most often used by my kids is sensory balls and we make our own for pennies.

My kids also use things like knobby balls or stretchy snakes when they are sitting at their desks so that they have something in their hands to squeeze and pull and move around in their fingers but that doesn’t make a lot of noise or distract the other kids.

Project Sensory offers a wide variety of fidgets as well as other sensory items. They are focused on helping children succeed at navigating the world around them.

Seat Aids…

Two of my kids really like the Movin’ Sit Cushion. This wonderful invention allows them to stay seated but move around silently at the same time! Not all of my SPD kids like it though.

There are other ways to help your child with SPD in sitting. At places like Ikea, you can buy round textured disks that are about the size of a seat and some kids like the feel of sitting on them.

Another adjustment you can easily make to the chairs in your home to make them more SPD-friendly is to put a theraband or other type of stretchy band around the legs of the chair. This provides sensory feedback to a child who is sitting swinging their legs, as the backs of their legs will make contact with the theraband. One way to explain why some children find this helpful is this…children with SPD do not always have a good sense of where their own body is in space and when their legs swing freely while they sit, it can be an unsettling feeling, but providing a resistance band on the legs of the chair gives them feedback and lets them know where they are in relation to the chair and to the room around them.

Other suggestions include things such as bean bag chairs or swivel chairs, though I don’t recommend swivel chairs in a classroom setting! We have a bean bag chair in our homeschool classroom and it is very popular!

Sensory Bins…

We use sensory bins every day in our home and our homeschool. All of our kids love them and they have been particularly effective with our kids who have SPD. I try to make a different sensory bin every week. I sometimes incorporate what we are learning in our homeschooling into the sensory bin.

Chew Toys…

Some sensory kids feel the need to chew on things. If they are not given something to chew on, they will chew on pencils, clothes, toys, or even their own fingers. For “chewers”, chew toys are a healthy alternative to those things. There are chew toys that can be purchased, Chewlery (chewable jewelry), pencil toppers designed to be chewed on, or chewy wrist bands.

Play Dough…

Play dough is an inexpensive and effective tool to use with kids with SPD. If you have some readily available, kids can use it when they are anxious, overstimulated or even while they are trying to sit still and pay attention. The store-bought play dough doesn’t stay soft for very long and can get crumbly and messy, so I prefer to make my own such as this lavender scented playdough (although I don’t love all that stirring!). There are many wonderful recipes available for homemade playdough online like Jello Playdough and I have included some recipes in my Sensory Bins book.

Anxiety Aids…

Sometimes, sensory issues and anxiety can go hand-in-hand. For my youngest daughter who deals with anxiety due to other issues, I have created an anti-anxiety kit and many of the items in the kit are useful with all of my kids, particularly when they are overstimulated and are having a hard time self-regulating.

Snugness…

Some of my kids are more comfortable wearing tight clothing or having the feeling of being snug. There are several ways that we achieve this. One is by them wearing a gymnastics body suit (the kind that goes down almost to the knee) that is a size or two too small underneath their clothing. Innovaid carries a pressure vest that provides essentially the same effect and can be worn under or over clothing.

Another way is by using a sensory sock. You can make your own by sewing a tube with stretchy fabric.

Music…

Some children with SPD find music soothing and it can help with their self-regulation. For kids who prefer white noise, a small sound therapy machine can be invaluable. When it comes time to do quiet seat work in our homeschool, ironically, the classroom is actually quieter if I play music while the kids do their work!

Noise Reduction Headphones:

One of our sons could not get by without his noise reduction headphones. He is extremely sensitive to sound and uses them in the house and especially when we go somewhere that is going to be loud. I try to remember to bring them with us when we will be going to see fireworks or in a crowded place that may be noisy. They have made a huge difference.

Looking for more help? Sign up for a free 5 part email series, Little Hearts, Big Worries offering resources and hope for parents.

What items have you found to be must-haves with your kids with sensory needs?

