Cedars Story

Real life Down Syndrome Awareness

Speech Therapy Apps for Kids

by Leave a Comment

Cedar, like most children with Down Syndrome, has delayed speech. At 2 and 1/2 years old he has a number of signs he uses and he has a few words that he can say, the total of these two combined is around 20-24 words/signs that we can understand. Cedar does make sounds and I have heard a number of vowel-consonant babbles in his daily play. We have also worked with a speech therapist and we are currently doing sign language classes to help him learn more signs to communicate. I have been curious (especially since he loves my phone so much) if there were apps that would help him play and learn. Enter in Speech Blubs and their speech therapy apps for kids.

NOTE: This is a sponsored post as we agreed to use the speech blubs app and rate it in exchange for compensation. We are committed to honest reviews and want our readers to know that despite sponsorships, we will be honest about our recommendations.

little boy using a speech therapy app on a phone. Speech therapy apps for kids.

We first went in the app store and downloaded the app and I was impressed at the number of questions that setting up Cedar’s profile entailed. It was an easy process, taking less than 5 minutes, yet it seemed that the creators put some serious thought into tailoring their app to work effectively based on what a child’s individual needs are. I was asked about what languages were spoken in our home, whether he had been evaluated by a speech therapist, whether he had any diagnoses, whether he likes to listen to stories and if he points at things he likes, etc.

At the end of the questions I received a “report” detailing some potential issues that we should possibly work on through the app, things like pragmatics, comprehension and talking (no surprises there). Then I was able to look at the areas identified as issues and get detailed information about each area and what it entails.

Related Post: Top 5 speech therapy tips for children with Down Syndrome

The creators of the app recommend consistency in using the app and that consistency is, of course, the key to seeing success. We decided that we would commit to using the app to play with sounds and words for 10 minutes a day, daily. For us, the best time to do this was first thing in the a.m. when Cedar usually ends up snuggling in bed with us for a few minutes before we start the day. By choosing a specific time of day implementing this habit was not at all difficult.

Cedar using the app on my phone

So, what did we notice? Cedar was very interested in using the app, the children used in the modeling videos for sounds and words were engaging and there were bright colors and funny video clips that he quite enjoys. There are a number of children represented modeling the words which allows the user to see various cultures represented as well as boys and girls.

When we opened the app there were choices for us to pick if we wanted to work on sounds or whole words. Each sound or word has a sticker meme and is repeated 3 times. After hearing the word or sound repeated 3 times you can click the sticker meme and see a funny clip that coordinates with the sound or word (we love the ape that slips on a banana followed by an explosion…Cedar laughs and claps every time.

The first sound available for Cedar was a buzzzzz bee and he loved it. The exciting thing for me was that the second day of using the app, Cedar started mimicking the buzzzz sound which was new for him. After 2 weeks of consistent use, Cedar has picked up a few new sounds and has tried to mimic 2 of the words spoken. It is slow going for Cedar, but that is with anything. The speech blubs app is one we will continue to use as I am encouraged by the progress we are seeing though it is with consistency and is not an overnight explosion for him. There is also a website worth checking out here.

Have you used this app? There is a free 7 day trial available from the app store but I highly recommend using it daily during the free trial so you can really get a feel for the app and its components. I am also impressed by the low cost should you choose a subscription to the app. We are giving this app a 5 star rating as it is easy to use, fun for Cedar, and effective.

little boy looking at the camera while using an app to help with speech. Speech therapy apps for kids.

How I Respond When Someone Uses the Word Retarded

by Leave a Comment

how i respond when someone uses the word retarded

How I respond when someone uses the word retarded

It is an outdated term, one that over the years has come to have a very negative connotation for behavior or appearance.  It is a word often thrown around without a thought as to what it actually means to those with a disability.  We hear it daily as it is a word that has become engrained into our vernacular as much as so many others do. So, how do I respond when someone uses the word retarded?

