The Chaos and the Clutter

Special Needs Parenting

Money Saving Sensory Solutions

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Equipping your home to adapt to a child with sensory needs can be expensive. I was astonished to find just how expensive some of the sensory tools were. Five of our kids have Sensory Processing Disorder so the search for sensory solutions that wouldn’t break the bank is a journey I have been on for many years now. I have managed to come up with a lot of low cost options that work just as well as the items that are sold by specialty stores for a fraction of the cost.

Money Saving Sensory Solutions

Here are some of the items we have adapted or found a lower cost solution for:

Weighted vests, capes or clothing

Many children have a much easier time regulating themselves when they are wearing weighted vests or clothing. Sewing your own may save money. I don’t know how to sew though.

If you are like me and don’t sew, you can buy a vest with pockets such as a fly fishing vest and add weights to the pockets.

Weighted neck rolls can be as effective for some children as weighted capes are and are usually much less money.

For some of my kids, wearing very tight fitting outfits underneath their clothing is as effective, if not more effective than weighted clothing. We accomplish this by buying gymnastics suits that are a few sizes too small and having them wear them under their regular clothes. In this way, they still get the feeling of the extra pressure. Gymnastics leotards that go down to the mid-thigh (biketards) and/or have sleeves are what we’ve found to work the best.

You may be able to find second hand gymnastics outfits online, in consignment stores or from friends whose kids have outgrown them. As with all things sensory, it’s best if you can have your child try it on before buying. Avoid things with itchy fabrics like glitter or sequins.

Fidget toys and chewelry

Actual sensory fidget toys are ridiculously expensive! This may sound like the wackiest thing ever, but pet toys can make excellent fidget toys. They are often rich in texture and durability and they are a fraction of the cost of fidget toys!
Obviously, I am recommending that you buy new toys from the pet store or online for your child, not have them play with your dog’s toy!

We make our own sensory balls for pennies. I have full instructions for making your own here.

Create Your Own Sensory Balls (for pennies each)Knobby balls are fairly inexpensive and can be used as fidget toys or for sensory activities.

Other low cost things that work for fidget toys include playdough (this recipe for homemade Lavender Scented Playdough is calming as well), silly putty (you can make your own easily), pencil toppers or pencil grips, sponges (from the Dollar store!), ribbons, stones, beads (also from the Dollar store), rubber band balls, and baby toys.

Lanyards can double as chewlery and are much less expensive. My kids also like using those coil keychains that are often given away by companies at Trade Fairs as bracelets that they can chew on.

One of my readers suggested buying teething beads in the baby section and stringing them onto a pretty ribbon to make a necklace (homemade chewlry).

Seat aids

Some of our kids have Movin’ Sit cushions but they are a bit pricey. Another solution is to buy therabands (exercise bands) and put them around the legs of the chair or desk. An even cheaper solution is to do this with scraps of stretchy fabric or old nylons. This will provide your child with sensory feedback when they swing their legs.

Bean bag chairs can be another solution for sitting but they also tend to be a bit pricey.

Textured disks like the kind you can buy at Ikea make good seat disks.

You can fill a large sock with rice to make a weighted lap snake. Those microwaveable heat packs also make good weighted lap pads. These can help with staying seated and feeling more regulated while seated.

Weighted Blankets

Weighted blankets are expensive. There’s really no way to sugar coat it. You can make your own if you know how to sew or you can make a very heavy quilt or blanket. My aunt made some heavy blankets for our kids using old jeans. The denim is very heavy (and free if you collect ripped jeans from people you know).

If you don’t know how to sew (and don’t have an aunt who will make you blankets out of denim!), you can also try buying heavy down comforters when they go on sale.

If you do decide to buy a weighted blanket, be sure to let your child try it out before you spend the money on it as some kids don’t like them. Only two of our kids with Sensory Processing Disorder like them but two ones that do, love them! I was able to purchase our weighted blankets from Innovaid and were allowed to try them first to ensure that the kids would like them.

There is also an excellent tutorial on how to make your own stretchy sensory sheet.

Larger sensory items

You can save so much money by making your own things from items you can buy at hardware stores, fabric stores and Dollar stores. Examples include such things as making your own hammock, platform swing, tire swing, rock climbing wall, ball pit (you can also make a simpler one using a blow up pool or playpen and balls or cut up pool noodles), parachute, and lycra swings. (Click on each of the words to be taken to a tutorial for how to make these yourself.) You can make a crash pad by filling a duvet cover with foam pieces.