Surviving Public Bathrooms with a Child with Sensory Issues

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Recognizing the Signs of Reactive Attachment Disorder

By Sharla Kostelyk

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Last month, I was asked to take part in a year-long blog series on Special Needs parenting. The other bloggers participating are women that I greatly admire so I eagerly agreed to take part. The theme for the first month was “recognizing signs”.

I did not expect to be writing about the signs of Reactive Attachment Disorder because it is hard for me to talk about. RAD is the one diagnosis that I probably struggle with the most, both because it is the most challenging and because it is one that I never imagined we would be living through.

In the adoption world, Reactive Attachment Disorder or RAD is the worst case scenario. It is the mental health diagnosis that you are warned about, but the one that you think could never happen to your family. Like many disorders, there is a spectrum with some children being more severely affected than others.

I remember watching a documentary in a College Psychology class about RAD and the girl in it having no conscience and trying repeatedly to murder her adoptive parents. RAD is the stuff nightmares are made of. It is considered to be the most severe form of childhood mental illness.

In our years as foster parents, we did take care of a few children who had been diagnosed with RAD, but it is different to know that you are the foster parent, a temporary home for that child, that you can take care of them and meet their needs but at the end of the day, if an emergency arises or if it becomes too much for you to handle, there is a social worker you can call who can step in.

When we began our journey to international adoption, we knew that the possibility existed for our child or children to have RAD, but we still didn’t think it would happen to us.

One of the reasons that we chose to adopt from Ethiopia was because we knew that children are generally highly regarded in their society, the children were well cared for in the Orphanages (unlike the horror stories you hear of in Eastern European Orphanages) and we heard that it was unlikely for these children to have issues with attachment. We were naive. There were many risk factors still present.

Any time a child is separated from their primary caregiver, moved to an Orphanage where they are one of dozens or hundreds of children and then moved to a different Orphanage, there are likely going to be attachment issues. Add in some childhood trauma and an adoption fraught with challenges and Reactive Attachment Disorder is almost a guarantee.

When we adopted from Ethiopia, we already had two biological children and three adopted children, so we were not new to parenting or to adoption. We were well versed in secure attachments and knew that in adopting older children, we would have to be actively working on attachment. We had plans in place for helping these children transition to our family and to help them attach to us. We assumed that with enough love, enough effort and enough time, we could help them heal and attach.

Even while still in Ethiopia with our kids, we could see that the challenges were much more than we had anticipated. It was obvious that they were terrified of us. They flinched or lashed out anytime we got near them. By the time we got back to Canada, we were all exhausted.

We settled into our new life at home with seven kids and began to work at helping them adjust. That meant teaching them English, getting medical attention for things like parasites and fungus and accessing play therapy. Over the months, they seemed to be settling a bit and we thought that we could see light at the end of the tunnel. That was not to be. More accurately, the tunnel is just much longer than we thought.

I don’t want to share specifics or much of a timeline because I am attempting to walk that line between helping others who are walking this road and protecting the privacy of my children. I will share a few personal things from our story further down, but the following lists are general symptoms and signs of Reactive Attachment Disorder. Not all signs will be present in all children with RAD.

In our two kids who are diagnosed with RAD, they each present quite differently and they each have signs that the other does not. Neither of them has all of these symptoms.

Signs of Reactive Attachment Disorder:

anxiety
trouble sleeping
lack of boundaries
hypervigilant
extreme dependence
acts much younger than chronological age
underdeveloped conscience, lack of remorse
inappropriate responses (laughing or smiling when something is sad)
fake, not genuine
academic struggles
difficulty showing affection
disobedient
defiant
argumentative
controlling
bullying
aversion to physical touch
tantrums or rages
sensory issues or sensory processing disorder
withdrawal
lack of eye contact
incessant chatter
not asking for help when hurt, sick or needing assistance
socially indiscriminate
manipulative (can be excellent at triangulating adults)
frequent lying
blames others for their mistakes
irresponsible
physically and verbally aggressive or abusive
mood swings
depression

Children with RAD are at higher risk for SPD, cognitive delays, malnutrition, language delays, depression, anxiety disorders, and ADHD.

