A Christmas Gift Guide for That Special Girl With Rett Syndrome




We’re just two weeks away from the big day. How did it creep up on us so fast again, right? But you know what? I’m ready for it this year. My Christmas shopping is done! Well… except for that one impossible person to shop for.


Do you have that person on your list too? You search and search and nothing resonates with you as you search for a gift for that person.

For many of us, December and Christmas brings with it added stress and anxiety. Sure, we enjoy putting up the tree and the lights with the music playing and the cookies baking… but there are so many other expectations that we don’t enjoy. The biggest one for me is gift giving.


See, I love giving gifts. But I hate giving gifts that miss the mark. I have high expectations for myself. I overthink every gift I give. So with that being said, I’m sure you can imagine how much I hate helping others with this task… because what if I lead them astray? Then the fact that they missed the mark with their gift is on me as well!


But being the parent of three special needs kids, I’ve learnt very quickly to expect everyone coming to me looking for help. I give all my good ideas away to everyone else and I toss a pair of underwear at Liam and wish him a Merry Christmas.


However, with Madison it’s not that easy. Rett Syndrome has taken so much away from

Madison, I can’t let it take Christmas gifts away from her too. Now, I know, I know. There is more to the season than gifts… BUT SHE IS A FIVE YEAR OLD GIRL!! All my kids still believe in Santa and I like it that way.

So I started asking my closest friends what they did for or got their girls at Christmas and it was shocking to hear how many Rett parents feel the exact same way I do. “Struggle” was the most common word I heard when discussing this with them. It was at that moment I knew I had to write a gift buying guide for the Rett Community.


Now just in case you stumbled across this guide by accident or are brand new to the community, perhaps as an extended family member or friend, let me remind you what Rett Syndrome is.


Rett syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops, causing a progressive loss of motor skills and speech.

There is so much more to the disorder than that text book definition but it suffices for the context of this guide. So lets jump in:



AGE APPROPRIATENESS MAY NOT BE APPROPRIATE


Not only can I confirm this to be true with Madison but I have heard this from others I asked. Think younger. Rett is a developmental disorder. That’s your big clue. Madison is 5 and still gets excited at gifts you’d typically buy a 12-18 month old. If it lights up and makes noise (preferably music) she will be interested. And to be honest she still NEEDS this kind of toy-one that makes her hit buttons or switches or things that challenge her motor skills.


Having just had our fourth child five months ago, it's really starting to dawn on me that real soon now, I'll be buying toys that both girls will be playing with... and fighting over.


But there is nothing wrong with this. You need to meet kids (regardless of who they are, disability or not) where they are at to have the biggest impact. So disregard that stupid age recommendation on the box, and find something that will connect with the child - even if its in an aisle that seems a little more elementary than what others their age are asking for.




EXPERIENCES ARE PRICELESS

Toys last for what... a few days? Weeks? Months? But memories last a lifetime. This is a core value of who I am. My brother is the only person in the entire world to have figured this out about me. I remember almost every single gift he has ever given me because they have all been experiences which have formed into long lasting memories.


I think it’s unanimous among those I talked with, that providing experiences for our girls is FAR MORE VALUABLE than receiving another tangible item. Now this isn’t feasible for everyone as experiences often exceed the budget, but if it’s an option I would beg you to consider it.


A concert, a hockey (for Canadians) or football (for Americans) game, a day pass to a science center, a trip to a museum or an interactive farm or orchard, a ride on a steam train, a day at the zoo or aquarium… the list is almost endless.


Give them a memory... a moment that they can remember and cherish forever.




CLOTHING AND COMFORT ITEMS


This was a big one for many of the parents I asked. Spoil her with special clothes. Go all out and find the special companies that make sensory sensitive clothing. For Madison whose only method of moving is knee walking, a company like Lands End with their “Iron Knees” is a no brainer for Madison.

Stuffies and plush items were another popular item I heard from many of my friends, especially if they corresponded with a favourite TV show or movie. It seems everything has a merchandise line associated with it nowadays, so hit up the Disney store and find that item that will bring a smile to their face.




CRAFTS AND BOOKS


For this category, you will really need to know some basics about the child you’re buying for, because everyone’s abilities will be vastly different - especially when it comes to crafts. I talked to a couple Rett parents who had loaded their Christmas shopping cart FULL of craft supplies for their girl that included coloring, beading and more. It was hard for me not to be insanely jealous, because Madison doesn’t have functional use of her hands so coloring and beading are out.


That’s not to say everyone is like Madison. Many of our girls DO HAVE functional use of their hands and can grasp a crayon or do some basic crafting. So age appropriate (or slightly younger) art supplies could be a huge hit PLUS double as a therapy or IEP goal.


The thing about books is that they let you travel without moving your feet. For many Rett girls, their mobility is extremely limited; which may mean they won’t get to explore the world the same way other kids their age will be able to do. So, why not bring the world to them?


There are millions of titles to pick from, but think broader than maybe you’re used to. For Madison, it would be super special to receive an ebook that she can “read” on her tablet. There is even an online library for people who have learning disabilities that makes it difficult or impossible to read printed text called Bookshare. This would be perfect for many Rett girls.

Or if the fun and memorable route is more your style, customize and personalize a book for her like this one. Insert HER into the very book she is reading.




ADAPTIVE EQUIPMENT


Another category of gifts are adaptive and more practical gifts. For many with Rett, functional use of their hands or bodies in general are limited which poses every day challenges. For Madison, a goal we’ve been working on is being able to feed herself. There are many logistical problems we’ve encountered but one product on the market that may help is called Liftware. There is a spoon developed actually for those with Parkinson’s to enable them to feed themselves even with excessive shaking or difficulty bringing a utensil to their mouth.


All parents of special needs children will tell you they are constantly on the look out for adaptive equipment that may include large piece puzzles, switches (large buttons that require interaction to activate a toy), therapy balls, swings, specialized straws or drinking cups, and more would all fall under adaptive equipment.


These items typically are bigger ticket items that would be perfect to go together with other family members or set up a contribution fund to save up for purchase.


SUBSCRIPTIONS

I thought I was the only parent managing so many subscriptions for Madison, but from my quick survey I learnt we all have more than average specifically for our girls. From learning based apps to streaming entertainment, we’ve got it all. But they add up quickly, and at our monthly budget meeting, subscriptions are often the first to get cut if we need to free up money for food or clothes.

This is a quick and easy gift to get our girls, and it can be done 24 hours a day without leaving the house. So if you’re down to the wire on Christmas Eve - like I often am, this idea is for you!




This gift list is obviously not exhaustive and like any good gift-giver, being thoughtful, intentional, and sensitive are all required especially when buying for a child with special needs. At the very least, I hope this list inspired your own gift-giving quest this year or provided ideas for other special occasions!


Would love to hear your ideas and what you purchased this year.

Happy shopping and happy holidays!

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