I admit I myself had used the term, before becoming a special needs parent, and it was without name calling or malice, but instead referencing how a situation or person was behaving.  It was ignorance, like so many things before I learned better.

I fully regret my flippant use of the term now and realize that I may have easily hurt someone’s feelings without ever meaning to. How do you respond when someone refers to your child as “retarded”?  If you have experienced this there is no doubt a plethora of reactions you have had, whether shown or not.  But wait, as hard as it is not to respond out of a place of hurt, this can be a teaching moment if you will allow it.

Related post: When a Stranger recognized my son’s Down Syndrome

There is no secret that we continue to battle outdated stereotypes when it comes to our loved ones with Down Syndrome.  The world is still VERY ignorant about what our loved ones can be capable of.  They are often put into a box that says “they can’t” or “they won’t”  I’m guessing that’s because years ago, when the first recommendation of doctors and professionals was to institutionalize those born with Down Syndrome shortly after birth, they really didn’t reach their full potential.  Who could when institutionalized and not provided with a loving, stimulating, enriching environment?

In battling those stereotypes we will often come across very well meaning people who say things that make you want to face palm (or choke them) but we won’t condone the latter here.  Just recently I was chatting with a gentleman who was a bit older than me (so that makes him as old as Moses himself, right?) But seriously, his outdated stereotypes came from a place of growing up not ever seeing integration or what capabilities those with DS possess. In our conversation he said “Those little retarded ones (like Cedar) are just so cute and sweet.”  I am not going to lie, it stung like a hot poker.  He went on to say “retarded kids are always so loving.”

Okay, stop for a moment and breathe (I had to).  I know this man meant no ill intent.  I know his heart was not malicious.  I know he thought he was actually giving a compliment.  That is where I had to refocus my mind to before I responded to him.  This was one of those moments, like many I will have in the future, where I will make a choice.  A choice to remove the hurt from my response, and respond in love and with the mind of an advocate.

So, how do you respond to stupid, outdated, and often hurtful comments.  With kindness, compassion and the love I want shown to my son.  (and lots of deep breaths)

The response was something like this…”The term ‘retarded’ is one I don’t like to use because it focuses on so many negative things.  My son is already showing us that though he may be slower to do things, he is smart and capable.”  I went on to educate a bit on why there used to be such low expectations for those with Down Syndrome but that we are changing all of that with early intervention and raising the bar as far as our expectations.  I usually finish with something like, for all children, when you expect little, you get little, when you expect great things, you see great results.

I firmly believe that.

I am not naïve, I know that my Cedar will have areas that he will always be delayed in but if I don’t have big expectations for him, he has nothing to try to live up to.  It is kind of like if I expect my typical children to do well in school, they do and they try even when it is hard, but if I have no expectations for them, or I accept D’s and F’s when I know they are capable of more, that is what I will get.  This is my observation as the mom of 6 children, you often get what you expect.  I expect great things and I expect that together, Cedar and I, and the rest of our T21 tribe will effect a change in the way people see what the word “retarded” actually means.

How I respond when someone uses the word retarded

 

If you want to be sure you continue to help spread further awareness, consider checking out our jewelry designs to

When Should You Consider Orthotics for your Child

by Leave a Comment

When should you consider orthotics for your child?

When Should You Consider Orthotics for Your Child

I had wondered about the cute little braces I saw on so many of our social media friends as they were learning to walk.  I noted the parents who were claiming that the braces were huge in helping their little ones stabilize and learn to walk when my guy couldn’t even yet stand up.  But frankly, I wasn’t sure if we should consider using orthotics so I began asking around about these miniature braces that were being touted as a helpful tool to get my child standing, cruising, and walking.  So, when should you consider orthotics for your child?

Related Post: What are SMO’s and AFO’s and How Do They Help?

