Monday, January 13, 2020

How To Help Build Neck Strength

Today's Awareness post is a little different.
I am very happy to raise some awareness for neck strength and give a bit of direction that could assist anyone searching for specific help on this topic.
In this post, I will list and detail positions for building strength in the neck. Neck strength is a BIG must for head control.
Many of these exercises work on other areas, as well - back, core, legs, coordination of movement and hand/eye coordination, among other things. They also help the child to realize all of the fun that can be had while being upright! Sometimes, that realization alone is enough to drive our sweeties to get a move on. 

If you think about it from their perspective, for a moment.. 
Every day you play on the floor. You are comfortable there. You can move this way and that, to get to your goal- that awesome light-up toy across the room. 
The key here, is that you KNOW how to groove on the floor, your confident and in control. (Even if everyone tells you that it's HARDER that way)!
Then imagine someone telling you that they want your body upright. 
I imagine you'd feel disoriented, uncomfortable, insecure, and maybe just flat weird! 
Without core muscle and neck strength, holding yourself upright seems like an impossible feat. (Especially to someone who has never accomplished the action on their own).
I'm not sure how many kids have a similar situation to my Axel (but I'm going to put it out there, just in case). We realized that since birth, we have to teach Axel everything. 
We inherently have these "knee jerk reactions" (or reflexes in some cases) to a Lot of things, but Axel doesn't. We have to teach him how to respond to everything. (example, I built towers for months, without so much as a sideways glance from Mr. Babyman. Then one day, a little before he turned 2, I repeated my process. To my surprise and enjoyment, he high-tailed it over to the tower (faster than you would think he could, on his back!) and has been knocking them over ever since! I am saying this only to point out something that I feel could be really important, for some people.

If we don't force them to move outside of their "box", they may not understand what you expect from them or that they are even capable of it. That would obviously have negative results. Flailing around, trying to push out of the position, crying. Almost always ending in the same way, with frustration- from both of you!
The end result there, is a little champ that will go to any length to avoid that position, again. It wasn't fun the first time, so why should they want to try again and again. I don't know how strong your sweeties are, but my guy has been working himself to the bone, since birth.
I think he could take Popeye, even with the spinach! lol

Let's jump right in!

I've mentioned before that I am a member of several Facebook groups regarding special needs.
I am in groups for Dandy-Walker, Hydrocephalus, rare diseases, deafness, superheroes (for kids battling anything and everything), muscle tone, tube feeding, colostomies and believe it or not, there are more. Lol
If you have questions about something, there is a facebook group for it, almost guaranteed. 😉That is one thing that we have a lot of, questions..
With Axel's situation, the clear answers are few and far between.
Having parents, caregivers and professionals at our fingertips gives us more information (facts and helpful ideas) than we could ever hope to find, otherwise.
I do my best to offer any help that I can and I ask others, often.
Last week, I ran into the post of a mom looking for different therapeutic ways to improve neck strength and head control, for her baby. 
As her guy has Dandy-Walker, like Axel, I was pretty sure that I could give her some ideas on things that could help. 
Every single case of Dandy-Walker (DW, DWM, DWV) is different, but many of our kids have tone issues, as a result.
If you have been following along with me, you know that Axel has been working hard on head control his whole life (He's 2). He's making great improvements, but it is not a short journey. - However, there are many conditions that can affect muscle tone.
Axel has been in therapy since he was 4 months old. Last year, he had over 300 therapy sessions. I have been shown countless ways to help him get stronger, improve endurance, gain ability and get more comfortable in positions that he is yet to enjoy.