There are some things that are almost essential to have when you have a child with sensory needs but that just are expensive. These include such things as trampolines or mini trampolines and the Hop Bouncer. For items such as these, my best suggestion is to check Kijiji, Craigslist, eBay, Freecycle, the local paper, swap and buy and sell groups online, and garage sales. This should make the prices much more affordable and enable you to save for them and pay cash instead of going into debt to buy new ones.

Other sensory solutions

You can make your own sensory tunnel or tube (often called a Sensory Sock) using stretchy fabric for a fraction of the cost of buying it.

Use old couch cushions for compression sandwiches.

Create your own sensory bins, sensory boards and sensory bottles.

Ikea has some great sensory solutions that are quite inexpensive such as a swing and rings that can be hung indoors, their egg swivel chair, tunnels and small tents, a great hanging chair that swings as well as surrounds them like a small hammock (it’s called the EKORRE), and items such as textured cushions, and soft lights.

For the anxiety often associated with SPD or ASD, I highly recommend my anti-anxiety kit for kids. It works so well with our kids and can be customized to what works with your own child. You can make yours very inexpensively.

Create an Anti-Anxiety Kit for Your Child including free printable relaxation prompts

Instead of buying expensive noise blocking headphones, try inexpensive ear plugs, cotton or ear muffs.

Drums can be a good outlet for kids with sensory needs but can be made using household items like ice cream pails, pots and pans, and empty coffee tins.

You may also be interested in reading:

Surviving Public Bathrooms with a Child with Sensory Issues

Must Haves for Kids with Sensory Needs

Resources to Teach Kids About Emotions and How to Manage Them

What money saving sensory solutions have you found?

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

Making the Choice to Medicate Your Child

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This is an article that is heavy for me to write and it is also scary for me to write. I expect that there may be negative comments and I may even lose readers. I’m not happy about those possibilities, but I’m prepared for them. I’m writing this in case there is even one parent out there who either is struggling to make this decision or who already has and is guilt-ridden with their choice. If I help one of those parents in sharing our story, the negative consequences will be worth it.

Making the Choice to Medicate Your Child

If your child has diabetes that needs to be controlled by insulin, that choice is an obvious one. Our oldest daughter has a lung disease. The medication she needs has side effects, but it keeps her alive , so that choice has never been a difficult one.

But what about if the medication your child needs isn’t to save their life? What about if the medication is for behaviour or mental health issues? Then, the decision isn’t as obvious and it can be gut wrenching.

I’m choosing to share parts of our story but I’m also choosing to leave out the worst details, details those of you without children like mine cannot fathom, things you’ve likely never considered. Leaving out those details is a bit of a catch 22. If I shared those details with you, there is little doubt that you would better understand my position and be supportive. But if I shared those details, I would be sharing private things about one or more of my children that could follow them around for the rest of their life because the internet is wide-reaching. I’m choosing a bit of a middle ground…sharing enough that those who do have children like mine will likely be able to read between the lines and feel understood but leaving out enough to protect my kids.

Our story begins many years ago with the birth of our two relatively healthy boys and then ventures down our path to the adoption of five more children, all of whom have special needs. Our oldest boys had no special needs other than one having dyslexia.

At that point, medicating a child wasn’t something I considered except perhaps to silently judge the parents who chose Ritalin and other such “needless” and “overprescribed” medications. It was easy for me to judge because I had never been in those parent’s shoes.

Upon the diagnosis of some of our adopted children and the onset of difficult behaviours related to their diagnoses which included such things as SPD (sensory processing disorder), ADHD, Aspergers, and a neurodevelopmental disorder (FASD), suddenly medicating for behaviours was something we were being asked to consider.

I saw medication as a last resort and even when doctors suggested that we might want to consider it for one of our kids, ultimately, we decided against it, reasoning that we could try other interventions. Thanks to educating ourselves on sensory issues, making changes to their environment and homeschooling, we were able to avoid medication. I felt quite proud that we weren’t one of “those families”.

Fast forward a few years to when our son’s Aspergers traits were becoming more pronounced…he was struggling and so were we. I still saw medication as a last resort and researched other ideas. We chose to try putting him on a gluten free diet and the results have been remarkable! Once again, we were able to avoid medicating.