Early intervention is key. Reactive Attachment Disorder does not have to be a life sentence and the chance of healthy future relationships is possible.

Our Reactive Attachment Disorder Experience:

We saw signs of RAD in our Ethiopian born kids from the beginning, but we were in denial for a long time. I believed that with enough love, we could “fix” them. One of our kids showed classic signs of “mommy shopping” from the beginning, being overly affectionate with strangers and giving her best self to those outside our family.

Our daughter was literally willing to go with anyone and still shows these boundary issues almost seven years after her adoption. She has gone into strangers’ homes, strangers’ garages and would be willing to go into a stranger’s vehicle. We always have to supervise her for this reason.

Our kids showed many other signs as well. It became obvious that our efforts towards attachment were not going as planned. Things came to a crisis point and we were finally able to get professional help for our two kids from Ethiopia who were both diagnosed with RAD, PTSD (post traumatic stress disorder) and one also diagnosed with an anxiety disorder and the other with ADHD (both things are in the list of diagnoses that children with RAD are at higher risk for).

The kids each took part with us (separately) in a year-long intensive group for kids with trauma and attachment issues. We worked in the program with a team of professionals including a psychiatrist, OT, therapists, and others to help them find some healing. We came to the agonizing decision to add medication as a piece of the therapy puzzle. Even with medication and years of therapy, the kids have significant daily challenges.

We want to help them to reach healing in their journey. On bad days, I wonder if healing is possible, but I have seen glimpses that give me reason to hope.

Hope for Reactive Attachment Disorder:

Last November, we conducted a therapy camp for five of our kids at home based on many of Karyn Purvis‘ principles and methods. For one week, we unplugged, had therapy activities and exercises scheduled every 15 minutes or so for 9 hours a day plus family connection time every other waking hour. It was intensive, exhausting, challenging, and worth every second.

We saw tremendous gains in all of our “campers” in things such as communication, problem solving, sensory issues, and self image. We also saw gains in positive attachment signs such as willingness to ask for and accept help, eye contact and giving us glimpses into who they really are.

Of everything we have tried, it has been the Karyn Purvis model that we have found the most success with. We attended her Empowered to Connect conference in 2015 in Minnesota, have bought and watched all of her 13 videos many times, read her book The Connected Child and read many of the articles she has written.

Sadly, Dr. Karyn Purvis passed away after a long battle with cancer, but her legacy in working with children from hard places lives on. You can access articles, short videos, and articles on Empowered to Connect. The videos we have found especially helpful are on the TCU website.

Join me for a free 5 email series, Little Hearts, Big Worries which will provide you with resources and hope for parenting your child.

I am pleased to have joined a fabulous group of bloggers to bring you this series on Parenting Special Needs Children. Be sure to read their stories on recognizing signs in their children.

10 Early Signs of Autism | Natural Beach Living

How to Recognize Signs of a Mood Disorder in Young Children | Every Star is Different

Recognizing the signs – Childhood Trauma | STEAM Powered Family

Recognising signs as a first time special needs parent | My Home Truths

Hemophilia, Juvenile Arthritis, and Allergies… Oh my | Grace and Green Pastures

Myths About Recognizing Developmental Delays | Life Over C’s

7 Sanity-Saving Tips if You Think Your Child has Special Needs | B-Inspired Mama

When They Say It’s Just Your Parenting | This Outnumbered Mama

Signs That Your Early Reader Has Hyperlexia | And Next Comes L

How to Deal with the Unexpected Learning Disability | Kori at Home

Forgiving Myself for Denying the Signs of Autism in My Daughter | Parenting Chaos

Ripples on a Pond: Warning Signs of Early Childhood Development Problems | 3 Dinosaurs

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A Letter to my Other Children

By Sharla Kostelyk

I just said “no” to one of you when you asked about having a friend over tonight to camp out in our backyard. I wish I could have said “yes”. That’s one of those fun childhood things that I want you to be able to do. Sometimes I push past what I think I can handle and say “yes” because the guilt of all the no’s weighs on me.

