Cedars Story

Real life Down Syndrome Awareness

Make an IEP profile

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Today was a hard day. I didn’t think it was going to be and I thought I was prepared, but sometimes those salty tears well up when we least expect them. This was the day I received the clinical basis that Cedar’s IEP will be based on. I decided to make an IEP profile.

We do plan to homeschool Cedar but want to access available therapeutic services in our district as a supplement to what we are providing at home. I decided that seeing his deficits on paper could be a strength as the more they are visible the more services he qualifies for, but that didn’t make it easier.

Related Post: Homeschooling preschool

He is far behind his peers in the areas that a school measures as important, but that doesn’t mean he doesn’t have his strengths and I like to focus on those. I have seen other families ahead of us on this journey make an IEP profile so that is exactly what I decided to do for Cedar. I decided to make an IEP profile.

What is an IEP profile? It is a way for me to show Cedar’s team of therapists, special education assessors and others what is really special about him an not just where he has deficits which is what all of the standardized tests show.

I really love the quote I saw by Mark Cronin, the father of John Cronin of “John’s Crazy Socks”

He says this:

“In schools, we tend to measure two things: analytical and verbal abilities. There’s a whole lot more to life than that”

You can see his brilliant statement on this youtube clip at 2:44.

So, I decided to run with that idea. I wanted to show Cedar’s team just what else made up Cedar besides the deficits that are seen on the standardized tests. He is a sweet and loving boy who is eager to please. He loves Elmo and his strengths are his determination and sensitivity. He doesn’t like it when others cry loudly, he would love to hug them and make it all better. He is so much more than the diagnosis that deems him to have an intellectual disability.

Our meeting is tomorrow and now I feel like I have something to show and teach them about Cedar.

To create your own profile simply go to Canva and use a resume template that suits your child for their IEP meeting.

Preschool and Down Syndrome- One mom’s decision to homeschool

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preschool aged child with Down Syndrome and details about homeschool

It’s no secret that we homeschool our children, but when the topic of Cedar comes up with most professionals, we are routinely advised that all state early intervention services will stop on his 3rd birthday. The answer to this, for the majority, is that your child needs to be enrolled in the school system to maintain services (speech therapy, occupational therapy, and physical therapy) as per an IEP or other specialized plan. But what about preschool and Down Syndrome? This is about one mom’s decision to homeschool.

I am a firm believer that each of us moms needs to be empowered to make the choice that best suits our own family dynamic. That being said, I have found that many moms are intimidated by the thought of sending their child with Down syndrome off to preschool, but they may also be intimidated by the thought of any alternative. I share our journey for those moms so they know there are options out there.

First of all, you don’t have to be a special needs certified teacher to teach your child at home. You also don’t have to have a teaching degree to homeschool. I believe that though I can certainly learn from teachers when it comes to different techniques and ways to engage a learner, but ultimately, I know my son better than any teacher can because I am with him more.

Our family has chosen to homeschool and Cedar’s education will be done in the same environment as my other children. What does that mean for his need for speech, occupational, and physical therapy? We will seek out these services via outpatient therapy and continue to use the techniques we learn on a daily basis when interacting with him at home.

So, how will preschool work? I am already approaching this as I have done with Cedar’s brothers who are 7 and 5, through play. We have recently been focusing on opposites. I shared on our Instagram account that we filled a bowl with hot water and one with cold and each time Cedar put his hand in one of the bowls I would say “hot” and sign the word and the same for when he touched the “‘cold” water. He loved the interactive plan and we were introducing the concept of opposites. He now knows the sign for “hot” when he doesn’t feel that his morning eggs are the right temperature.

Over the years of homeschooling I have found that the first few years of school (early elementary) are really just about learning through play and grasping concepts that will be built on later (math, spelling, etc) I want my children to enjoy learning and I realize that not every child progresses at the same pace. That is invaluable information as I begin to work with Cedar.

Related Post: Homeschooling a child with Down Syndrome

Know that if you want to look into the idea of homeschooling preschool the idea is that you are laying the foundation for later learning. When typical children to go preschool they are learning foundations (colors, shapes, letters, numbers, learning to interact with others and learning to sit for extended periods of time) for the future. This looks different for each child but our children need exposure to different environments and different learning opportunities. This is actually simpler than it sounds, and there are a number of great sites to give you ideas such as Preschool to Plato that I routinely get ideas from.

For example, if you take your preschool aged child to a fast food play area, they are learning first hand about interaction with others, this is the same that they learn if you are involved in any mommy and me groups or your church children’s programs. When you visit locations point out things you see, the red slide, the green grass. Expose your child to concepts like hot/cold, up/down, over/under. If they like television ensure that it is educational like sesame street, baby signing times, super simple songs where they can hear rhyming and see opposites, colors and shapes presented. This isn’t as hard as it sounds and you absolutely do not need a formal curriculum for preschool/kindergarten.

If you choose to homeschool, do keep involved in outpatient therapy as needed so that your child still has the added benefit of interacting with a therapist in the areas that he/she requires more help in. Then tell the therapist you would like “assignments” to work on through the week that you can incorporate into your time with your child.

I share this information so that moms know there are other options if they are not ready for their child to head off to school, or if they are truly considering homeschool as a viable option for educating their child with Down Syndrome. I have now graduated 1 child (typically developing) and I have 5 more to go, including Cedar. This was the best decision we ever made and I do have something to compare it to because we had our children in public school for a time before making the switch. It can be done, even with Down Syndrome and you can do it.

Related Post: 5 Lessons about homeschooling a child with Down Syndrome

Speech Therapy Apps for Kids

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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

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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

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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.

 

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