Another one of our children was beginning to display challenging behaviours that took over our home life. This child was eventually diagnosed with PTSD (post traumatic stress disorder), RAD (reactive attachment disorder) and anxiety disorder. By the time we had a diagnosis and a team of specialists, we were at the end of ourselves and so was she. I couldn’t even recognize the child she had become. She never smiled anymore or got any enjoyment out of anything.

Her anxiety was so high that she was barely able to function in day to day tasks and was completely unable to access her brain for learning. The behaviours were holding our family hostage. We were all suffering. She was suffering. It was a terrible feeling to see one of my kids in so much pain and to be unable to help her. Nothing we tried worked. Therapy made things worse.

I got to the point where I was willing to medicate her. The Husband wasn’t yet in agreement. I resorted to videotaping a 20 minute period of what the days with her were really like to show only to him. Once he saw it, he was on board with doing whatever it took to get her the help she needed. Even once we were both on the same page, it still wasn’t easy to follow through with it.

I second guessed myself a thousand times. We started with just giving her something to help her sleep, hoping that some solid sleep would help. It wasn’t enough. Within a month of that, she was on a total of 3 medications. The first time I went to the pharmacy to pick them up, I felt sick. I was embarrassed. I worried that the pharmacist would judge us for putting a child so young on those types of medications. (As an aside, I have felt judgement from some of the pharmacists at times but I tell myself that they don’t know her story or ours and that helps me.)

I worried about side effects. I worried about her never being able to get off the medications. I worried that by starting when she was so young, we would have to keep increasing the doses. I worried that it was dangerous. I worried that we were doing the wrong thing.

After I gave her her pills for the first time, I went to my room and cried. I felt like I had failed. Failed her. Failed at being a mom.

And then, three days later, I saw her smile. The day after that, I was in the kitchen and I heard an unfamiliar sound in the homeschool room. I rushed around the corner, holding my breath, hoping it was what I thought it was. It was. It was her giggle. It had been eight months since I had heard her laugh. She was back. Our daughter was back!

It’s been a little over a year since we made the decision to medicate our daughter. We haven’t had to increase any of the medications. She has had the side effect of weight gain which I worry will become a self-esteem issue for her.

Our goal is to be able to teach her through education and therapy how to control her anxiety and behaviour issues on her own and eventually come off the medication.

We still do whatever we can using natural means such as the anti-anxiety kit I created for her which includes some natural remedies and by creating sensory outlets for her such as sensory bins. We also took her through a year long treatment program for attachment and trauma and she is in ongoing therapy.

Making the choice to medicate your child for behaviour or mental health issues is not one that should be taken lightly. You will want to ask the doctor questions such as:

  • What are the potential side effects?
  • How soon can we expect to see results? What results should we expect?
  • What is the part of the treatment plan that does not include medication?
  • Is there a goal for weaning off the medication at some point?
  • Is the medication addictive?
  • How often will dosage be reevaluated?
  • Are there other medications or foods that need to be avoided while on this medication?
  • What is the cost and is the medication covered by insurance?

I would also highly advise that you ensure that you and your spouse are on the same page when it comes to making this decision. Have your spouse attend important appointments with you pertaining to your child if possible so that they can get a clearer picture and be able to participate in making an informed decision.

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

Surviving Public Bathrooms with a Child with Sensory Issues

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For the parents of a child with sensory needs, a trip to a public restroom is like walking into a minefield. The hand dryers that sounds like jet engines, the automatic flush toilets that are equally as loud, the automatic sinks, the paper towel dispensers…can all make for a very difficult experience. I’m guessing that whoever designed these places did not have a child with sensory issues!

6 Tips to Surviving Public Bathrooms with a Child with Sensory Issues

For parents of children with SPD (sensory processing disorder) or even kids who just have sensory issues, the fear of those gosh-darn-it-just-plain-awful public toilets are enough to have you avoiding outings altogether.

For children who are sensory avoidant (sensory defensive), these bathrooms are a nightmare. With the loud noises, the strong wind that comes out of the hand dryers that literally moves the skin like some kind of futuristic science experiment, the unexpected surprises thanks to so many things being automated, the potpourri of smells, and the glare of the lights, it’s no wonder for them they can be a very scary place.