A Letter to my Other Children - "I want you to have as normal a childhood as possible. I want you to giggle and be carefree, but a carefree childhood is not something I can provide you with." Image Copyright: gorosi / 123RF Stock Photo

I want you to have as normal a childhood as possible. I want you to giggle and be carefree, but a carefree childhood is not something I can provide you with. I look at you and I wonder if we did the right thing when we added two more children to our family who had experienced trauma. That trauma now plays itself out in our kitchen and our dining room and our van and our yard. It ebbs and it flows, but it is always simmering underneath the surface, ready to explode. We are all always on edge.

Sometimes that trauma plays itself out in front of your friends and you get embarrassed. Sometimes you stop inviting other kids over because of what they might see or hear. That makes me so sad. I want you to have deep friendships and I want our house to be the place you can hang out. I wanted to be the mom who got to know all of your friends but most days, I feel like all I can give is to my own kids and there is nothing left for anyone else.

Sometimes I wonder if I ruined things for you because the version of me you get now is so different than the version of me you got before. It seems that everything in our life and our family is divided into ‘before’ and ‘after’.

The version of me you get now is almost always tired and weary and a bit beaten down. I want to say “yes” to the playdates and field trips, but I’m just so exhausted. I want to be able to plan fun outings and fun activities, but I now live in a world where everywhere I step is a minefield and I cannot predict what days will be “safe” and what days won’t be.

I want to be that mom who stayed up late decorating the birthday cakes and sat down on the floor with you playing or laughing or dreaming, but that mom is gone now and I don’t know how to get her back.

I’m sorry that sometimes the trauma gets the best of me too and I snap at you or yell at you or don’t have patience with you. I’m sorry that I don’t let you stay up late with me anymore to have pyjama parties or bake. At the end of each day, this thing we are in has taken so much out of me that I just have to turn off being a parent and have some time to myself. And I have to protect that time as if my life depends on it because it feels like it does. My sanity does anyway.

I’m sorry that you are not allowed to whistle anymore. Whistling should be fun, but it now triggers my own PTSD and so you have to miss out on whistling too.

I never wanted to put you in a position of having to hear the things you do or of jumping in to try to defend your mom and then getting in trouble because that’s not your job. I know it’s hard for you to hear and see the things you do and not say anything. I love that you want to protect me. I love that you care. But you have to let me be the parent and let yourself be the sibling.

When I see you with your earbuds in and your music turned up to drown it out, a part of me cries for your reality. I know that it is not just me who is living this. It is you too.

I wish that I could take this from you, that I could snap my fingers or pray hard enough and there would be instant healing for your brother and sister, but I can’t fix this. As a parent, you want to protect your children, to fix the hard things in their life. Not only can I not fix this for you, in a way, I’m the one who brought it into your life. The guilt of that weighs on me too.

kids at zoo

You sometimes say that I don’t know what it’s like to be you and that I don’t know how hard it is, but precious one, I do. I do. I shield you as much as I can from the worst of it, but I know that it’s hard. That’s why I try to make sure that you have some breaks from it and some times of getting to just be a kid.

Being the sibling of someone with special needs is not an easy role, but it is one that I have watched you grow into. I see that now you have more compassion with others, more patience, more resilience, more perseverance. My pride spills to overflowing when I watch you with younger children or watch you handle some of the situations you confront with grace that people twice your age would struggle with. I see how God is working these challenges to mould you and give you a heart for those who are hurting. I watch in awe as you reach out to help others and it is in those moments that I know…

Bringing these siblings into our home didn’t ruin you, it shaped you. You have seen that people that are the hardest to love are the ones who need the love most. You have reached out in love again and again even after being rejected. You have learned to stand up for others and for what is right. You are an excellent friend because you are an encourager and a listener and a giver.