It hit me as I was detailing some ideas out for that mom on Facebook-
this is one mom seeking help for her child. I just bet there are others out there seeking the answer for this same question. 
With all of the information on the internet, sometimes things can be hard or impossible to find. 
It's my goal to make the information accessible within a single post (maybe?), with easy search tags and as much helpful information, as possible. 
Then, these ideas can be more accessible to the people who need it most! 
I am not a doctor, nor do I have any special training related to the topic. However, while living life and learning (sometimes difficult) lessons, I try to pass on whatever help that I can.
I'm going to do my best to describe positions. If I am able to get pictures of those, I will post them asap. If pictures would help you, please let me know which ones and I will do my best ;)

1. Pretty much everything that I list here needs complete adult supervision, most of it being hands on.

2. Keep all of the best toys for work-time. We reserve the exciting light-up  toys that you have to look down on to see/use well, for sitting/standing, only.

3. Keep in mind what you want baby to be doing with each position and try to have toys available to help facilitate that. For instance, if you want baby to use eyes only, a toy that needs buttons pressed to light up won't be a good choice. However, if baby is mastering the tough parts of a position, adding a toy that requires more brain power could help baby learn how to do complicated things while in these positions. You will find that as they get more confident in these positions, playing with a toy will be easy and the position will take much less thinking and focus than it did originally! Yay!

4. Consider any "equipment" that baby may already have, to help. Feet braces (AFO's and the alike), support vests or anything that may make it easier. (Another set of hands never hurts, either!)
However, I found that sometimes the less extra stuff on Axel, the better. He rarely uses his support vest while we work on certain things. I found that he will actually focus more on himself and less on what his body is doing, if he has it on. At this stage, it's best to keep the focus on the hard parts.

AFO's are necessary for standing - unless you are told otherwise by your doctor. 
What is the purpose of an AFO?
An ankle-foot orthosis, or AFO, is a support intended to control the position and motion of the ankle, compensate for weakness, or correct deformities. AFOs can be used to support weak limbs, or to position a limb with contracted muscles into a more normal position.
Foot placement is one of the most important aspects of standing. If your child has AFO's, that means that their feet need extra stability and  help to stay flat, as opposed to pointing downward or to either side, etc. Repeatedly standing a child that uses AFO's on bare feet could have a drastic impact, for life. Not only could baby's feet suffer, their legs, hips and back could, as well.
If standing, try to have at least a hand worth of distance between their feet (they generally line up with hips). This keeps the hips in a nice aligned position. If the feet are too close together, the hips don't "sit" as good together. BUT - If they are too far away from each other, it is harder to stand on them. Over time, it could cause more severe difficulties.
Google says; When babies start pulling to stand, the alignment of their hips is still slightly flexed and rotated in with their legs bowed. Their feet are placed far apart from one another to increase their base of support due to decreased standing balance. They are flat-footed and bear weight through the entire bottom of the foot.
Note: I refer to this more with the use of **.
{** Using both hands, hold top of baby's shoulders, with thumbs extended on baby's back near their neck- this adds additional support vs thumb in with hands at the outside of shoulders = less support. Finger position on front helps a lot, as well, splayed fingers for more support, touching across front of the neck, if necessary. 
Or closed fingers closer to the edge for less support.) - this gives baby freedom to move his head however he can, so extra care is necessary until they don't fling too hard or too fast..**}
Sit baby between your legs using whatever back support they require 
(closer to your body for more support and further out for less and less
back support- to where your hands in the (above) ** position is enough,
even if he's reliant on those hands to stay up. Think of when a baby sits,
kind of poured over their lower body.. Severe bad posture, is the best
way I can describe it, I guess, lol..

Depending on how his sitting is going, a portable highchair (that straps
onto a regular chair) could be a good option. In my opinion, those are
smaller and offer less support, forcing the little one to rise to the
occasion and try to do it on their own. - But not if he sits almost
board-like and stiff, in it. We put ours away again, after giving it a try.
If baby sits okay in it- use of a pillow or small rolled blanket on the
sides, could be enough to make it work and keep them from tipping
back and forth.

You can roll a blanket nice and firm, and put him on his belly with it
under his armpits- and show really exciting things (at eye level)-
just high enough that his chin could get parallel with the floor. Even if
he tries, its awesome exercise!

