Tag Archives: special needs

Ronald McDonald House – Another Star Lost

“They never knew how much a broken heart can break the sound and change the seasons. Now the leaves are falling faster, I believe in ever after. You gave me hope through your endeavors, now you will live forever.”

Yesterday was great, spending the day with friends. But then it all comes crashing down when I read the message on my phone this morning, and saw the posts. Now my heart spills out in an agony of tears. One bright star, smiling through the impossible cancer she faced. The star has moved on, but her light would not fade.

This is the second playmate that we have lost in the last year. My daughter, young as she is, won’t remember, and it doesn’t impact her life in any way.

But I remember.

I remember being at the Ronald McDonald House during our time in Seattle, talking with the other moms and sharing treatment stories, hardships, the progress we’d made – sharing in the collective burden of having a child with serious medical needs.

I remember coming together for the communal dinners supplied by volunteer groups, joining in the activities that were always provided. We shared about which group’s cooking we liked better, and about the difficulties in getting our kids to eat. I remember that as we got further into our own chemo treatment, my little girl would only eat chicken nuggets and, toward the end, nothing at all.

We rejoiced when one of our group got the okay to go home, whether it was just for a few days’ leave or they were done with treatment and leaving for good. There was one family who’d spent two years at Ronald McDonald, never even going home once for a visit. They finally got clearance to go home permanently, and we all cried. They were the longest running visitors at the Ron Don house.

There was a park nearby, where I sometimes took my little girl. Technically, because of her immune system, she wasn’t supposed to go to public places like that, but sometimes the little bit of joy it brought her was worth it. She loved the swings. Sometimes, a Ron Don family would join us. A few times, it was a dear little girl, six years old, who was Lanae’s friend.

That same little girl passed away last year – went home after treatment, and was back in Seattle in a month.

We’ve lost others, as well. And with the news of each one, I am reminded of the ferocity of the beast called cancer, and I feel a stir of fury and heartbreak, and I can’t help but feel the burden of the world. I look at my daughter, so strong and healthy, and I feel sad that she won’t remember these friends that she so loved to play with.

But I remember. I remember the laughter they shared, the shared struggles we faced. And I’ll keep that memory in my heart, along with so many others.

Izzy, you were a bright spot in a dark world. I’ll never forget it.

 

Into the world of special needs

Special needs. It’s a little world all in its own. Half in the “normal” world, half in the world of doctors, hospitals, and therapists. It’s a world where the smallest actions have ripples – a single step is progress, a low fever is worry.

It’s been a year since my daughter became “special needs.” Before that, we were the average family just trying to make it by. Then everything changed. And I learned that when you’re special needs, things change so drastically.

These are just a few of the things that come to mind for me. Maybe you can add a few of your own?

You become familiar with medical terms, hospitals, and doctor’s offices. You might have your hospital’s number on speed dial, but more likely, you have it memorized. You know the layout of three different hospitals, but one is more familiar (and more loved) than the rest. You know about medications, diagnoses, clinical terms like “hemiparesis.”

You have a love-hate relationships with therapists. New ones especially. And once you find one you like, you don’t want to move, because you know it’s soooo hard to find one who connects so well. The therapist may know her stuff, but if there’s no connection, nothing’s happening, right? And it’s so hard to watch your little ones struggle so hard to do a simple task.

Therapists have a love-hate relationship with you. New ones especially. You’re so used to accommodating for your child, that inevitably spills over into therapy time. After all, you can’t just flip a switch and be done. You spend your time translating, adapting for language or physical difficulties, knowing your child’s needs and wants and capabilities, that anyone else doing the same is difficult to take.

You’re your child’s own therapist. Therapy doesn’t happen as often as you’d like. There’s insurance, and schedules, and all that goes into it. So inevitably, you find yourself working with her at home, or going places just to challenge her facilities. Most parents take their kids to the park to play; you take yours to the park so she can practice walking up those steps.

You’re a barrier between your child, and the rest of the world. You’re right there when she has difficulty walking across the uneven ground while other kids race by. You’re the interpreter when she wants to go up and say hi to a stranger, or give them an energetic hi-five. You’re the wall between her unsteady balance and the adults rushing past who don’t see the child who has trouble walking.

