There is a unique kind of grief that comes along with being the parent of a child with special needs. For me, the grief comes in waves, sometimes threatening to overtake me while at other times ebbing and allowing me the chance to breathe. 
Maybe you find yourself feeling this grief too. You may feel guilty for the conflicting feelings you have. I want you to know that it’s okay to grieve.
Before you had your child, you probably had an idea of what it would be like to watch them grow up. Maybe you imagined being at their baseball games cheering from the sidelines or pictured moments snuggled up on the couch together reading a favourite story. You may even have projected things far in advance such as their wedding day or high school graduation. No doubt you also imagined what you would be like as a parent and what you would teach your child.
The dreams you had and the vision in your mind of what your family would be like probably looked quite different from how the average day plays out in your home.
And while normally, I am here to give you tools to help you better meet your child’s needs or better understand them and I’m here to help you champion your child, today, I’m here to say that it’s okay to grieve for what you thought would be and isn’t.
Do any of these apply to you?
- your child’s behaviours sometimes have you in tears
- you question your ability to adequately meet their needs
- you’ve received a diagnosis for your child
- your child rejects you
- you feel like your friends with “neuro-typical kids” just cannot understand
- you feel isolated or alone
- your home is more chaos than peace
- you sometimes think about the dream you used to have for your child
- you think about “before” your child’s illness or diagnosis and feel sadness
I need you to know that feeling these things does not make you a terrible parent. These feelings do not make you an awful person. It makes you human. It is normal to grieve the loss of something. Having a child who struggles is the loss of the dream of how you thought things would be. It’s okay to grieve that loss.
To be clear, grieving the child you thought you would have does not mean that you do not love the child that is.
Give yourself the time, space and care to be able to grieve what is a very real loss. That means allowing yourself to cry, talking to others who do understand (find those who have walked this road themselves), self-care, self-care, self-care, and possibly even going to therapy to help process and work through your emotions.
The grief doesn’t end. It comes in waves. Sometimes I’m fine for months, and then BAM, I’m a puddle of tears in the fetal position on my bathroom floor holding a chocolate bar!
Seeing my daughter grieving her hearing loss, my son not having friends to invite to his birthday party, even something like reading the posts of friends on Facebook can ignite my grief anew. The waves can build up over time or swell quickly spurred on by an event or milestone. 
I used to feel so guilty for these feelings. I felt like I had no right to be feeling sad myself when my child was the one being directly affected by their challenges.
But then I came to accept that it’s okay to acknowledge those feelings and to really feel them. It’s okay to admit that my dreams need to be different now. It’s okay to grieve.
Of course, it’s also important to push through and find those new dreams and new ways to create joy in your life and your child’s life. It’s about balance. You’re not going to be any good to anyone if you are crumpled on your bathroom floor clutching a chocolate bar every single day, but your family will survive if you go for a drive and have a good cry once in awhile.
If you’re looking for support or information, join me for a free 5 part email series, Little Hearts, Big Worries offering resources and hope for parents.
You may also want to read:
Special Needs Mama, You Are Amazing!
Even if you don’t struggle with sensory issues yourself, I’m sure you can relate to the feeling of sensory overload. We’ve all been there. For some, it may be at a concert or crowded event. For others, it’s being in a gymnasium full of screeching preschoolers. Or perhaps for you, it’s 
The kids got older. I still saw the need for a sensory room. I knew that if I didn’t create one now, they would soon be grown. That prompted my decision to use a storage closet as the space. I began planning how I could make things myself instead of purchasing expensive equipment.
(photos courtesy of Shelley of 
I placed a bean bag chair under the fibre optic light curtain and a mermaid pillow on top of the bean bag chair. I also have a few “brain friendly” books sitting there in case one of the kids wants to read while they are in the calm down corner. 
There is a long mirror across from that corner. This is for two reasons. The first is that the room used to be a storage closet so it’s very small and the mirror helps it feel bigger. The second is that kids can use the mirror to monitor their breathing and facial expressions which can help them to self-regulate.
The box contains all kinds of fidgets including pencil toppers, 
On the felt board, I put the words “In Through Your Nose Out Through Your Mouth” as a reminder for my kids to do their 
The reason I share this list is to help parents and caregivers determine what stages are best for beginning to introduce 
Whether you’re planning a large holiday party or a small family gathering, these games will bring laughter and fun. (You can also check out our 
This is a great game to play in a large group. Everyone can play at the same time or you can play head to head.
The player starts with the other end of the ribbon in their mouth. They then have one minute to attempt to swing the ribbon and land the pompom onto their nose and stick there. No hands are allowed to be used in this challenge.
Blow the cards gently to move them across the table. The goal is to have one card hang over the edge of the table without falling off. Each player has one minute and ten tries to reach the objective.
Have the player stand on the chair and drop candy canes, attempting to have them hang on the garland. You can have another player on the opposite chair playing at the same time.
For young children, use the wider craft sticks. To make it more challenging for adults, use regular sized popsicle sticks. You can also vary the size of the jingle bells to create more difficulty.
This game is quite challenging, so for younger kids, start with less pompoms or cotton balls in their bowl.
The goal of the game is to move 5 candy canes out of the bowl. The time to beat is one minute.
The player must pick up all the candy using only the spaghetti noodle in their mouth. They must stack all six candies onto their noodle in under one minute.
This game works with groups as a relay or with two players racing against each other. Each of the players places a white pompom (snowball) on a plastic spoon and races to place it in a bucket across the room. The player or team to fill the bucket with the most “snowballs” in one minute wins.
See how many gifts players can open in one minute while wearing oven mitts. This is quite a funny one to watch!
The team that completely uses their toilet paper first wins. It’s fun to see what method the teams come up with to do this quickly.