Log sitting, put baby on your thigh (closer to u for more back support,

further away for less back support) **hands as described in #1, with
baby's feet planted on each side of your thigh.

(from almost any sitting position) Axel will stretch to stand- leaning

on me, then sit back down. Recently, he began to do this constantly
and will push himself harder than anyone else would. In the space of
15 minutes, he did 20 repetitions (that is a lot for ANYONE! His desire
made all of the difference. If it was MY idea for him to stand, he
wouldn't be quite so cooperative. lol) but he is stronger than you might
think. When he's done, he literally pushes himself to the floor, giving
you no choice but to follow. He is very confident moving everywhere
on his back, so the floor is his territory. 
{Side note; While Axel uses AFO's, his feet are not an extreme case.
Discuss with your therapist if there is any tolerance for standing with
out AFO's on.}
I sit (leaned back) indian style in our chair and sit him on my pelvis or
mid to low stomach, with my hands in the ** above position. As he
gets stronger, start rocking gently to add the extra work of
head control while gravity works against us.

We began sitting Axel against the couch and i put my hand on his chest

firmly, so he doesn't tip over. An extra set of hands helped to show him
books and he sat for 10-15 minutes.

When Axel was younger, basically birth to about 1.5 years, he threw his

head around like crazy. I called it his wrecking ball. Lol. It could wreck
you quick and leave you seeing stars. But he loves hanging upside
down (crazy, i think!) and shaking his head and wiggling like a loon,
so do give some freedom. They are just discovering all of the
wonderfulness their little bodies can do .
Just beware of allowing too much freedom, too early.

In most of my suggestions you need to find his comfy spot. 
If he's very new to sitting- sit him on your lap facing outward and
allow him to lean on you and use your chest to hold his head, but giving
him the ability to look side to side without all of the heavy head work.
That alone is good exercises for a little guy. He's still holding it up, he
just has a crutch (your chest) and a little less gravity pushing him
downward. This also allows him to experiment with turning his head,
without losing so much control. 
You may just see a lit bulb go on, as they realize they can do it!

Since I touched on standing a little bit, I thought I would throw a few

of those exercises in, as well. 
In my opinion, the beginning of standing is easiest if you have complete
control. So I find that in the early stages it is best to use you and your
body. You sit on the floor with your legs out in front of you. While
holding baby under the arms, lift him enough to get his feet on the
In these early days, it can be fun to just allow them to raise and lower
their feet, as they test the floor beneath them. Almost like a bouncer
seat. As they progress in that position, let them stand on the floor,
with your complete under arm support, also letting him lean against
you as necessary. I would then find ways to help "prop" him
(against a couch, chair, table, toys, your leg, anything that can help
free up an extra hand for you). While standing there, offer toys that
can be played with. Help him to see that with the upright posture,
his hands are free to explore.

Axel is almost 26 months old, so my suggestions may or may not work for you.
It really depends though, of course, on many things.
He has Dandy-walker, hydrocephalus -shunted, rare deafness, hypo belly tone
and hyper arm and leg tone. His dandy walker stole all of his motor skills and
he's been working really hard for 2 years to learn everything.
Just remember that it's a big range and everybody does things at their own pace.
Your guy or gal may easily accomplish the exercises I mentioned and need more,
or you may have to work up to them.
Whatever the case is, just working with your baby will to teach them. 
Even if it takes weeks or months to accomplish a goal, work towards that goal
and you are sure to see results! 
Sometimes, we need to remember to keep our goals in clear perspective.
Don't shoot for the moon right out of the gate. Set that BIG goal, for sure, but
in the mean time, set small goals that will be more easily accomplished.
If they are too lofty, you and your baby will feel frustrated.
Instead, celebrate every (little and big) thing that you can!
Some people get to celebrate those awesome 1st steps and others get to
celebrate every small step it took to get there.

Take your time while exercising. Give yourself and baby time to adjust to your
requests. Rushing through steps could lead to confusion and disorientation.
Keep it calm and as fun as possible. You Definitely want him to enjoy it so he
will want to do it again and again!

