5 Things All Siblings of Special Needs Kids Need

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“You don’t have to come. I understand.” Those words hung in the air and my stomach sunk. I was going to be missing something of hers again because her sister had an appointment. I couldn’t get out of it. It was an all-day assessment at a rehabilitation hospital that we had waited many months to get the call for. And of course, it was on exactly the same day that I was supposed to be taking my middle daughter to something she had been looking forward to. I couldn’t be in two places simultaneously. I was going to choose her younger sister’s appointment. We both knew it. There was nothing fair about it. It just was.

I hate that I’ve had to disappoint my other kids. I hate that they have had a childhood that is marked by so many specialists and meetings and stress. I hate that I can’t fix this for them. But on the other hand, I love that my kids show such grace towards others because they have had to learn to be patient. I love that they understand that just because a person may be different or have additional challenges doesn’t mean they are less worthwhile. I love that I see them reaching out to help strangers and neighbours and friends because of the compassion they have learned from having a sibling with special needs.

5 things all siblings of a child with special needs want from their parents

One of the most challenging things about being the parent of children with special needs is the guilt I have about my other kids. I often feel like there just isn’t enough “me” to go around. I feel like my kids whose needs aren’t as high get less than their share. It can feel impossible to meet everyone’s needs.

Last year, I shared a letter I wrote to my “other children”. In it, I shared the feelings I have about my kids having to and getting to be siblings to children with special needs. Because on one hand, it makes their lives so much harder and yet, on the other hand, it equips them with character traits and skills that they wouldn’t otherwise have.

5 things all kids with siblings who have challenges need from their parents:

Honesty

Acknowledge that their sibling’s special needs affect them too. Talk openly and honestly about the ways that they are impacted. There will be times that you will miss their games or be late to their recitals or not be able to tuck them in because of the needs of their sibling. This is disappointing for them. Of course. Acknowledge that.

Some parents think that they are protecting their kids by not sharing with them the truth of a situation, whether that be a sibling’s diagnosis or a sibling’s prognosis or other pertinent information. The parent’s intentions to shield a child are admirable, but the outcome can be that it increases worry and fear.

It is so important to give accurate (but age appropriate) information. Your child likely has worries that they do not want to share with you as they do not want to add to your burden. They may imagine things that are far worse than the reality. It is common for children to do this when they feel that something is being kept from them. They fill in the blanks with the worst case scenario. By providing factual information and letting them know that you are available to answer any questions they may have at that time or in the future, you can help alleviate their worst fears.

Check-in with them about their feelings

Just as parents of special needs children often need time to grieve, siblings need to grieve in their own ways too. Even if they are the younger sibling and have never experienced life any other way, seeing their friends’ lives may cause comparison and feelings of grief as they age. They may realize how much they are missing out on.

Teach them how to talk about their feelings. Do regular check-ins to see how they are coping. This doesn’t have to be complicated. Choose something simple like talking at tuck-in time or when you are in the car together or while they help you do dishes.

One of the traps that parents can fall into is minimizing the stress or difficulties their child faces because in comparison with the challenges of their special needs sibling, they can seem small. But issues with friends, decisions to make, bullying, schoolwork, and other hardships in childhood are very real and deserve to be acknowledged.

Encouragement and Appreciation

It’s hard to find that balance. On the one hand, you don’t want your child to resent their sibling with special needs, so you don’t want to rely on their help too much or have them grow up far too soon. On the other hand, you don’t want to rob them of the opportunity to grow in character and skill from all they have to learn from their sibling and their sibling’s challenges. It’s a fine line to balance, but an important one. One of the ways you can best balance it is to be sure to apply praise and appreciation liberally.

Be sure to also encourage them in their own talents and uniqueness. Show appreciation for who they are and what they contribute to your family. Write short thank you notes on post-its and stick them on their door or pillow. I still stand by my view that the 2 words that can have the biggest effect on your family are “I appreciate”.