As is common with Down Syndrome, hypotonia, more commonly known low muscle tone, can and does play a big role in the mobility of our children.  Often children with Down Syndrome crawl, stand, cruise and walk later than their typically developing peers and that is often due to low muscle tone.  But back to that question, when should you consider orthotics for your child?  The short answer is, as soon as you see a problem.

Let me clarify here, by problem I mean something that may hinder your child’s progress.  For example, Cedar has a tendency to pronate his ankles inward when he stands, something that wasn’t initially obvious until he began pulling to stand and holding onto furniture in the standing position.

Image Courtesy of VeryWell Fit

 

When the ankle and foot does this it hinders the child’s ability to properly walk, cruise and stand.  It can also lead to further delays in walking as well as an abnormal walking pattern that can later cause problems with body alignment and even back problems if left untreated.

Cedar Rocking back on heels while standing

I also noticed that Cedar would often lock his knees while standing and rock back on his heels.  Our physical therapist let me in on the reason behind this…due to his poor tone Cedar is trying hard to figure out how to remain standing and it is less work to lock your legs than to continue balancing, but this is not good for future mobility.

In seeing all of these things I began asking our physical therapist for her thoughts on these braces.  She initially said that some children benefit greatly while others wind up walking fine without the added support.  So, we waited a bit.  However, I kept seeing more of our online friends turning up with these braces and I wondered if getting Cedar some would help him.  That is when I not only further considered it but really had to go into full-on advocate mode because with some insurance providers (like ours) it can be a bit tricky to navigate the process of obtaining braces

Read about our experience here: How Do You Get Your Child AFO Orthotics?

We finally did end up navigating the whole process and were able to secure a fantastic orthotist who took countless measurements of Cedar’s feet to ensure that the custom made products we would be getting from Surestep would be exactly what he needed.  We initially had the choice between Surestep and another brand called Dafo but when I viewed the products in our Orthotist’s office I liked that the Surestep brand was a hard brace but seemed less cumbersome and seemed to allow Cedar’s foot to still have more flexibility and mobility than the Dafo would.  Being that I hope to eventually get Cedar to where he does not need bracing I thought that taking the “less is more” approach was going to be a good fit for us.

I have noticed improvements now that Cedar is using these orthotics as he is able to step with assistance and cruise better and for longer periods when he is wearing his AFO’s versus when he is not. I have read quite a bit about how important it is for children with any time of cognitive disability to be able to interact with their environment in as much of an age-appropriate way as possible and for Cedar this means interacting in a way that allows him to be upright, standing.

What about your child?  When Should you consider using orthotics?

  1. If your child pronates while standing
  2. If your physical therapist suggests it
  3. If your child is not progressing past pulling to stand or standing while holding onto something
  4. If you feel that your child would benefit from an evaluation for orthotics

 

The orthotics we use for Cedar are custom designed for his feet by Surestep and are not comparable to an “off the shelf” type of orthotic where the child is not custom fit.  These are only available by prescription which can usually come from either your physical therapist, pediatrician or a specialist.

Note that this is a sponsored post and as such may include information linking you to our affiliates.  We promise to only endorse products we actually use and love.

Sources:

https://www.podiatrytoday.com/key-insights-orthotics-afos-and-casting-kids

https://lermagazine.com/article/orthosis-use-in-children-with-down-syndrome

We have seen great improvements for Cedar, have you gotten orthotics and seen an improvement in your child too?  We would love to hear from you in the comments section below.

 

Down Syndrome Inclusion and Age

by 4 Comments

Down Syndrome Inclusion and Age

I had no idea of the amount of advocacy and work that most special needs parents faced when it comes to the inclusion of their children into mainstream society. I was one of the blissfully ignorant parents of typical children who never had to consider such things. However, the last 2 years have shown me just how much advocating goes into being a special needs parent. The advocating never stops from teaching society about our children, to advocating for their medical tests and needs to figuring out this whole special needs education arena. However, there is one thing that I am at stark odds with and I am the minority in the majority of my special needs parenting peers. In considering inclusion and age, I feel that chronological age does not necesitate age based inclusion. Down Syndrome inclusion and age, let me explain…

My son is now approaching the age when most parents are considering preschool. In the state I reside in (as in most of the 50 states) there is a state based early intervention program that ceases at age 3 years old and transitions children over into the school districts to attend preschool and resume services (physical, occupational and speech therapies) as well as to begin educational services.