You become far more anal than you ever were. You never used to care about kids climbing, running, playing on their own. Now, you can’t stand to be more than two feet away. What if she falls? She has that speech impediment – what if the other kids can’t understand her?

You’re not sad about starting preschool, because you’re just happy that she gets to be around other kids. Points if they happen to be kids with difficulties like her own.

You take extra time planning events around your child’s needs. Like birthday parties. The park – too open, and she wouldn’t be able to keep up with the other kids or run around with them. Is there an indoor place where they can all have fun together?

Play time becomes therapy time. You know more about how to make average toys into therapy games than most people even know how to play basic kid’s games.

Clothes shopping becomes a different story for you. It’s not just about finding the right size, it’s finding the right fit. You’d almost rather other people not shop, because it’s difficult finding the right one. You specifically note on Christmas wish lists to please not get certain items like shoes or even slippers.

Your wish list changes in other ways, too. No longer does it include basic interest and likes. You have this insane desire to put together a comprehensive, detailed list of the exact activities and toys that would be “great for therapy work.”

Other parents teach their kids to greet someone with a “hi” and small talk conversation. Your coaching on teaching your child to greet someone includes focusing on specific words or movements.

You love talking about it. When you find that rare person who knows what it’s like (such as the one other special needs mom at the park), you can easily spend hours discussing the topic. You have no problem informing others what you have to deal with, or about the progress she’s making. You love talking about her history, about where you’ve been and where you’re headed.

At the same time, part of you longs for normal. You appreciate those few who treat your difficulties as though it’s totally normal, who simply accept it as is, without even a comment. Not that they ignore it, pretend it isn’t there, but that it’s accepted as normal, as part of life.

Your world certainly changes when you enter the “special needs” arena. Everything revolves around the needs of your child, the difficulties she faces. You don’t avoid life, but when possible, you try to plan for something that will allow for her handicaps. And above all, you love and treat your child the same as any other parent.

Special Needs Christmas List Ideas

It’s halfway through December and Christmas shopping is in full swing. As you go through your Christmas list, perhaps there is one person that stands out – one child that society classifies as “special needs.” What do you get for the child who isn’t “like everyone else”? For some, a toy is just fine, just as you would get for any other kid.

But at the same time – I’m a mom of a “special needs” child. She wasn’t always special needs – you can read Lanae’s story of her battle against cancer here. But the fact of life is, she is now considered special needs. She has a brace – an AFO, as any other “special needs” parent will tell you – for walking. She has to relearn to use her right arm. And she’s developmentally delayed, although expected to catch up quickly.

But through these circumstances, I’ve caught a glimpse into a world that I didn’t even know existed. Chances are, many of you didn’t know, either. So when you are on the outside looking in, how do you know what to get for those inside that bubble? Of course, parents will love any toy – just the fact that you’ve thought about their child makes them deliriously happy. But, as a special needs mom myself, I know that there are certain ones that just make them excited, because they know that this toy will work within their needs, or that it can be applied for therapy. So, here are some ideas to get you started. For the sake of ease, I’ve broken them down into a few broad categories, along with definitions to help you narrow your search. Keep in mind that these are general categories. To get a better idea of what to get, it’s best to know the child’s needs, since what caters to one need has the opposite effect for another. There is also bound to be some overlap between the different categories.

Developmentalkids who for whatever reason are developmentally delayed. This can be autism, Down’s Syndrome, or any number of other reasons. Therapies for this focus on sensory issues, learning and comprehension, and societal functionality.

Kinetic sand – Any parent loves this product for the non-mess. Special needs parents love it because it molds easily, can be grasped in a handful, and provides great sensory reception. You can order Kinetic sand from the Brookstone website, or find it in some retailers, both on and offline.

Sensory bin – sometimes the best gift is the homemade one. Fill a bin (one that has a tight lid!) with rice, beans, or a similar substance. Add beads, utensils such as a spoon, small cups, and other items to make it exciting. A bin like this gives combined OT and developmental therapy as the child digs to find the hidden items, scoops them into containers, and all the while gets the sensory feel of the rice/beans against their skin.