You have had the privilege of being a first-hand witness to some of the tiny miracles that have happened over the years and I pray that you never forget that miracles are possible. You have seen the depth of love parents have for their children as you have seen your dad and I advocate for you and your brother and sister and never give up on them. You have seen the goodness of others as our friends and family have lifted us up during our hardest times. I hope you come to learn that often the hardest things in life are also the most worthwhile.

I love you like crazy muffins and I am so thankful for each one of you!

~Love, mom

Join me for a free 5 part email series, Little Hearts, Big Worries offering resources and hope to parents.

Finding out that our Daughter has Progressive Hearing Loss

By Sharla Kostelyk

I routinely write about the special needs of our children and the challenges and successes that come along with them, but writing about our daughter’s hearing loss has been something I have had a harder time doing. It’s been a year and a half but I still haven’t been able to put words to it. The only time I have mentioned it to my readers was when she told Santa that all she wanted for Christmas was to be able to hear.

Hearing loss is not the most severe of the special needs that our children face, yet somehow, it is the one that I have felt the most loss with. I have grieved and am still grieving.

Finding out our daughter has progressive hearing loss...what it felt like and what it has meant for our family and for her Hearing is one of those things we take for granted until it isn’t. I think in our case, it seemed particularly cruel that with all the other losses in our daughter’s life, she was losing her hearing as well.

We adopted Dancing Queen from Ethiopia when she was 4. We also adopted her older brother at the same time and although they had each other, they had lost their mother, their father, their oldest brother, their country, their language, their caregivers at two orphanages, and for the most part, their culture. They had already suffered tremendously prior to us bringing them home and we thought the worst was behind them.

As the years went on and the effects of trauma and attachment began to rear their ugly heads, it was apparent that the worst was yet to come. Dancing Queen was diagnosed with PTSD, RAD, an anxiety disorder, speech delays, and cognitive delays. Many forms of therapy followed.

In those earlier days, one of the first steps when accessing speech therapy is to have a hearing test done. Her test came back as her having some very mild hearing loss, but only in high frequencies and nothing that would affect her speech or ability to function in life. It was recommended that another hearing test be conducted in another year.

With the list of conditions that we were dealing with, the minor hearing loss was not even something that caused a blip on our radar. Fast forward a year to her next hearing test and there was a slight drop, again, only in high frequencies, but it was recommended that we get a referral to an ENT (ear, nose and throat specialist) and do some investigating.

The ENT sent us for another hearing test, this time at a clinic in the hospital and for a CT scan of her brain. Everything was structurally normal and when the hearing test was conducted, we were told that it was comparable to the one done at our local health clinic the year before, so I left there thinking that this was not an issue at all.

We would later find out that there had in fact been a drop and that if we had compared the two audiograms ourselves, we would have had red flags and been demanding answers. A difference of 10 decibels is considered normal because they allow for 5 dbs on either side for room for error. What we didn’t realize at the time was that on that hospital audiogram, every single one of the frequencies had dropped 10 and one had dropped 15. We should have been told but weren’t and there should have been a follow-up. It makes me sad to think of the time that we lost and of her having to compensate for her hearing because of this error.

Fast forward a little more than a year. I had been noticing that Dancing Queen was having a hard time hearing me. It seemed that she couldn’t hear me at all in the vehicle (I thought it was because of the background noise, but it was actually a combination of that and the fact that I wasn’t facing her so she couldn’t read my lips. She had gotten good at reading lips and faking her way through situations but we didn’t realize that yet.). I mentioned to my husband that I thought maybe her hearing was getting worse but he didn’t yet think so.