For children who are sensory seeking, these bathrooms have the opposite effect. They are like a playground of sensory stimulation with their sights and sounds and smells! In these cases, the trips to the bathroom are more of a nightmare for the parents than for the child.

Lucky me (!), I have kids with both types of issues so those trips to restrooms in malls, airports, restaurants, recreation centres, theatres, grocery stores, museums, and other locations are something I used to dread. Over time, I have gathered some tricks and secrets that have made this less of a challenge for our family.

public bathroom tips for children with sensory issues

Here are some tips that I’ve acquired over the years to make these trips to public washrooms a bit more bearable:

Avoid them when possible

This may seem like an obvious solution, but it is a highly effective one. Whenever possible, avoid using the restroom in public buildings. This means not only reminding all of your children to use the washroom before you leave home but also being sure to use it yourself just before leaving. There is no way to ensure that you will never have to use a public restroom, but using the “facilities” at home before going out will at the very least cut back the amount of times you have to face the public ones.

Covering the automatic flush sensor

Carry small stickers or post it notes with you in your purse to cover the automatic flush sensor. This way, your child won’t have to fear the terrible noise going off without warning and can pee in peace!

Familiarity helps

Whenever possible, visit public restrooms that are familiar to you and your child. This will make it easier both because it is familiar and because you can both be better prepared and know what to expect. It’s not always a possibility but if you can always shop at the same grocery store and park near the same entrance to the mall, you can increase the chances that the restrooms will be ones your child is more comfortable with.

Giving them advance warning

Talk to your child ahead of time about what they can expect in a public washroom. Let them know that you will be there with them, supporting them and helping them in any way you can. Encourage them to talk openly with you about which parts you find the most challenging. Address their fears. Brainstorm ideas together for ways to avoid or minimize those challenges.

For sensory seekers, lay out the expectations before you go in. Dayna from Lemon Lime Adventures says that she tells her son that he can only touch things one time. Having expectations such as these laid out beforehand will lessen problems while there. Another suggestion would be for kids to keep their hands in their pockets.

Come prepared

Other than bringing small stickers or post it notes for covering the automatic flush sensors (which are also good for covering the sensors on the taps and hand dryers as well), you can also bring sound dampening earmuffs or noise blocking headphones to keep out the loud and sudden noises that can occur. Even if you are able to cover the sensor on the toilet your child is using, you can’t cover the sensors on the toilets other people are using! Bring hand sanitizer or antibacterial wipes to wash up with so that you can avoid the sink area entirely. This not only allows you to avoid the water, but the powerful dryers as well.

Acknowledge the challenges and give praise

Surviving that minefield is a praise-worthy accomplishment for both you and your kiddo. Acknowledge that you know it wasn’t easy for them and are proud of them for their efforts.

Thankfully, the terror that public washrooms used to hold for my kids is losing its grip as they get older and as they get better skills under their belt for dealing with their sensory needs.

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


If you have a child with sensory issues, you may be interested in reading:

Money Saving Sensory Solutions

Must Haves for Kids with Sensory Issues

Create Your Own Anti-Anxiety Kit for Children

How to Rely on God When Your Child is Sick

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How to Rely on God When Your Child is Sick

I make the drive on autopilot, having made this trip hundreds of times now. I never bother to look for empty spots as I snake my way down the parkade to “our” parking stall, the one in the corner of the lowest level. “Our” parking spot is near the stairs. Some days as we run up the six flights to the top floor, I pause to exhale a prayer of thanks. Taking the stairs is a victory for my daughter.

The first time I drove to this building, we had been discharged from the hospital, my daughter still struggling to breathe. I had begged the doctors there not to send us away, had known in my mommy gut that their assessment was wrong, that something was so terribly wrong with my baby girl.

In the hospital parking lot, I cried out to God for a miracle and He whispered a name. I called that friend and left a sobbing message on her machine. As I drove further away from the hospital, feeling more desperate with each block, I helplessly watched my daughter labour for breath in the back seat. My mind raced.

The cell phone rang. It was the friend whose name had come to mind when I had asked God for a miracle. I heard only snippets of what she was saying “best pediatric pulmonary doc…staying open past closing for you…follow my exact directions to get there…go now”.

When we arrived, her lips were again blue. The doctor was incensed but not surprised that the hospital had discharged her. He began to treat her right there in his office. He was able to accurately diagnose her and take over her future care. Some might say the doctor saved her. I know of course that it was God who saved her, God who has plans for her, God who has blessed me with her for this time.