Time

The thing you already don’t have enough of is time. I know it. Five of my kids have special needs. Time is already stretched thin. You have to be creative to carve out time with your other child (or children). Make the most of the time you have with them. Here are a few suggestions:

let them snuggle with you in your bed early in the morning
if just the two of you are in the car, swing by a drive-thru and pick up ice cream or a special treat and giggle about having ice cream for breakfast (or lunch or supper or late at night)
let that child stay up late one night a week or a month for some one-on-one time
have a special ritual like a secret handshake or line dance or signal
wake them up in the middle of the night to watch the stars or see the Northern Lights – I once woke my daughter up to see the beautiful Northern Lights and when we got outside, they were gone! We laughed and laughed and it’s such a special memory!
take the long way home just to finish singing the song
go for a walk with them
let them see that they are a priority by putting your phone down and making eye contact to ask about their day
say “yes” more often
eat supper as a family (if it’s at all possible)
have a dance party in the kitchen while you clean up
read to them (even to older kids) – It once took a year for us to get through a book because it didn’t happen often, but it was still worth the effort.

A Childhood

Of course their childhood will be altered and affected and may not look like what you imagined, but let them be kids. Give them breaks from the stress or chaos of home. If there is a grandparent or special friend that they can spend time with, facilitate them having regular breaks and being able to look forward to that time away without guilt.

While you may not be able to give them a childhood full of big events, trips, planned moments, complicated crafts, and cool birthday parties, you can give them small moments of special memories. Grab onto the opportunities that present themselves. Be silly. Be spontaneous. Dance in the rain. Let them stay up late once or twice a year for a special pyjama movie night. Sing in the car. Make up the songs. Invent a secret handshake.

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Filed Under: Special Needs Parenting

Tips and Tales from a Reformed Anti-Labeller

By Sharla Kostelyk 2 Comments

(This post may contain affiliate links. For more information, see my disclosure policy.)

Let me paint a picture for you. It was the year we put our “twins” in preschool. They were three and a half years old and we had a new baby so I decided to have them go to preschool a few afternoons a week to give me some extra time to homeschool our older kids. It all seemed like such a smart plan until the phone call from the preschool teacher.

But before I get to that, there’s something you should know about me. I was that mom, you may know the one. Not only was I determined not to put a label on my child, I was also not going to have her officially diagnosed. No one was going to put my daughter in a box!

We knew that given our daughter’s prenatal history, she likely had FASD (Fetal Alcohol Spectrum Disorder) and we strongly suspected that she also had ADHD, but I had no intention of having her assessed. I didn’t want her to go through her life being judged because of her label. I wanted people to get to know my precious girl for who she was, not by a series of letters set out to define her.

The day the preschool teacher called was the first crack in my preconception about labels and diagnoses. She was a kind and experienced educator who had been teaching preschool for over 30 years. She began by telling me what a delight Einstein was to have in the class and how he was settling well into the routines there.

She then asked if there was anything about Miss Optimism that she should be aware of. I paused, unsure of what to say. She went on to explain that Miss Optimism was having many challenges in class and it was quite disruptive. She said that in her years of experience, she felt that there was likely something going on beyond just her being an active child.

I explained that it was possible that there were reasons behind her behaviour but that I had decided against pursuing a diagnosis and was strongly against labelling her. She patiently explained to me some of the positives that she had seen in her career of having a child diagnosed and invited me to come in the next day to observe the class.

The next afternoon, I stood outside the glass walls of the preschool. I knew my daughter well and expected to see her being more active than most of the kids in the class, but was surprised by how extreme it was. I observed dozens of children following the routine, hanging their backpacks and coats up and heading to sit on their chairs.

My daughter spinning and spinning, throwing her backpack in circles, accidentally hitting another child with it in the process. My daughter rolling around on the floor while the rest of the students sat in their chairs. My daughter lying under the table at snack time licking the floor while the other kids sat around the table eating quietly. My daughter repeatedly getting up during story time, an aide gently tapping her shoulder cuing her to sit down again until finally, my daughter rolled away from the aide’s reach and ran off to one of the play stations.

My daughter licking other kids. My daughter chowing down on glitter. My daughter climbing up on everything in sight. My daughter making a beeline for the exit. During circle time, my daughter jumping inside the circle and busting a move while all the other kids did what they were supposed to be doing. My daughter disrupting the class. My daughter being disregulated. My daughter struggling.

Watching that scene broke my heart.

Afterwards, the teacher suggested that I fill out the papers to have my daughter assessed. She explained that if we had a diagnosis, instead of being angry and frustrated with my daughter, others would be compassionate towards her and be able to know what strategies would be effective for her. We began the road towards getting a diagnosis for her.