We went camping for a week that summer and when we would call her, she would never come. She would say that she hadn’t heard us, but we weren’t sure if it was her hearing or just her wanting to play longer or being distracted. We were camping with friends of ours and when I mentioned it to Cathy, she said that she had noticed it too. There were several other instances that summer that were big signs but I tried my best to ignore them. By the end of the camping trip, my husband agreed that there may be an issue.

In August, I called my close friend Shannon and told her my suspicions. Shannon’s daughter Sadie has hearing loss. She has a cochlear implant on one side and a hearing aid on the other. Shannon immediately put me in touch with the clinic they go to. I cried during that phone call because I already knew the truth.

That August, we had the audiogram done and I knew as I sat behind Dancing Queen during the test that she was going deaf. I had tears streaming down my face during the whole test as the beeps got louder and louder and she couldn’t hear them. It’s hard to describe what that felt like.

Knowing that this girl who in just 8 years had already lost so much was losing one more thing seemed unimaginable. I wanted to scream about the unfairness of it all. I didn’t want it to be true. I still don’t want it to be true.

Hearing Loss I am thankful that I didn’t have to walk the road alone. My friend Shannon was there beside me when I got the results of that hearing test. She and her Sadie were there when Dancing Queen got her hearing aids. Sadie told Dancing Queen that she didn’t need to be afraid. Sadie held Dancing Queen’s hand and Shannon held mine. I am thankful that God put her in my life, knowing that this day was coming. She helped answer so many questions for me and helped me make decisions.

hearing loss friend We still don’t know what is causing Dancing Queen’s hearing loss. Her hearing has continued to deteriorate. At her last audiogram, the hearing in her left ear had dropped significantly and her hearing aids needed to be turned up again. That was only 3 months ago and she is already having a hard time hearing even with her hearing aids on, so we will be going to have her hearing tested again. I suspect the right side has had the same dramatic drop.

I’ve been putting off booking the appointment because I don’t really want my suspicions to be confirmed. I know that me not wanting to believe it doesn’t change what is.

Hearing aids have made a huge difference though. This picture shows the look on her face the first time she was able to hear with them:

hearing aids for the first time Dancing Queen currently wears hearing aids in both of her ears and when we go out, I wear a Roger system around my neck. It has a microphone that speaks directly into her hearing aids. This enables her to hear me when I’m driving and she can’t lipread and when we are in a place where there is a lot of background noise. She has a hard time filtering out that noise, so there are certain situations that make it hard for her to hear well enough to get by.

As her hearing worsens, we will have to get hearing aids that are more and more powerful and I will need to wear the Roger system more often. Right now because her hearing has dropped again, I am sometimes even wearing it in the house.

Her speech is worsening as her hearing loss worsens, especially now that the frequencies include conversational speech frequencies. She is sometimes self-conscious about the questions we get in public, particularly about the Roger system. I tell her it’s our super special way of communicating and I make sure that I whisper “secrets” and compliments regularly into the mic. so that she feels better about it.

Dancing Queen’s hearing loss has meant many changes for our family. She can’t hear much without her hearing aids and she can’t wear them in the water or when she is sleeping, so swimming and bedtime routines have had to be adjusted. I keep a light on while I’m tucking her in because otherwise, she can’t hear when we pray together or talk about the day. I talk to her swim instructors about being sure to make eye contact with her and using gesturing and hand signals when giving explanations to her.

It has meant small differences in the way we and her siblings communicate with her and big differences in the way that I advocate for her.

I don’t know what the future holds for our Dancing Queen. We live in a world of increasing technology and I am thankful that there are hearing aids and adaptive systems that can help her. I know that being deaf does not mean that she will be limited in what she can accomplish, but it does mean that things will be more challenging for her. I hope that we are able to help her accept her hearing loss and see that in some ways, it may turn out to be a gift.

Right now, I am still trying to work through my own feelings about this new challenge in our lives so that I can better help her navigate her way through her feelings about it. When she first got her hearing aids, she went through a time of intense grieving and “why me?” questions. It was hard to support her through that because I was struggling with the same emotions myself.