Having a daughter with a chronic illness has caused me to rely on and trust God in ways that I never thought I could. Through it all, my daughter has taught me the power of compassion and positivity and shown me the true meaning of bravery.

Learning to rely on God in the midst of our daughter’s illness did not come easily for me. It is something that at times I still have to work on. These are the things that helped me:

Accepting that I couldn’t change the situation.

My daughter’s health was something I could not control no matter how much I wanted to or tried. Understanding that worrying constantly or being in a state of near panic did not help to bring her healing helped me to release that burden of worry over to God.

Reading His word.

The Bible talks an awful lot about fear. Reading those verses helps me not only to relinquish that fear but also to realize that for God to provide us with so many verses about it, He must understand how difficult fear is for us.

“For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.”
Isaiah 41:13 (NIV)

Believing in the power of prayer.

I read books and listened to sermons and researched prayer. Then of course, I prayed. I asked others to pray. I continue to pray for a complete and miraculous healing for our daughter.

Knowing that God is the ultimate Healer.

Read verses such as Psalm 103:1-3, Matthew 14:14 and Exodus 23:25-26. Put your trust in Him.

10 Steps in Advocating for Your Child

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Parenting a child who is ill or who has special needs is a difficult job.  One of the most important parts of that job is advocacy.

Advocating for your child’s medical, educational or emotional needs is critical in order to get them the best treatment and quality of life possible. Children with a disability or illness need someone in their corner who is able to give them a voice and as their parent, this has to fall to you. Here are TEN important factors in child advocacy:

how to advocate for your child

Research. Finding out that your child is sick or having them diagnosed with a disability is overwhelming for any parent. Once you are over the initial feelings of shock, sadness, anger, and helplessness, it is important that you arm yourself with knowledge. Knowledge is power. The feeling of helplessness will lessen if you are doing something to help your child and research is the first step.

Get to know the lingo surrounding your child’s condition. There is nothing scarier than hearing professionals discuss your child and not being able to understand what they are saying. Learning the vocabulary will not only help you understand them, but will also enable them to share more with you and involve you in your child’s case.

In researching your child’s condition, the internet can be a tool, but it is important to note that not everything you read on the internet is true. Anyone can write anything on the internet. Be sure to cross reference what you learn on the internet with medical journals, books in the library, and with your child’s physician. Misinformation can be scary, so be sure that what you learn is accurate. Many parents are afraid of what they will find if they research their child’s diagnosis and therefore skip this step, but you cannot advocate effectively for your child unless you understand as much as possible about their condition, the treatment, and anything else that could affect the outcome.

Choose a good doctor. When our daughter Miss Optimism’s health started to decline a number of years ago, after doing some initial research about her condition, I began searching for the best doctor possible. I asked friends of mine who were nurses. I asked people who knew people who had children with similar conditions. I asked other doctors. I researched online. One name kept coming up everywhere and I knew that he was the doctor we wanted in our corner. Now, years later, I have never regretted that decision. My only regret was in not actively looking for the best doctor specializing in her condition sooner. She spent two years with a Specialist who was not the best and who did not truly care, and it caused additional stress in an already stressful situation. If you are not happy with the quality of care your child is receiving, do not be afraid to look for another physician. Also NEVER BE AFRAID TO ASK FOR A SECOND OPINION!

Ask questions. Don’t be afraid to ask questions. If there is something in the plan for your child that you do not understand, ask. Ask about side effects of any medications or treatments. Ask about alternative treatments. Ask about the research behind things and the reasoning behind decisions.

Stay current. Continue to research as medical breakthroughs are occurring all the time. Stay abreast of the latest research. One caution here though is to pick and choose which of those you present to your child’s physician. If you are coming into the doctor’s office every week with a new alternative treatment that you want them to try, you will quickly be dismissed. If, however, you sift carefully through all the information that you uncover and present what you consider to be the very best ideas, you will be given more respect and taken more seriously.

Remember that what works for one child does not always work for another. I had read a lot about the benefits some families had seen in putting their children who were on the autism spectrum on a gluten free diet and decided last year to try it with our son Einstein who has Aspergers. For us and many others, it has made a huge difference, but for some, there are no noticeable changes with this diet whatsoever.