Most of all, pour your LOVE and TIME into that baby and get ready to be amazed!

I really hope this information helped you and your little one!

If you have any questions, please ask, if I don't know it, I have
tons of resources to help you figure it out.

If ANY of this information seems confusing, please let me know!
I re-read everything more than a few times, but by then it all kind of blends

My goal is to help YOU, so please, let me. ;)
If you have any questions, tips, comments or progress you would like to share,
we would really love to hear it!

Please share my post with your friends that may benefit, let's get this
information to those that need it!! 

Have a wonderfully blessed year, Everyone! 

"Get Your Awareness On!"

"We Can't Know What We Are Unaware Of!"


Friday, November 29, 2019

Axel Turned 2, On The Perfect Day!

Hello all!

I hope you all had a great Thanksgiving!
I know we did!

Around our house, as Thanksgiving approaches, we get geared up for Axel's birthday! (On November 26th!)
It makes this time of the year even more special (and incredibly busy!!).
The fact that Axel has THIS birthday, is kind of a work of God (for lots of reasons, of course, haha).

This time of the year is really difficult for me.
20 years ago, on December 26th (1999) my beloved niece, Becca, passed away when she was 3.5 years old.
She was my moon and stars and it broke my heart in ways that can never be mended..

Fast-forward to 2005. My dad passed away very suddenly, just a couple of weeks before I was to cook my first Thanksgiving dinner, by myself.
That meal was quickly cancelled.
Missing my dad is something that hits me, often, still. He was with us until I was 23 years old, I often think of how unfair it is, that he couldn't stay longer. 

These days, I am very happy to contribute to the Big Meal, but I have never reattempted it myself.
Even thinking about those huge life events, has my eyes clouding up. Even after all of these years.
I'm thankful that he was here as long as he was but there will always be great sadness when I think that my children never got to know their grandpa.

So back to the reason THIS day is perfect!
With holidays a bit bleak and blue, God gave me the one thing that I could have NO CHOICE but to be happy about!
How could I possibly mope around and be sad with my warrior looking on!?

Definitely not!
God knew that with the sadness at this time of year, I needed my warrior to help me through it and give me the joy to persevere ♡

God planted Axel's birthday right between the 2 dates that affected me more than most other life events. 
His plan is always good.

And though I have woes (who doesn't, right!?) it is easy for me to push them away and look to the love shining in my boys' eyes. <3

I thought I would do some pictures and give an update.
It has been awhile and Axel has been working SOO hard!!

Pictures First!! <3
Beginning with a couple of early favorites, then much more recent pictures
Above; one of Axel's first pictures <3 - He needed to be in the oxygen tent for a short time (until we knew he had no breathing troubles), he was able to have it removed and use room air, very quickly.
Above; This pictures has always made me think of him as my little budda ♡

This is the gait trainer! 
He has to wear his AFO braces and shoes- side note, these are Billy shoes and half of the shoe unzips for easy on/off. We LOVE them!!

Another gait trainer pic. He loves to use his hands to move the wheels ♡
& about those shoes, Axel really likes to watch them while hes training. Lol

This kid was So impressed and proud of himself! & us too!! The pic was taken as he 1st accomplished going forward ♡

His therapy seat is a Big favorite! It allows him to sit up by himself and investigate toys from the vantage point that's easiest- above. We just have to hold the table on very firmly or he will bust right out. Lol
Showing off his skills!
Axel sporting his poncho! I made a cute little elf hat from the lining fabric.
Below: Axel's birthday pics ♡
All 5 of us went to the neat aquarium close to home (SeaLife Aquarium at Great Lakes Crossing mall) It was a lot of fun and we got to see so many cool things!
Afterward, we met some family at the Rainforest Cafe (across the isle♡) and enjoyed a wonderful dinner together. 
It was a great birthday!
Plus, Axel was happily passed around for cuddles often, so he wasn't complaining. Lol
He loved putting his hands on the tanks and looking. Some of them were fish bowl shaped and they were a lot of fun! He had several fish checking him out, too!

