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5 Things All Siblings of Special Needs Kids Need

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

“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.

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

Space Sensory Activities

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

Learning about outer space is fascinating for kids (and adults) of all ages. These space sensory activities are a great way to supplement a unit on the solar system or just to inspire individual discovery while engaging all the senses.These space sensory activities are a great way to supplement a unit on the solar system or just to inspire individual discovery while engaging all the senses.

Space Sensory Activities

Weighted Space Sensory Bottle from here on The Chaos and The Clutter

Glow-in-the-Dark Solar System Sensory Bin from here on The Chaos and The Clutter

Space Sensory Bin from Sugar, Spice and Glitter

Solar System Activities for Kids – Hands-on Planet Fun! from The Natural Homeschool

Galaxy Sensory Bag from Views from a Stepstool

Space Playdough Mats over at PreKinders

Space Themed Sensory Tray from Learning and Exploring Through Play

Phases of the Moon Playdough Tray at Living Montessori Now

Galaxy Calm Down Bottle from Preschool Inspirations

These space sensory activities are a great way to supplement a unit on the solar system or just to inspire individual discovery while engaging all the senses.

Outer Space Facts and Fun Activities! from The Natural Homeschool

Outer Space Playdough at I Can Teach My Child

Moon Sand Space Sensory Play Recipe from Little Bins for Little Hands

Outer Space Playdough Invitation from Fantastic Fun and Learning

Galaxy Slime from Two-Daloo

Outer Space Discover Bin from Craftulate

Space Theme Sensory Bin from Pre-K Pages (not pictured)

Our Space Explorer Adventure from The Natural Homeschool

This space light adds a fantastic sensory element to any room and would be perfect for a calm down area or sensory room.


For more hands-on sensory activity ideas, join me for a free 5 part email series Sensory Solutions and Activities and get your Sensory System Behaviours Easy Reference Cards.

Tips and Tales from a Reformed Anti-Labeller

(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.

Calming Lavender Sensory Activities

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

Sensory activities don’t always mean high-energy, fast-faced or messy activities. Some sensory activities help to calm children and bring about peace and calm to their little hearts. Lavender is a calming scent and can provide more grounding to a child who is struggling with anxiety or who is having a hard time self-regulating.In this post, we share some wonderful  Calming Lavender Sensory Activities that are sure to hit the spot!

Calming Lavender Sensory Activities

Calming Lavender Scented Bubble Recipe from here at The Chaos and The Clutter

Calming Lavender Playdough from here at The Chaos and The Clutter (not pictured)

Lavender Scented Beans for Sensory Play from And Next Comes L

Calming Lavender Sensory Bin from here at The Chaos and The Clutter

Natural Lavender Scented Rice from The Imagination Tree

Lavender Scented Slime from And Next Comes L

Natural Lavender Play Dough Recipe from Natural Beach Living

In this post, we share some wonderful  Calming Lavender Sensory Activities that are sure to hit the spot!

More Calming Activities

Lavender Scented Sensory Paint at The Preschool Toolbox

Lavender Soap Foam from And Next Comes L

Calming Lavender Water Bin for Sensory Play from Frogs, Snails and Puppy Dog Tail (not pictured)

Lavender and Glitter Sensory Salt at The Imagination Tree

Lavender Waterbead Sensory Bin from The OT Toolbox (not pictured)

Soothing Lavender Playdough Recipe at B-Inspired Mama (not pictured)

Lavender Epsom Salt Writing Tray from And Next Comes L

Lavender Scented Cloud Dough Recipe from The Imagination Tree

Calming Lavender Bath for Kids at Frogs, Snails and Puppy Dog Tail (not pictured)

If you’re looking for more calming sensory activities, join me for a free 5 part email series Sensory Solutions and Activities and get your Sensory System Behaviours Easy Reference Cards.