We got the diagnoses we expected, but we also got an additional diagnosis. Miss Optimism was also diagnosed with Sensory Processing Disorder, something we had never heard of before. That started us down a path of being able to find real solutions for her that worked. Her life improved dramatically. Our home became more peaceful.

If you are resistant to having your child diagnosed or labelled, I want to share with you some important things to consider.

Your child doesn’t wear the label on their forehead.

After your child receives a diagnosis, that is held in confidence between the person who did the assessment whether it be a doctor or psychiatrist or other professional and yourself. You choose who has access to this information. They may encourage you to share this information with your child’s school, but ultimately, it is your decision who knows and who doesn’t.

While I share my children’s diagnosis with some people that I deem appropriate such as therapists, certain people in the school and their main doctor, I don’t necessarily share the diagnosis with other doctors, coaches and teachers.

An example would be that if I take my one child in to get stitches, the emergency room doctor does not need to know that they have ADHD but if I take another one of my kids in to get stitches and they are completely hysterical, it is relevant and pertinent information for that emergency room physician to be told about their PTSD and sensory needs.

I decide who to tell and how much to tell on a case-by-case, child-by-child situation. Since five of my kids have a variety of special needs and diagnoses, I’ve had a lot of practise in this area and I think I do a pretty good job of navigating it well most of the time.

Another important thing to note here is that as your child gets older, they can and should be part of the decision as to who and how much to tell regarding their diagnosis.

Labelling opens door.

Once you have a label for your child, there are avenues available to you that otherwise wouldn’t be. There may be support groups (for you or your child), respite programs, research studies, trainings, effective medications, and relevant programs that are suddenly available for you and your child to access.

Labelling can lead to funding.

Depending on where you live and the type of insurance you have, having a firm diagnosis can mean funding for your child or even for your family. Many school districts require a diagnosis before you can access services such as an aide and assistive technology.

Our youngest daughter has a full time aide in school as well as access to assistive technology for her hearing loss. She also gets sensory breaks, is being seen by speech language pathology through the school and has a team of professionals such as an educational audiologist advocating for her and working with her.

Where we live, families of children with certain disabilities are able to access funding for respite, sibling care during appointments, travel costs associated with appointments, and even in some circumstances, medication. There can also be tax breaks depending on your country and the level of your child’s disability.

Labelling can lead to answers.

Once you have a definitive diagnosis for your child, you can begin to research solutions, therapies and treatments. You can find the right professionals to work with your child.

I like having answers. I always research as much as I can after one of our kids receives a new diagnosis. I feel better knowing as much as I can so that I can find ways to help them reach their fullest possible potential despite the obstacles in their way.

Labelling can lead to support.

While finding an accurate diagnosis can help your child to find the support and programs that they need, it can also help you find the support that you need. You can seek out other parents who are walking the same road as you are. There is nothing in the world that is better for the parent of a child with special needs than to find that “me too” moment.

To label or not to label?

Your child cannot be defined by a single diagnosis. Their diagnosis is only a small part of who they are, but it is a piece of who they are. While there continues to be stigma with some diagnoses, especially those pertaining to mental health, you as the parent have ultimate control over who you tell and how much you tell them.

When I share my child’s diagnosis with someone, I usually also include some tidbits about who they are as a person. I like them to get a more well-rounded picture of who my child is. I recently filled out an IEP form for my youngest daughter and under the question “Is there anything else you feel that it is important for us to know?”, I wrote “she loves to dance”!

While ultimately, the decision to search out a diagnosis for your child is a very personal one, I chose to share my experience with it in the hopes that I can make the road easier for another family. I wish I had sought out assessments for all of my children who had challenges years sooner than I actually did.

Some other articles that you may find helpful on this topic:

A Label by Any Other Name: One Teacher’s View of Diagnosing a Child

6 Reasons to Celebrate an Autism Diagnosis

Labels Don’t Define: They Enable

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

Filed Under: Special Needs Parenting

Is My Child Having a Sensory Meltdown?

By Sharla Kostelyk 1 Comment

(This post may contain affiliate links. For more information, see my disclosure policy.)

Maybe you’ve been there. When it comes to sensory meltdowns, I’ve been present for my fair share. I’m taken back to one particular episode my son was having. All the kids and I were at the convenience store waiting in line to pay for our gas fill-up and the Slurpees we had in our hands and he was having what appeared to everyone around us to be a tantrum. He was on the floor of the store, kicking and screaming and I wasn’t sure what to do with the Slurpees we were holding. I knew I had to get him out of that crowded store, but there were people ahead of us and people behind us and then, it happened…

“Isn’t your son too old to be having a tantrum? I never would have let my kids get away with that at his age.”

