Cedars Story

Real life Down Syndrome Awareness

What is a Down Syndrome Clinic?

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what is a down syndrome clinic

What is a Down Syndrome Clinic?

If you are newer to the world of Down Syndrome there is so much information to digest from recommended screenings, to alternate growth charts, early intervention and soooo many therapies.  You may not even be aware of the availability of clinics to assess and help you navigate all the areas that your child is progressing in as well as areas that you may need to offer your child additional support.  This is where a Down Syndrome clinic comes in and can be an invaluable tool to make sure that your child’s doctors and therapists are not missing anything.  So, what is a Down Syndrome clinic?

A Down Syndrome Clinic is a cooperative collaboration of many different specialties all available to see your child in a team approach.  These clinics typically offer a developmental pediatrician as well as physical therapists, occupational therapists, speech therapists and several other clinicians.  The goal is to evaluate the child and see if any further supports can be put into place as well as to connect the family with local resources to aid in the progression and growth of the child who has Down Syndrome.

what is a down syndrome clinic

I had heard of these clinics but we had our first experience when Cedar was about 18 months old.  I believe the recommendation is that when possible, a child is seen at a Down Syndrome clinic annually.  We were advised for our appointment to allow for 2-3 hours and none of that was downtime.  We were greeted by a team of specialists that included a dietician, speech therapist, occupational therapist, and physical therapist.  We were taken to a room that looked more like a play area than a hospital exam room and Cedar was given toys, bools and other objects while the professionals in the room interacted with him in a playful manner.  I observed that they were making notes as they observed him, but to Cedar, he just gained a roomful of new friends.

The NDSS has compiled an amazing map of Down Syndrome clinics in the United States so you can see just how close you may be to one of these fantastic resources.

what is a down syndrome clinic

We had been asked to bring some of the foods he regularly eats, and after playtime the therapists watched him have a snack and observed his feeding processes.  The team exited and convened to discuss any recommendations they had for us prior to sending us on to the see the developmental pediatrician.  Recommendations included some local resources for feeding therapy and orthotics as well as literature for other things we could work on.

I was prepared to not gain any new information as I feel we already have an amazing pediatrician who stays on top of all the latest recommendations for Cedar so I almost just went as a formality because we were “supposed” to.  However, I did gain insights and I learned about some amazing new resources as well as learned some more about what will likely help Cedar progress in some of the areas we were still struggling with.

I can see this being so valuable to other families, especially if you use a pediatrician who is not overly well versed in Down Syndrome.  We learned of an amazing resource called the United Healthcare Children’s Fund.  Many families struggle with the out of pocket expense of private therapies when they feel that additional therapy beyond what is provided free of charge by their state is needed.  This resource is amazing and is not for people specifically who have United Healthcare Insurance but is for families with private insurance and often high out of pocket deductibles.  What it does is provides funding for therapies, durable medical equipment, and surgeries to help families when there are gaps in their insurance coverage.

RELATED POST: Physical Therapy Tips

After the appointment was over we were given some great advice and left feeling as though all aspects of Cedar’s development were well assessed and we had a clear plan of what we needed to do over the next year to support him in reaching his goals.  We then received a detailed printout from each of the specialists a few days later and can use that as a benchmark for his development moving forward.

RELATED POST: A Speech Therapist’s  Feeding Tips for Your Child with Down Syndrome

Our experience was with the Cincinnati, Ohio Children’s Hospital, have you been to a Down Syndrome clinic and if so, what was your experience?

what is a down syndrome clinic

 

 

The Best Planner for Special Needs Moms

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I have had a love affair with the idea of being organized for years, I love planners, I love the way they feel, the way they make me feel ready to take on the day, the way I feel like I can handle it all because I have a place to keep track of everything. Then, I became a special needs mom. The regular planners that one can purchase at any cute boutique or office store just don’t fulfill the extensive amount of information I now need to keep track of. Let me tell you a secret though, I found the Best Planner for Special Needs Moms.

It’s called the Glory Days Planner and it was designed by a fellow special needs mom, Amanda. Amanda has a beautiful daughter named, Aurora, who like my Cedar, has a little something extra that surprised her family at birth. Amanda found herself a bit overwhelmed with all of the information that she now had to track, more doctors appointments than ever before, therapies, daily tasks, and that is only for one of her now 3 children. You can see her story here

Hoping to one day provide a business for her daughter and to also meet the needs of so many special needs parents coming after her, Amanda has designed a product that has been so needed and missing for so long. Checking off each of those therapy boxes and keeping tabs on weekly goals is a huge help to all mamas.

So what is included in this planner that makes it so special?

