Dawn@cedarsstory.com, Author at Cedars Story

Breastfeeding Your Baby with Down Syndrome- 5 tips

March 10, 2021 by Dawn@cedarsstory.com 1 Comment

Breastfeeding can be hard work. This is true under the best of circumstances as it requires patience, time, and a concerted effort. When you have a child born with Down Syndrome, the patience, time and concerted effort are just magnified a bit more. However, breastfeeding a baby with Down syndrome can be successfully done by keeping just a few things in mind to help.

When you have a new baby, and a desire to breastfeed there are always obstacles. Most babies, when given a chance, will learn to nurse well. There are of course a few exceptions, and with special needs babies, this is so much truer.

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What is a Down Syndrome Clinic?

January 30, 2021 by Dawn@cedarsstory.com 5 Comments

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.

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.

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.

Afraid of Down Syndrome

January 3, 2021 by Dawn@cedarsstory.com 4 Comments

I am the mother of a child that most people fear. Yes, you read that right. Children like my beautiful little boy terrify most women. Let me clarify for you what I mean. To look at this precious face you could never be afraid of him, he is joy, love, hope and so much more. But the world says otherwise and statistics continually demonstrate that women are afraid of down syndrome.

That is why in the United States 67% of prenatal diagnoses of Down Syndrome end in pregnancy termination. Wait, before you shake your head and leave because you know where this is going I want to tell you that I don’t blame those women who made that choice. Here is why…

Fear is a powerful motivator. Fear will cause us to make snap decisions, fear will cause our heart to pound, tears to fall, fists to ball up and bring about an impending sense of suffocating dread. Fear will also cause a well meaning, loving woman to make a mistake because she is afraid. That same woman who will likely later see that those with Down Syndrome aren’t as scary as she feared. She will likely regret what fear led her to do.

No, I don’t blame the woman who, out of fear chose to be a part of that 67%. I blame fear. Fear is not something that is given by God, though our children are. Fear is a tool that is used to tell women that they can’t. Fear is a tool that is used to tell women that they won’t be able to be happy any longer, they will have a dismal future, they will be sentenced to the doom of caring for a child with special needs for a lifetime. This is what fear has told women.

Doctors believe this fear too. At least the doctors who have no reference point in the real world for Down Syndrome. Doctors who tell women that their children can’t, their children won’t, and that it is likely their child will not survive anyway.

What does Peanut Butter Falcon mean for Down Syndrome?

December 13, 2020 by Dawn@cedarsstory.com Leave a Comment

With a name like Peanut Butter Falcon one is left wondering what kind of a film this actually could be. I had heard a quiet buzz in the Down syndrome community about an upcoming film where the star was a young man with Down syndrome. This, I want to see. Like most parents to a child with Down syndrome, I want to see a glimpse of the hope that is possible for my child’s future. Not every individual with Down syndrome has the same skillset but acting in a big screen movie, memorizing lines, and giving interviews are all pretty amazing things that offer hope to parents newer on this path. So what does Peanut Butter Falcon mean for Down syndrome?

It means seeing the real capabilities.

It means watching in awe at the humor an actor with Down syndrome has.

It means being excited that producers are interested in portraying the life of someone with Down syndrome.

It means exposing society to individuals with Down syndrome beyond their occasional exposure in public.

It means hope for what may be.

I grabbed some movie tickets and my older children and we headed to check out the film. Let me say first though, I am pretty particular about what I let my children watch and there is a ALOT of foul language in this film. Like ALOT and not from the main character with Down syndrome but from the Hollywood star Shia Lebeouf. That was literally the only negative I have to say about the entire film. The language was meant, I’m sure, to personify the fishing/crabbing lifestyle and fringe of society where Shia’s character originated but at least for me, I could have done without the language.

From the opening of the film I laughed, I cringed, I cheered and I watched intently. I was so pleasantly surprised that the producers and directors added humor without making us laugh AT the main character. There was nothing I found offensive about the portrayal of Zack, the main character with Down Syndrome. I feel that the directors skillfully showed his disability in a way that was accurate. His character seemed very true to life, believable and the struggles portrayed seemed to accurately capture the struggles that are faced by individuals with Down syndrome. His naivete and child-like trust were not overly exploited but rather demonstrated and then protected by the character played by Shia Lebeouf.

The storyline was a simple one, Zack wants to be a pro wrestler and has a dream of making it to a wrestling school far away from where he is staying. The difficulties of someone with developmental disabilities going this trek solo are clear but the humor added in by the unlikely pairing of Zack with a fisherman turned convict on the run is evident. The story adds in some reality smacks with someone calling Zack a “Retard” and Zack recounting times when he was told that he wasn’t able to do anything because of his Down syndrome. There are also two scenes that are cringeworthy when Zack is mistreated but some very important points are brought out as well. And spoiler alert…in the end Zack wins everything and comes out on top.

A movie like Peanut butter Falcon means so very much to the Down syndrome community because it shows that there is an audience for films like this. It shows that casting an actor with Down syndrome is a worthy choice. It shows the world that someone with Down syndrome has disadvantages… but also has the same humanity as everyone else.

It exposes society to a person who is not the “normal” Hollywood actor and we need that. The film is no longer in theaters but can be rented or bought on Amazon, I highly recommend it (just remember my earlier mention of the language in the film)

*Affiliate link included

The Down syndrome community has come out in force to view and comment overwhelmingly positive on this movie. Shia Lebeouf himself, a well known Hollywood actor, has credited his co-star for saving his life and has shared multiple times about the true friendship that they have developed off-screen. In fact, after watching the film I watched countless interviews with the actors and stood amazed at just how touched the other actors in this Huckleberry Finn type film were by their interactions with the real life “Zack”

October Down Syndrome Awareness Facts- Day 2

October 2, 2020 by Dawn@cedarsstory.com 2 Comments

This is day #2 of my Facts about Down Syndrome to play my part in spreading awareness. I was quite surprised when I read this fact, that 1 in 700 pregnancies are, in fact, positive for Down Syndrome. Trisomy 21, Down Syndrome, is the most common genetic abnormality known. But wait, if 1 in 700 pregnancies result in Down Syndrome, why don’t we see more individuals with Down Syndrome in the general population? This piece of information is hard to swallow but it is likely because in most developed countries fear permeates and it has been estimated that between 60-90% of mothers who learn of a Down Syndrome diagnosis prenatally will terminate their pregnancies.

One of my greatest hopes is that by running this site, and spreading awareness of just how un-scary a Down Syndrome diagnosis is…maybe someday a mother will read something here that will encourage her to continue her pregnancy. Even if a mother feels she is ill-equipped to deal with a child who has special needs, there are a slew of parents who are willing to adopt and parent those children. Just click on and read these, a few that have been shared on this site about adoption.

Max & Jude: Down Syndrome Adoption

Choosing Wyatt

Peanut’s Forever Family

Though the diagnosis was scary at first, ours was a birth diagnosis, I know that I wouldn’t have it any other way. I purposely chose not to have any testing done during my pregnancy because I would not consider anything besides carrying my child to term, regardless of any diagnosis that testing would show. Cedar has been nothing short of the unexpected blessing we never knew we wanted, but wouldn’t give up for the world.