A lady who was a few people behind us in line piped up loudly to no one in particular. I wished the floor would open beneath me and swallow me up. I wish I could tell you that I turned to her assertively and told her that my ten year old was most certainly not having a tantrum and that his response was neither a reflection on him or on my parenting or that I had calmly handed her a Sensory Meltdown Awareness card, but my response was to turn beet red and stare straight ahead while I prayed for the line to move more quickly. After we paid, I got my son and other kids out of there as fast as I possibly could.

Sensory Meltdowns: Causes, Prevention, Signs, and Strategies. If you're parenting a child who has meltdowns, you have to read this! I wish that back then I had had the language and confidence to be able to turn to that lady and tell her that my son was not having a tantrum. That he was having a neurological response that caused a fight or flight reaction in his brain. That he needed compassion and help instead of judgment and condemnation.

What is a sensory meltdown?

A sensory meltdown is a fight, flight or freeze response to sensory overload. It is often mistaken for a tantrum or misbehaviour.

The main way to be able to tell the difference between a tantrum and a sensory meltdown is that tantrums have a purpose. They are designed to elicit a certain response or outcome.

Sensory meltdowns are a reaction to stimuli or something in the environment and are usually beyond the child’s control. A child will stop a tantrum when they get the desired response or outcome, but a sensory meltdown will not stop just by “giving in” to the child.

Another difference between tantrums and sensory meltdowns is that tantrums are often for attention whereas the last thing a child having a sensory meltdown wants is more attention.

Common causes of sensory meltdowns:

sensory overload
sensory underload (not really a word!), meaning seeking sensory stimuli
being in a new or challenging situation
change in routine
difficulty with transitions
inability to accurately communicate
lack of sleep
hunger or poor nutrition
thirst
dysregulation

How to respond to a sensory meltdown:

Control your own response – remember that your child is having a neurological response. You cannot help your child calm down if you are not calm yourself.

Talk as little as possible. Once your child is having a fight, flight, freeze response, their ability to access the part of the brain that processed language is essentially shut down. What works best is to say the say thing repetitively in a very calm, soft voice such as “let’s breathe”.

Remove the child from the environment to a place with very little sensory stimuli.

If possible, provide a sensory area for your child to go to with calming music, a soft or weighted blanket, noise cancelling headphones, chewelry, fidgets, a vibrating palm massager, and low lighting.

Use a calm down kit. Be sure to have practised while your child is calm so that the items and techniques will be familiar.

Help them focus on regulating their breathing. Blowing bubbles, blowing a pinwheel or placing their hand on their stomach to feel it rise and fall are good techniques to try.

What does a sensory meltdown look like?

Each child is different and no two meltdowns will look exactly the same even from the same child. Much of the sensory meltdown is due to a fight, flight or freeze response so that will determine some of what you see. Here are some of the things you might see in a sensory meltdown:

running away
whining
hiding
avoiding eye contact
curling up in the fetal position
covering their eyes or ears
screaming
crying
hitting
punching
pushing
biting
spitting
yawning
shutting down, not speaking, not moving

Preventing sensory meltdowns before they start:

While certainly not all sensory meltdowns can be prevented, there are things you can do to reduce the intensity and frequency of them.

Ensure that your child is always well hydrated by keeping your child’s water bottle filled and reminding them to drink from it often.

Provide healthy snacks often throughout the day.

Identify and avoid your child’s sensory triggers. As an example, if you know that your child is triggered by loud noises, use noise cancelling headphones for places that might be an issue or avoid times or locations where it may be too noisy or where sudden, loud sounds may occur. Keeping a sensory triggers log is crucial and can provide you with so much information. There is a Sensory Triggers Log included in the More Calm in the Chaos printable planner.

Be sure that your child is getting sufficient sleep. Being overtired contributes to meltdowns. If they are having a hard time falling asleep or staying asleep, you may want to try these sensory sleep solutions.

Teach your child techniques for calming and for self-regulation. I find that having an anti-anxety kit made specifically for your child and helping them practise with it is very effective for this.