Children with Down Syndrome have delays, that is no surprise. They are also usually significantly physically smaller than their typical peers and their growth both developmentally and physically is significantly slower than those in the general population.

So, what am I getting at here? Though I know that most parents would be shouting from the rooftops that age based inclusion needs to be fully incorporated from the earliest age, I wholeheartedly DISAGREE. My son at almost preschool age, is nowhere near ready to be in an inclusive classroom with same chronological aged peers. I want him included with typical peers, but I look at this quite a bit differently.


I feel my child with special needs is better served by being in an inclusive environment based on his developmental age, not his chronological age.

The argument I have heard is that if children who are developmentally delayed are placed with children who are developmentally their level they will not strive to meet the levels of development that are age appropriate. Guess what… my child is not going to meet the developmental levels at the same pace as his typical peers, that is part of what makes Down Syndrome a condition. My son has been around same chronological age typical peers and around peers that are his developmental age. He does better with those who are at his developmental age. For him, that is about 1-1.5 chronological years behind. However, I have noticed that even children who are on his developmental age level can teach him things, and he them.

For example, Cedar is not a fan of crawling, in fact, he hates it. We work on 4 point crawling weekly in physical therapy but he would much prefer his own version of scooting around on his bum than crawling on all fours. Now, developmentally that is a skill mastered by the time a child is less than 1 year old. Children my son’s chronological age have usually mastered walking, jumping, and sometimes even skipping. To put my child in a room full of peers of his own age when he cannot yet walk puts him at a serious disadvantage. On the flipside, to put him in a room full of developmental peers who are crawling, standing, cruising and starting to walk has caused his little wheels to turn and I have seen him attempting to emulate the physical behaviors he is seeing.

I imagine that this will go on with each developmental milestone. I believe that it would set my child up for failure if I pushed to have him included in a chronological age classroom of peers based on his birthday. I also feel that having him sequestered in a special needs classroom would not serve him well either. Our choice has been to homeschool our children, and this choice will remain with Cedar, but even in other arenas, church, clubs, recreational activities, etc. I feel my child is better served to remove the “age” basis for peers and just to put him in a position where he is surrounded by children of varying abilities, but who are closer to where he is developmentally.

Related Post: Homeschooling a child with Down Syndrome

I had a chat with our occupational therapist about just this topic, she actually served in the public school system for years and she stated that she fully agreed with my line of thinking. If my child were going to a school, I would want him placed a grade or so behind, in fact, I wouldn’t even think of preschool until he was probably 4-5 years old. The interesting thing is that most children who have Down Syndrome are physically smaller than their peers so unless everyone was continually checking out the birthdate and year…no one would really be the wiser.

So, for what it is worth…I disagree with the idea that inclusion has to be based on the year a child is born. Inclusion is what we will practice for our entire lives, being included in our community, our place of worship, and our educational choices but this does not need to be dictated by the year we are born.

Organize Medical Information for Your Special Needs Child

by 2 Comments


In the beginning, I had to organize medical information in a medical binder for my special needs child, and that was just to keep my sanity.

The first thing that slams into you is the weight of the diagnosis, then, following is usually a swift kick from some of the various findings at numerous appointments for eyes, ears, heart, and lungs.  It is all seriously so overwhelming in the beginning that it is easy to lose track or to even be unsure of how to organize it all.

[Read more…]

CedarsStory.com is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to amazon.com.
Terms of Use, Privacy, Copyright, Disclaimer

Top Posts & Pages