  •  Dateless Design 
  •   2020/2021 full calendar overviews 
  •   Thick, pure white paper
  •   Space for schedule, to-do, and a section for notes / meal plan
  •   Daily self-care check in, appointments and therapy reminder boxes 
  •   One day per page + shared weekend pages
  •   Weekly two page therapy tracking pages 
  •   Full month views
  •   Monthly intention setting and goal tracking sheets 
  •   Medications, supplements and Doctors note pages in front
  •   8 notes pages in the back
  •   Hourly schedule from 6am to 10pm
  •   1 page sharing “how to use your planner” 
  •   Quotes of encouragement  from parents on every page 
  •   Simple light blue color throughout
  •   Gold, sturdy wire-o binding
  •   Hard cover with gold foil details
  •   Protective gold corners
  •   Gold foil monthly stickers 
  •   Sturdy tabs

I’m here to say that this is a product that you need, there isn’t another quite like it and I am happy to also help support Amanda and her beautiful daughter, Rory as they help so many other mamas navigate the road as a special needs parent.

Go get your planner today

Daycare and Down Syndrome Concerns to Consider

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Daycare and down Syndrome concerns

Daycare and Down Syndrome Concerns to Consider

What is a parent to do when working outside the home is a necessity?  When you have a special needs child, in this case, one with Down Syndrome, there are some concerns you should consider when choosing a facility for your child.  We spoke with a New York based physical therapist who has 22 years of experience and he shared that with Daycare and Down Syndrome concerns to consider include a term he uses called “Container Syndrome.”

Jake Kreindler is the founder of the instagram account @getyourbabymoving and has some great points to share:

 Babies with Down Syndrome have some unique challenges – low muscle tone, delayed milestones,  and potential cardiac issues, to name a few. When it comes to getting your baby’s gross motor skills up to par, it goes without saying that parents need to be vigilant about making sure that the odds are stacked in their favor.
     In my 22 years of practice, I have done numerous sessions with babies at daycare facilities and at babysitter’s homes. While most are caring and loving, they are frequently  trying to take care of several babies at once. This leads to what I call “container syndrome” – placing kids in one “container” for long periods of time, to keep them from moving around and requiring more attention.
     I have lost count of how many times I will enter a home or facility and see one baby in a playpen, 3 kids in high chairs, a baby resting in a swing, another kid sleeping in a carseat, 5 kids in exersaucers for hours on end,…..well, you get the point!
      Babies, especially children with gross motor delays or tendency towards delay, like our precious babies with Down Syndrome, need lots of practice time on the floor. When in daycare down syndrome concerns include lack of floor time. They need the freedom to try new positions and milestones,  explore toys, and observe their environment.  Placing children in “containers” for long periods of time is holding them back from their potential and function.
     Sadly, speaking to the staff rarely yields changes. Changes need to come from the directors, owners, and authority figures. As parents, you have the power to affect changes! Speak to the person at daycare with the highest authority and explain your concerns.  Educate them on the importance of tummy time and time spent on the floor. And if you get nowhere with them, seriously consider another facility or option.
     I need to clarify one point: putting a child in something for up to 15 minutes a day will not cause any harm. The harmful part is when the container becomes the babysitter!
      So what can you tell the daycare to ensure that they ARE stimulating your baby’s physical development? Ask them to place the baby in his or her MOST AGE APPROPRIATE, SAFE POSITION. So if, for instance, your baby is a year old and can bear weight on her legs, even if she isn’t walking, ask them to stand her at surfaces with toys. Or if she is 7 months, but not yet sitting, place her in a sitting position surrounded by pillows in case she falls. If your baby is younger than 7 months, place her on her tummy as the default position.  Reaching milestones require the brain to reach new levels of maturity. By challenging your baby with age-appropriate positions, the brain will provoke these new levels of maturity and help reach gross motor milestones.
     Babies with Downs Syndrome are some of my favorite people on earth!! Education is the first step toward advocacy.  Feel free to reach out to me at getyourbabymoving@gmail.com or on Instagram at @getyourbabymoving.
daycare down syndrome concernsJake Kreindler,  M.A., P.T is a New York based Pediatric Physical Therapist with 22 years clinical experience. He is certified as a Level 3 Cuevas MEDEK Exercises practitioner. He has published numerous articles, educating parents on children’s development.  His latest project on Instagram,  @getyourbabymoving, provides parents with illustrated tips and tricks. His goal is to eradicate gross motor delays in babies across the world through education. He can be reached at getyourbabymoving@gmail.com or on Instagram at @getyourbabymoving. 
Daycare Down Syndrome Concerns

Finding Shoes That Fit Over AFO Braces

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Finding shoes that fit over AFO braces


Finding Shoes That Fit Over AFO Braces

Once you have decided that orthotics will be a benefit to your child, (and if you are still in that phase be sure to check out this post here) you will likely encounter the next hurdle and that is shoes. Yes, my friend, shoes that will actually fit over the new custom braces can present a big challenge as your child will need a good pair of shoes while cruising around wearing the new stabilizing orthotics. So, never to let you down, here is a super helpful set of tips for finding shoes that fit over AFO braces.

Related Post: What are AFO’s and how do they help?