Keep important documents with you at all times. Each child’s situation is unique and the documents will differ, but you should always keep a list of the medications your child is on as well as the dosage for each, important contact information for their physician, emergency contact numbers, and copies of any papers that outline the child’s condition. You may also need to carry things such as insurance papers.

You may not think that you need to carry these lists as you know your child’s medications, but if there were ever to be an accident and you were unconscious while your child were being transported to the hospital, this information could save your child’s life. Also, in situations of extreme distress such as if your child were to stop breathing, it may be impossible for you to remember the dosages of their medications.

In our daughter’s case, I have a letter from her Specialist that I carry with me everywhere. As her condition is rare, I have had to take this letter out several times at the hospital when they were going to release her as they did not understand the seriousness of the condition. As her mother, I was trying to advocate for her, but doctors tend to assume that parents overreact and were in the habit of not listening to me until her Specialist provided me with this letter. Once I pull that letter out, action is taken immediately and apologies are usually made. Her physician is so highly respected that his name alone carries weight and his instructions are taken very seriously. Having this letter saved our daughter’s life just last year.

We also have a letter that we carry with us when we travel and I carry insurance papers and a list of her medications. I did not used to carry the list of medications, but last year when we had a bad scare, I was so panicked that I could not remember even the most basic things in the Emergency room.

Follow your gut. Doctors and nurses have years of medical training, but you know your child best. If you know that something is not right, follow your intuition as a parent. If you are turned away or dismissed, continue to pursue it. Many children’s lives have been saved thanks to a parent who followed their instincts. I cannot stress this one enough. You are truly the expert when it comes to your child.

Ask the doctors “what would you do if this were your child?”  When faced with making a decision about treatment options for your child, do as much research as you can, but also ask this question of the people treating your child. Their answer may help you determine what to do.

Never be afraid to stand up for your child. There is likely no one on this Earth who loves your child as much as you do. Your child needs you in their corner ensuring that all is being done to care for them in the best and most effective way possible. If you are not happy with something, never be afraid to speak up. The stakes are high. Remember that any parent in your position would fight to see that their child was cared for.

Take care of yourself. Caring for a sick child or a child with a disability is exhausting and time consuming, all consuming really. If you do not take care of yourself though, you will not be able to take care of your child. If you get run down and sick, things for your child will only get worse. Give yourself permission to pamper yourself even with little things such as a hot cup of tea. As living under the strain of a chronically ill, terminally ill, disabled, or special needs child is emotionally taxing, consider therapy for yourself. If therapy is not something you can afford financially or with the time it will require, even just journalling your feelings will help. Acknowledge to yourself that the position you are in is a difficult one and try to make time for things that bring you pleasure.

Ask for help. No one should ever do this alone. There may be friends and relatives who are standing by feeling helpless about the situation. It will make them feel like they are actually doing something if you give them ways to help. Ask for people to bring meals to your family, to help with your other children, to do housework, yard work, or anything else that will free up your time and energy to be able to better care for your sick child. If your family is failing financially under the weight of medical expenses, ask someone close to you to organize a fundraiser.

Parenting is a challenging job already but parenting a child with medical needs or other special needs can put too much strain on any family. Ask for help. If you do not have family or friends living close-by, reach out to your church or community agencies and ask what help they may be able to provide.

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

Parenting a Sick Child: Taking Care of Your Other Kids’ Needs

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Having a sibling with a chronic or terminal illness can have a lasting negative impact. Here are some suggestions for helping your other children cope with the illness of a sibling.

Growing up as the sibling of a sick brother or sister is difficult. In addition to much of your parent’s attention being directed toward the child who is ill, there is also a lot of worry and uncertainty in your life.

One of our daughters, Miss Optimism, has a chronic health condition that at times, has kept our family hostage. To believe that her condition has not impacted our other children would be naive. We have had to cancel family vacations when her condition was unstable. Even our daily plans and routine are never guaranteed because of the uncertainty her health involves. There have been periods of our lives, including an eight month block, when my attention needed to be focused on keeping her alive. When that is my focus, it only stands to reason that the other kids miss out on my time and attention. If I am not careful, their resentments will start to build towards me, and towards their sick sister. There are some steps that you can take to preserve your family and protect your other children, even while dealing with the demands of caring for a sick child.  So often, we take care of the most immediate issue, which is the health of that one child, without considering the impact the situation is having on the mental health of the rest of the family members.