I don't even know where to start!

Axel is now able to hold his head up without support for over 40 seconds!
Gone are the wrecking ball days of him swinging it without restraint or care (mostly, lol).
Now, he enjoys looking around and can easily lower his head back to resting, with out crashing. He will even go onto his tummy sometimes and lift his head way up. THAT is the best exercise for him! It's even better because he is choosing to do it and not being forced or molded into it!

For months now, he has been scooting everywhere on his back! He resembles an upside down inchworm. It is the cutest! He has been directing himself like a pro, turning this way or that, to get to his goal. Almost as if he has already taken drivers' training!

He loves knocking towers down.
Every once in a while, I would build a tower and see what his reaction was. Usually it was nothing at all. THEN, a few weeks ago, I built a tower. This little boy scrambled over as fast as his back could carry him and knocked that puppy over! He was so smiley about it and proud of himself! Needless to say, we built about 100 towers that day. Now, I build towers for him almost every day. Over time, he will learn how to stack them by himself. For now, he watches me stack them and tries to knock it over as soon as he reaches it - ready or not. =D
(He did stack 1 block on top of another block {and THAT is huge news}, but he hasn't done it again, so that will emerge when he is ready.)

He has been using a gait trainer, too (pictures above). Each week, toward the end of PT, he gets to practice walking! The gait trainer is a mix between a wheelchair (with a bike seat and lots of buckles) and a walker. It holds him up and allows him to use his feet to move it. He is able to go backward easily (backwards is easier than frontwards). He also began to grab the wheels and can now move himself a bit that way, too! His hands move the wheels and its helping to teach his feet that they have to move to keep up. 
It took me a few days to write this post up and on Wednesday at therapy, he totally rocked the gait trainer!!! He went across a big room (frontwards and backwards) at least 6-8 times! His hand encountered an object, which has never happened before and he took himself back to it and held on for a few minutes, checking it out. His progress in the trainer is astounding! I know very well that my guy is capable of a great many things. But to be able to problem solve as he does and sort out how to get what he wants so quickly, is beyond awesome!
 There is a long way to go, but Axel is leading the way, while we proudly follow ♡
-You should know, though, that my definition of "So quickly" has a large range.. for example- his progress in the gait trainer is over the course of about 3 months. But we expected that he would need a lot of extra time, as he does with everything else. For us, quickly can mean a lot. But even if my definition is a little stretched compared to most, the meaning is very significant. 
We are still working hard on ASL and hand signs.
He recognizes a couple of sings and we are working hard to expand his vocabulary, but as expected it is slow going.
I have an incredibly long way to go, to be able to communicate in ASL (American Sign Language) but I am getting stronger with it.
Axel and I work a lot on 2 songs. Wheels on the Bus (which is a lot of fun and is only better when we see a bus, so we can talk about the song. He has no idea what wheels, people, windows ect. are, so when we see a bus, I sign that to him, while pointing and talking about all of the cool features of a bus).
There's also the ABC song and that is his favorite. He watches my fingers and smiles, then signs that he wants "more"! 

Axel is still in physical therapy (PT) twice per week, occupational therapy (OT) once a week and speech therapy 3 times, per week. His teacher of the deaf also comes several times a month (sometimes as many as 5 times, per month).
In January, he will begin an additional session in PT, 2 in OT and hopefully communication training with a Augmented and Alternative Communication (AAC) device specialist. -This is when they teach him how to understand and use a computer to communicate, ie. using pictures to select his wants/needs. We do that now, with actual pictures, but he's still learning what to do with them. 

His doctor appointments have slowed WAY down, too, and he is able to enjoy more time being a toddler ♡

He hasn't had to be inpatient at the hospital for sickness in just over 1 year, as well! 