Getting Used to Bracing

If you have just gotten your child’s braces you will likely enter a phase of slowly getting them used to wearing the braces. Our orthotist recommended a few hours a day and gradually building up until Cedar was wearing them most of his waking hours. I found that for us, this worked well and initially, while on carpet, we often did not use shoes while we were getting him used to the AFO braces.

Finding the right socks to do the job

For us, we had the best luck when we use very thin socks as opposed to some of the thicker infant and toddler socks on the market. Having the thin socks means that I don’t have to worry about yet more bulk when looking for those perfect fit shoes. These are perfect (not to mention there are a lot of them since our dryer likes to eat socks)

Time for shoes…

I normally prefer to shop online and I love velcro strap shoes (totally easy on a mama) but this was not a win for us while trying to find great shoes for the braces. Many times the velcro strap that goes across the foot will not close over the bracing making it a no win. Another tip to consider when looking for shoes that will fit over AFO bracing is checking to see if the sole of the shoe (on the inside) is removable as this can provide just that little bit of extra room needed for the braces to fit comfortably in the shoe. Oh, and don’t hesitate to size up or size wide when searching for the perfect fit.

Related Post: How do you get your child AFO orthotics?

After heading to our local shoe store and subjecting poor Cedar to an array of shoes…this is what we came up with as the best shoes that fit over AFO bracing for little ones.

Cedars Story- Finding shoes to fit over AFO braces

So here it is folks… our picks:

Converse lace up shoes seem to fit great but keep in mind you will still see the braces and sometimes they can get pulled off easily (depends on how persistent your child is)

K Swiss Classic Pro Lace Up Shoe. These had a great fit but keep in mind you will have to lace em up.

Adidas Baby Baseline velcro shoe. This is the first Velcro shoe I have found that will actually fit across the braces and close properly.

Lastly, this shoe was not in the video as we found it later but we needed a good church shoe for dress up. This has been Cedar’s favorite and I find that you can almost not see the braces at all in these.

We have seen such improvements for Cedar in his ability to cruise, and stand for extended periods of time since we had him fitted for his custom orthotics from Surestep. Finally finding the right shoes to complete the process was huge for us.

If you are using orthotics, what shoes have worked for you?

NOTE: This is a sponsored post that contains affiliate links. These links do not cost you anything extra but do help with the maintenence of the site.

What Can You Do to Help Your Child with Down syndrome Walk

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what can you do to help your child with down syndrome learn to walk

What can you do to help your child with Down Syndrome walk?

Children with Down syndrome typically walk later than their typical peers.  Though this is true, there are some children with Down syndrome who seem to have no delays in their gross motor skills and yet others who, like my Cedar, seem to be in no rush to cruise or walk solo.  What is a mom to do and what can you do to help your child with Down Syndrome walk?

  1.  Make sure you have a good therapist

First and foremost make sure you have a good physical therapist who works well with your child and with your family.  Know that sometimes just because someone happens to hold a degree does not necessarily make them a good fit for your child, so trust your gut.  Ask your child’s physical therapist to show you exercises you can do with your child on the days you are not in therapy.  If you are only getting statewide free therapy through an early intervention program and you feel your child needs more, simply start asking around and seek out services.  I have found that being an advocate for your child is absolutely a requirement when your child has special needs.

2. Set up a therapy schedule.

I don’t mean the days that you go to therapy but the days where you intentionally spend time outside of therapy working with your child at home.  Incorporate therapy into play when possible and always make it fun.  Scour the internet for ideas and do things like have your child pull to stand and utilize push toys to help them get moving.

3.  Ask about orthotics

This is one that you may have to push for if your therapist is a little lax about recommending orthotics.  It seems as though most children with hypotonia (which is common with Down syndrome) benefit greatly from being fitted for orthotics be it AFO’s or SMO’s.  If you notice that your child’s ankles turn in or out when bearing weight on feet, your child locks his or her knees trying to keep balance or your child rocks back on heels while trying to bear weight, your child may benefit from orthotics.  We have seen a great improvement in Cedar’s ability to stand for extended periods of time and his cruising when he is wearing his AFOs that we got from Surestep.

 

Related Post: What are AFO’s and SMO’s?

4. Keep working at it

Though it seems like sometimes all your hard work is in vain, sometimes our little ones surprise us out of the blue by doing something unexpected that we have been encouraging them to do and then one day…they just do it.  Tune in to your child, see what motivates them.  For us, once we finally got Cedar some AFO’s (ankle foot orthotics) we saw marked improvement in his endurance and desire to move.  We also found the EUREKA moment that we could entice him to cruise around our coffee table if he was chasing after mom’s cell phone or some popcorn (hey, whatever works, right?)

5.  Don’t beat yourself up

Just because you see another child who has Down Syndrome walking at 12 months doesn’t mean there is anything bad if yours is 24 months and still not walking.  Unless there is some other underlying medical condtion besides Down Syndrome, I have yet to see a child with Down Syndrome not eventually walk, yours will too.

 

Related Post: How do you get your child orthotics?

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