Have them help. You do not want your other children to have to slip into the role of caregiver for their sibling, but having them help with small things pertaining to their sibling’s care will help them to feel involved. Helping will also give them some time with you and give them the opportunity to ask questions and learn more about their sibling’s health condition. It also will give them more empathy towards their sibling if they see what type of treatments they go through. I sometimes ask one of my sons or other daughters to carry my daughter’s medication bag to me. I use this opportunity to praise them for their help and also to tell them what the medications are for. Each time that my daughter goes in to the doctor for injections, she chooses one sibling to go with her. She likes to show them how brave she is when she gets her needles and they like to go because they get a lollipop from the nurse afterwards and get to spend some time with me.

Talk openly. This is by far the most important thing. If you take nothing else away from this article, please remember this. Children have very active imaginations and they will imagine things that are far worse than the reality. Thinking that you are shielding them from the truth by not telling them or by only telling them certain things is misguided. Of course, you will need to determine what to share based on the age, maturity and personality of the child. You can ask a doctor or therapist for their advice on this or take cues from your child.

Having a brother or sister who is sick is scary and they are probably already imagining the worst case scenario and living in fear. Be honest with them. By sharing as a family what is really going on, you will also open up the doors so that your child will be able to ask you questions and share their fears with you. Children commonly assume that they will also become ill with whatever condition their sibling has, but do not express this unless you open the door for that conversation to happen. If their sibling is terminally ill, talk about the possibility that their brother or sister could die. Ask them how they feel about that and give them the opportunity to do or say what they need to.

Spend the time. Having a sick child feels like it takes up all of your waking (and non-waking) hours. It also feels like it takes up every ounce of your energy. Sometimes the thought of trying to make extra time for your other kids just feels like too much. But it is imperative that you do. You need to find a way. That could mean that you utilize a babysitter, respite service, or a relative to care for your other children or that you just allow one child to stay up later than the rest on a rotating schedule so that they will have one-on-one time with you. You can also spend time with them while you are caring for your ill child by involving their help or bringing them to appointments with you.

At one point, our daughter was going to see her specialist at least three times a week for months. When I would take her to those appointments, I would be gone for at least four hours. That kind of time away from the rest of the kids takes its toll. By bringing one of them with me to the appointment, I also took some of the mystery away. They no longer had to wonder what I was doing when I was gone to these appointments because they had each been there. Of course, time with the other kids is not always possible such as when our daughter is in the hospital, but them seeing that I am making the effort when I can goes a long way with the kids.

Get professional help. Having a child with a long term illness takes a toll on the whole family. Being aware of the impact that it is having on your other kids is a good first step, but that may only add to your guilt that they are not getting a “normal” childhood. There comes a point when you cannot cope alone. Get your other children in to see a therapist, enrol them in group therapy where they can talk to other kids who also have a sibling who has an illness, or check with your local hospital to see if they have any sibling programs. They often do. Some of the sibling support groups will be very specific, such as ones where all the kids have a sibling who has cancer. The more specific programs are generally better, though any therapy or program specific to siblings is probably better than none.

Books. There are many children’s books available that confront the things that may be scary to your children. There are books on hospital stays, doctor’s appointments, sickness, and even death for children of all ages. Choose books that are age appropriate and remember to also read them to the siblings of the sick child, not just the sick child.  We often remember to read a book on going to the hospital to the child who will be going, but forget that their siblings may have fears as well and would benefit from learning more about it.

Children’s books about going to the hospital:

Going to the Hospital Sticker Book
Franklin Goes to the Hospital
Going to the Hospital (this one has pictures of real people which I like)

Children’s books about going to the doctor:

The Berenstain Bears Go to the Doctor
Going to the Doctor Sticker Book
Say “Ahhh”: Dora Goes to the Doctor

Children’s books for siblings:

When Molly was in the Hospital: A Book for Brothers and Sisters of Hospitalized Children
What About Me?: When Brothers and Sisters Get Sick
When Someone You Love Has Cancer: A Guide to Help Kids Cope

Ask for help. Ask for help from those around you so that you will have more time to devote to all of your children. Many churches have programs where they will deliver meals to families who are dealing with illness or loss. They also may be able to get volunteers to come in and clean your house or sit and read to your ill child while you play with your other children. You cannot do this alone. Ask for help from your community, your neighbours, your friends, your church, and your family.