Puzzles – in varying degrees of difficulty and style, puzzles teach problem-solving as the child figures out where each piece goes. Fine motor skills are also needed to put the piece in the correct spot, so it has an OT application, as well.

SpeechSpeech therapy focuses on communication, both verbal and indicative, such as gestures or sign language. It also focuses on comprehension.

Books (also good for developmental) – Depending on the age/development of the child, different books can have different purposes.

  • Flap books – those that have a fold-out flap to reveal a hidden picture
  • Large pictures, few words – puts the focus on individual words rather than sentences
  • Action books, especially if the child can relate to the action (Everyday tasks, experiences)
  • Eye spy books can keep a kid entertained for hours, and can promote greater focus and concentration

 

Musical instruments – These are great for development, OT, speech, and sometimes even PT. Most kids, even those who are developmentally delayed, get easily engaged with music. Putting an instrument in their hands gives them the power to express themselves in a way they can understand. Tambourines, “shaker” toys, drums, and most other instruments are great.

Physical TherapyAddresses issues primarily with the lower body and core strength/balance. Walking, sitting, standing, and kneeling are just some of the things they work on.

Balance board – Check out this wooden board on Etsy! A friend got this for her boy, who is a perfectly healthy, normal child, but as soon as I saw it, I knew it would be perfect in addressing some of my daughter’s balance issues. When I read the brochure about the board, I learned that that was exactly the purpose of the board! Not only is it great for balance, added with a child’s imagination its possibilities become limitless!

Riding toys, such as a bike or riding toy similar to a toddler’s toy, can be a great tool. They promote central balance and core strength, as well as strength and motion of the arms and legs.

Push-along toys – Toy shopping carts, vacuums, and similar toys can be great for encouraging a young one to walk. Added bonus – the child gets support, but doesn’t feel like a handicap – more like an average kid. These toys offer the support they need, without the obvious childishness of other “learning walker” toys designed for infants and toddlers.

Balls – balls of varying weights and size are great for OT and PT. Kicking, throwing, pushing, and even sitting

Therapy time with Katie!
Therapy time with Katie!

are just some of the activities that can be incorporated with this simple toy.

Child-size foam furniture – climbing in and out of furniture is an exercise for the whole body. This type of furniture, like the ones found on this Toys R Us page, is small enough for a younger child to sit in, but is light enough that it won’t tip over easily. Foam is also less “squishy” than beanbag-style furniture, and is thus more ideal for a child who may need more support.

Table toys – Parents love those tables that have the toys built into them, such as the toy city model, or the train tracks or car map, or those that have various activities such as bead mazes, magnet fun, etc. Special needs parents love them even more. My daughter, who has a hard time standing due to her weak leg, stood for a full fifteen minutes on her own because of one of these toys. I was ecstatic!

Occupational TherapyThis focuses on fine motor skills, particularly with the hands/upper body. Dexterity, mobility, and accuracy are some of the things targeted.

Dress-up items – these are great therapy toys because many of them require certain mobility skills, either two hands to put something on, or fine finger motions. No gender picking! Even boys can benefit – and what boy doesn’t enjoy wearing a cowboy hat or a pirate patch?

Stickers – the OT application is obvious here, as the child works to place the stickers on the page. The nearly limitless applications make it appropriate for any grade level, whether it’s sticker by number or just a packet of stickers and a few blank pages.

Puzzle toys – things like shape sorters, stacking/nesting blocks, brain teasers, and other puzzles are great for PlayOT as well as developmental and speech therapies. They challenge the mind, and many of them require dexterity and coordination, whether it’s to fit the blocks in the holes or simply knocking down a block tower.

Squigz – I first came across these toys when we were at the hospital and my daughter’s therapist brought them in. They are great for OT (grasping, sticking them on walls) and PT (standing up to reach them or stick them on the wall).

This site has a list of some awesome OT toys, all from small businesses on Etsy.

 

This is just a basic list of ideas to get for the special needs child in your life. What are some others you can come up with?