A year and a half after this became a part of our story, I am slowly beginning to accept this as part of our new normal. I hope that I am able to advocate well for my daughter’s needs and to see herself as I see her, as a survivor who has overcome much more than this and who will someday inspire others with all that she has overcome.

When You Can’t Make Your Child’s Christmas Wish Come True

By Sharla Kostelyk

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I wasn’t expecting to be writing this tonight. I thought I would be posting another kids’ Christmas craft or a holiday recipe. I have pictures of our recent projects edited and ready to share, but something happened today that stopped me in my tracks.

It was just another busy Tuesday. I dropped Snuggle Puppy off at school and three of the kids went to piano lessons so that left a small window of time that I had only Dancing Queen with me. She has grown a ton in recent months and outgrown her pants so I headed to the mall with her to buy some replacements. Right by the store we needed to go into was Santa and there was no line-up to see him.

She begged me to let her go tell Santa what she wanted for Christmas. I hesitated because we needed to hurry and because I knew I wouldn’t be buying the photo package. Then I gave my head a shake and said “of course” because I knew that at 9 years old, this might well be the last year she asks me to sit on Santa’s knee. I know better than most how quickly the time goes.

She ran up and sat with Santa. I turned to ask the attendant if I was allowed to take a picture with my cell phone and that’s when I heard it.

“What I want for Christmas is to hear.”

I wasn’t prepared for it. I wasn’t expecting it. It caught me off guard and I burst into tears. You see, our daughter has progressive hearing loss. There is nothing we can do to stop it.

As parents, we want to make life easier for our kids. We want to take away the things that stack the odds against them. We want to protect them from hurts. When something is hurting our child, we want to swoop in and fix it. But some things can’t be fixed.

Our daughter is losing her hearing. This same sweet girl has already lost her first father, her first mom, her oldest brother, her first language, her country of birth, and much of her culture. I want to scream “hasn’t she lost enough?!” I still can’t believe that she is losing her hearing too.

I can’t fix it. There is nothing within my power that can grant her Christmas wish. Even if I had more money and more connections, it is a gift that cannot be purchased at any store. And it’s the only thing she wants.

What can I tell her, this girl who still believes that wishes come true? What do I tell her brother who has been praying every night for months for his sister’s hearing to be restored?

I don’t want them to stop believing in miracles because miracles do happen. I have seen miracles. With God, nothing is impossible. Nothing. And yet, I am afraid that if I continue to let them pray for this particular miracle, their faith will be shattered. It’s complicated and I don’t know if I’m walking the tightrope between reality and hope properly.

So how do you cope when you can’t make your child’s Christmas wish come true? I’m not talking about a wish for a high priced toy. I’m the kind of mom who has no problem saying no to wants like the newest or coolest gadget or gizmo, but what happens when what your child wants is something you wish you could give them but can’t?

I have a friend whose husband works out of town. Their youngest daughter’s Christmas wish this year is for a new job for her daddy so that he can be home.

What about the child who prays that their parents’ marriage will be restored? The child whose wish is for grandpa to be with them for one more Christmas? The child who ask Santa for mommy’s cancer to go away?

What about the parents who can’t afford to give their children even the most basic of necessities at Christmas or any other time of year?

I don’t have an answer for any of those wishes. I don’t even know how to respond to my daughter. The Santa today said it best. I didn’t hear his response to my daughter, but I asked her later what he had said and she said, “that would be hard to do and I’m not sure if I can but I will try my best.”

When my daughter hopped off Santa’s lap and turned to say “thank you” to him, he SIGNED “thank you” in response. The kindness of that Santa gives me hope. It reminds me that even though I don’t have all the answers, kindness matters and so does truth.

So I tell my daughter that I hope for a miracle for her hearing and we won’t give up believing that God could heal her, but that there is also a chance that this wish may not come true. But that with or without her hearing, she is immensely loved.

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