If my "progress report" didn't quite get it across- Axel is doing fabulously! We are constantly in awe of him and he is spoiled rotten 😉

I hope you enjoyed the peek at Axel's progress!

Friday, November 8, 2019

I Did It ~ Custom Car Seat, Stroller, Wheelchair Blanket ~ No Coats for Kids!

Hey everyone!
I hope you are staying warm! Michigan went straight from hot to cold! It's 25* today, Brr!

Last summer, I began to worry about what this winter would be like, for Axel. 
Bitter cold, for sure!
He has been in a toddler car seat for awhile now.
Gone are the days of putting a blanket over his infant seat to keep him warm, while running into an appointment..

I was already worried about how we could keep him warm as a big boy. (It feels a little silly to worry about that while it was 80+ degrees outside, but the cold sneaks right up on us and I could not let it catch us by surprise).

In and out of the car as often as he is, he needed something great.

Did you know that kids in infant or toddler seats shouldn't wear a coat?
Consumer Reports- Dangers of Winter Coats and Car Seats!
The link above takes you to the Consumer reports website and tells you exactly how to make sure your baby's coat isn't too big for the car seat.

It isn't feasible to put a coat on and off while putting him into the seat.
It defeats the whole purpose.
It takes a few minutes to get him and all of his stuff into the car. That means his door is open for a couple of minutes and the trunk has to be open for a minute or 2, too. Plus all of the time it takes us walking to and from the parking lot or structure.
 When it is 15 degrees outside, even a little wind is too much!

So I began to think about what the perfect answer could be.
Friends, that could very well be my favorite question!
I start by asking myself:
What do I need to accomplish with the item;
How do I want it to look, fit, drape;
What could be added to make it better, easier, more functional;
Is it functional as intended (better or worse);
Improvements to original design;

With these questions I can accomplish quite a bit.
Using a notepad, I start to make notes and then draw (bad) sketches of my desired outcome. Sometimes, I am off and running by the end of that stage, but other times I need to get more detailed, so I can start to see it in my head. Width and length measurments, as well as many other informations can make a huge impact on any project. So checking those things over more than a few times, is very necessary.

 Fleece was definitely the fabric of choice. ✓

A blanket made sense- but would be too unwieldy and difficult, trying to wrap and unwrap him as he's being held.

Thus, Axel's poncho was born!
I could make it exactly as he needed it.
There isn't a coat/jacket or blanket anywhere that I can find, that is This custom and made to fit!

All of my favorite projects began as a thought rolling around in my head, adding and changing things as I go.

This poncho is no different.
 This isn't the best picture of the poncho in use, but my little guy doesn't care what I want my pictures to look like. lol

His head hole is custom fit for his head.

It HAD to have arm holes because there was no way he would be ok with no hands (unless it's freezing and mama says no way)!
But I didn't want him to have the freedom of free arms all of the time.
So his arms slits have zippers! Now, he can be closed up while outside and I can unzip his arms as soon as we are inside and warm, again.

I also added a set of snapping straps to the bottom of each side. They keep it from flapping in the wind and also from dragging on the ground or touching the wheels. It can just be snapped around the chair or stroller! 😍

I finished it off with a zigzag stitch, to give it that blanket like edging and I really like that touch.

I am working on mine and a couple others, already.
As soon as I'm finished testing my pattern, they will be in my Etsy shop! 

Not only do I make them for car seats/strollers/wheelchairs, I make them standard to fit kids and adults without extra equipment, as well!
In fact, mine will be the first and I can't WAIT to test it out!

If you aren't a fan on the over the head poncho style, a similar blanket could be just the thing for you!

I will share more pictures with you all, as soon as I am able!

I'm really excited and can't wait to spread the warmth!
Are your loved ones "covered" for the winter?!

I just BET I could get some Awareness On there, too! <3

I really hope you like my poncho!
Doesn't it just make you want to curl up and get cozy!?

Have a really fabulous weekend and God Bless!

Get Your Awareness On!

We Can't Be Aware of What We Don't Know!