Musings of a Marfan Mom

2011 Marfan Gift/Resources Guide

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I had all these plans to make a fabulous gift guide geared towards Marfs, but this month has been more busy than I could have anticipated. So, this is coming out just in time for all you last minute holiday shoppers (I myself just finished Christmas shopping about an hour ago)!

It’s that time of year again: holiday shopping! Ever since the boys’ diagnoses, we’ve been focused on getting them toys that will aid in closing the gap on their developmental delays. I know there are a lot of special needs gift guides online right now, and probably more than a few that focus on autism. This guide, however, will concentrate on toys and other products that are of specific use to those with Marfan syndrome and related disorders.

Some of these products are ones that I’ve used with Baby J. Others come by way of suggestions from my readers. If you have questions about the items here or have some you’d like to add, be sure to leave a comment!

Toys:
Playskool Busy Boppin’ Pals
This is a recommendation from Nakia, and I second it! These types of toys are great for fine motor skills building. First the child learns to slap down the characters’ lids and then they work on developing the ability to manipulate the controls in order to make the characters pop up. We don’t own this particular one (Nakia does), but Baby J really enjoys the one that his OT has and is getting pretty adept at closing the lids.

Baby Neptune Ocean Orchestra Turtle
We found this to be a great toy for building gross motor skills. All of J’s therapy team recommended we buy some toys with flashing lights and catchy sounds to attract his attention. In the beginning we used this to get J to turn towards the sound and roll over, but as he got stronger it’s been a great motivating tool for him to crawl towards. Bonus? This toy plays classical music, so it’s not nearly as annoying as many of the infant and toddler toys on the market. There are two modes: conductor, where the child picks which instruments are heard by pushing each corresponding button, and orchestra, where touching any button sets off the entire group of instruments. Unfortunately, there is no control for volume. Also, the turtle doesn’t actually move, even though it looks like it does.

Mickey 4-in-1 Ride On
This toy also comes by way of Nakia and is designed for gross motor skills development. What makes the Mickey Ride On different from other, similar toys, is the removable bar. This is great for kids with low trunk tone to be able to stabilize themselves while they move around, and can be removed once the child is stronger.

Monkeying Around
Alix’s daughter’s OT recommended this game to build fine motor skills. The point of the game is to hang all your monkeys from the tree without knocking down all the other monkeys. It takes a delicate touch! The game is marketed for children ages 4-8 years old.

Honeybee Tree
This is another fine motor skills game Alix plays with her daughter. Players take turns pulling leaves out of the tree, trying to avoid letting any of the bees slip out of the tree. It’s marketed for children ages 3-6 years old.

Trouble
Who doesn’t love the classic Trouble game? Alix pointed out that pushing down the bubble in the middle is a great way to strengthen the fingers/hand.

Feeding:
Tumbleform Chair
Both Samantha and Sarah’s children use Tumbleform chairs. Samantha writes “It keeps good head control and good back posture helping them to sit better, [and] it can be used in different positions because of the velcro.” This product is for children with gross motor delays and comes in many sizes.

Sassy Spoons
Our OT recommended these for J. The bend in the handle is easier on the wrists, and the holes help keep the food on the spoon. We just bought these for him for Christmas, so I’ll know how we like them soon enough. If you look for these on Amazon, know the prices vary widely. We bought a set for $0.79 and now they’re between $1.15 and $7.33.

Movement:
Cosco Beep Beep Walker
Erin’s daughter loves this walker, designed for gross motor skills. It enables her to move around their home to explore quickly and strengthens her legs at the same time. The walker has a safety feature to lock if a child were to try to go down the stairs in it.

Quinny Buzz
Sarah’s son (still a baby) has really loved this stroller. It has memory foam, which is comfy, particularly for those babies who are on the skinnier side. Sarah also says that it’s made eating out easier, as her son can’t use traditional high chairs due to his low muscle tone.

Cybex Onyx
Low muscle tone issues can persist for years, causing fatigue even into adulthood. Because of this fatigue, some children with Marfan need to use a stroller past the age when “typical” kids do, and finding one can be a challenge. Alix loves this stroller for her daughter. The Onyx is lightweight and holds children up to 55 lbs.

Are there must-have products or life-changing toys I’ve missed? Fill us in in the comments!

* I did not receive any compensation at all from any of these companies for reviewing or otherwise mentioning their products.

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6 Comments

  1. Those look like great toys. I remember Lee had a toy similar to the Busy Poppin’ Pals. He could push the lids down no problem but didn’t have the finger strength to push the buttons for the characters to pop up. He finally got to where he could get one or two. On a side note, you can’t buy walkers in Canada. It’s a safety thing.

    [Reply]

    marfmom Reply:

    Yah, I’ve heard they may be banned here as well.

    [Reply]

  2. I am so new to the marfan dx that I had no idea that Max’s motor skill delays could be marfan related! Thanks for posting.

    [Reply]

    marfmom Reply:

    oh yah, if he’s got marfan then that’s the cause! marfan can also indirectly cause speech delays. it’s probably not something that you’ll find in the literature, but i’ll be doing a blog post about it soon.

    [Reply]

    Julie Reply:

    Thanks, I look forward to reading it. Max is just starting to talk. He has a speech therapist. (He’s 2 and a half.)

    [Reply]

  3. i think one of the best toys you didn’t mention is the shape-O toy by tupperware

    http://order.tupperware.com/coe/app/tup_show_item.show_item_detail?fv_item_category_code=7000&fv_item_number=P10054276000

    Classic rattle, shape-sorter and counting toy!
    Here’s a toy that grows with a child, from infants to pre-schoolers.

    As a rolling rattle, it has lots of open spaces for infants to grab. Toddlers can use the 10 pieces to match the shapes on the toy, allowing them to identify shapes and develop coordination and dexterity. Each piece also has a number on one side with the corresponding number of dots on the other to teach preschoolers number recognition and counting.

    i had one as a kid and she i worked as a nanny for twins one of whom was autistic he really enjoyed it first it is a rattle/ball then you can learn to open it and they can put the pieces in the proper holes they can learn shapes each piece has a number on is so they can learn numbers there is so much that this toy is good for in both gross and fine motor skills

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