Work on giving them an emotional vocabulary so that they can express their feelings more easily.

Ensure that your child is regularly accessing sensory activities that give them sensory input for all sensory systems. Heavy work activities are especially important.

Carry a small sensory toolkit with you with items such as sensory balls (you can easily make your own) and small fidgets.

Teach calming breathing techniques.

Use social stories.

Be sure to include some routines each day that your child can count on.

Give lots of lead-up and warning before transition times. Transition times are particularly difficult and are often the source of meltdowns if not properly handled.

These Sensory Meltdown Awareness Cards are perfect for handing out to increase understanding and cut back on judgment in public.

Looking for more help in parenting a child with sensory processing disorder? Join me for a free 5 part email series Sensory Solutions and Activities and get your Sensory System Behaviours Easy Reference Cards.

Sleep Solutions for Children with Sensory Needs

What Does Behaviour Have to do with Sensory Systems?

Filed Under: Sensory, Special Needs Parenting

The Busy Mom’s Guide to Juggling Multiple Appointments

By Sharla Kostelyk 3 Comments

(This post may contain affiliate links. For more information, see my disclosure policy.)

Running around to appointments is a reality for all moms. There’s the dentist, the paediatrician, the annual optometry check-up for each of the kids. For moms who have children with special needs, those appointments are multiplied at least ten fold. Occupational therapist, speech therapist, physical therapist, psychologist, psychiatrist, medical specialists, geneticists, social skills classes, just to mention a few, all make for a very busy and potentially chaotic schedule.

The Busy Mom's Guide to Juggling Multiple Appointments As the mom of seven kids and with five of them having special needs, I have learned a lot about juggling appointments with life. I have also found some secrets that have made my life so much easier. I hope in sharing them with you, I can help you save a bit of sanity and a lot of time!

These tips will make juggling multiple appointments and errands and classes and life run much more smoothly:

Book the appointments for first thing in the morning. This will ensure that you will get in right on time and there won’t be any waiting. This tip alone will save you so much time!
Ask if it’s possible for them to do their appointment confirmations via text or email. It used to feel like I spent as much time on the phone confirming the appointments as I did actually making the appointments in the first place. Since I switched to having them text or email me to confirm, it has saved me time and frustration.
Have a designated appointment day every week. I have a set day that I leave open for appointments and running errands. I know that I will be out that day, so it’s easy to plan everything. In my life, one day isn’t enough for all the appointments, but it helps.
Batch book. Set aside one time to book all the appointments for the month. This not only saves time, it saves mental energy because you get it all done in one sitting.
Program all the relevant phone numbers into your smart phone (if you have one). Having easy access to the numbers makes it that much easier. I’ve even been known to batch book appointments (see #4) while sitting waiting at an appointment.
Get to know the receptionists. Be extra kind to them. Bring chocolate. I am not kidding. The receptionist is the gate-keeper and if you want those early morning time slots or to be called first when they have a cancellation or to be given grace if you show up late to an appointment because another child’s appointment ran late, be extremely kind to the receptionists.
Location, location! Try to find specialists who are on the same side of the city so that you can book appointments on the same day and not have as much travel time.
Find specialists who are willing to come to your home. People are always shocked to hear this, but it is possible to find trained professionals in many specialities who will come right into your home. Not only will this save you time, your child will feel more comfortable and may do better. We did speech therapy for two of our daughters over Skype from right in our house.
Input the appointments into multiple calendars. If I book an appointment in person, I put it into the calendar in my phone right there and transcribe it onto the paper calendar once I get home. If I book over the phone, I write it on my paper calendar and then transfer it into my phone calendar. Having the appointments in multiple calendars increases the chances you will remember. Using technology, you can also set up email reminders and alarms for yourself.
Take pictures of important documents. My trick is that I take a picture of important papers so that even if I forget the originals at home (which I’ve been known to do), I can still show the picture of them at the appointment. Examples of things that I take pictures of: dental x-rays, regular x-rays, medical test results, diagnosis letters, audiograms, and prescriptions.

I hope this list of tips and tricks will help streamline your appointments and make your life as a busy mom just a little bit easier. You can also read my tips for surviving waiting rooms with kids for ideas for once you’re actually at the appointments.

For more helpful tips for parenting children with special needs, join me for a free 5 part email series, Little Hearts, Big Worries offering resources and hope for parents.