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The sibling bond- Special Needs Siblings

October 14, 2018 by Dawn@cedarsstory.com Leave a Comment

The Sibling Bond…Special Needs Siblings

I captured this moment this morning and I felt compelled to share. You see, often we special needs parents fear the impact of having a special needs sibling will have on our other children. We have 5 other children besides Cedar so the fear was gripping in the beginning. Will they resent him, will they feel burdened, will they be embarrassed… and so many other concerns.

A parent worries, it comes with the job description I suppose.

What sage advice can I share about the impact that having a sibling with Down Syndrome has had on my 5 other children?

It has made them better people.

My children all know that Cedar has Down Syndrome and we have explained to all of them exactly what that means. My 18 year old who is studying to be a pediatric RN understands the science behind it, my 15 year old explains it to her friends, my 12 year old wears tshirts and leather bracelets celebrating his brother, my 6 year old tells everyone who will listen and also boldly points out anyone he sees that also has Down Syndrome like his brother (we are working on this one…lol) and my 4 year old can tell you that Cedar is just learning a little slower than some other kids and that he has an extra 21st chromosome.

But, that doesn’t tell you what being a special needs sibling means… It means our family is closer than ever before. It means that all of my children rally around Cedar and act as though he belongs to them alone. It means that they seek out individuals with special needs in public, rather than shy away from them. It means they all tell everyone he is their favorite sibling.

All that worry I had was for nothing.

If you are new on this path let me tell you that your children will take all of their cues from you. If you treat your children like there is something wrong then others will too, but if you treat your child with special needs just like the rest, you will be pleasantly surprised at how your other children respond.

We have always strived to teach our children to be kind to others, I think they really get the lesson now.

If you are worried that adding more children when you have a child with special needs will be problematic for the siblings, let me assure you that again, you may just be pleasantly surprised.

To Test or Not- Prenatal Testing and Down Syndrome

October 11, 2018 by Dawn@cedarsstory.com Leave a Comment

To Test or Not to Test for Down Syndrome

Last year, the news of Iceland’s low rate of babies born with Down syndrome brought the subject of prenatal testing to the forefront of discussions among parents and the Down syndrome community as a whole. Some people were very vocally against them stating that people use the test to determine if they want to terminate. Others were still in support of the tests because knowledge is power. So, to test or not to test for Down Syndrome?

Before I continue, I want to clarify something. There are two types of prenatal genetic testing: screenings and diagnostic. Most pregnant women will get screening tests, or the option to have them, as part of their routine OB care. They typically comprise of ultrasounds and blood tests. Diagnostic testing is typically offered after a screening test has shown a risk of something. Diagnostic tests are invasive and do carry a small chance of miscarriage. But there are other risk factors that could make the risk of miscarriage a risk worth taking.

I have seen a lot of varying opinions on prenatal testing. The most common are:

“I will love this child no matter what and will not end this pregnancy, so what is the point?”

“I need to know if this child has any major conditions in case I need to terminate.”

“I will do screenings but there is too much risk with invasive testing so I will stop there.”

“I need to know so I can be prepared.”

When I found out I was pregnant with my daughter, I had prenatal screenings done. I had a nagging feeling that I needed to. She was measuring too far to get the Nuchal Translucency Scan done, but we went ahead with the Quad Screen later on which told us our risks for genetic abnormalities were very small. When we had the anatomy scan done at 20 weeks, they found a “soft” marker for Down syndrome. This led to another scan, where they found the same marker and it left us with one of three decisions: 1) do an blood test which is another scan but catches most cases of Down syndrome, 2) have an amniocentesis done to give us a yes/no answer, or 3) do nothing.

I remember us sitting in the genetic counselor’s office, listening to the statistics, her chances of having Down syndrome, the tests available to us. It was a lot to take in and overwhelming, but there was one certainty to me. I needed to know for sure, a concrete answer with no room for “What if…..” or “Maybe….”. We already loved our unborn daughter, but I needed to know for sure so I could be prepared. I could not let my anxiety have any wiggle room for hope or doubt in another screening test. I could not spend the next 17 weeks going through what I was feeling right then. We opted for the amniocentesis. We knew the risks and trusted the experience of the doctor.

The next day, we received the Trisomy 21 diagnosis. It was hard news to hear, but at least we knew for sure. I reached out to support networks and Down syndrome associations. We had the extra doctor appointments to make sure nothing was missed with her heart. And 15 weeks later, my amazing, healthy daughter was born. We had already accepted the diagnosis and enjoyed the newest addition to our family.

Everyone will have their reasons why they choose to have or not have prenatal testing. But if you are wondering “What is the point?” knowledge and preparation are two great reasons for it.

Bio:

Lissa, with the help of Bryan, writes the blog Raising Special Roses (raisingspecialroses.com) on their experience with raising a son who has ADHD and a daughter who has Down syndrome. She loves writing, renaissance festivals, and her family. She wants to change the stereotypes of special needs and show that it is not a scary place, just different.

She is also on instagram @raisingspecialroses and on Facebook at facebook.com/raisingspecialroses

October Down Syndrome Awareness Facts Day #9

October 9, 2018 by Dawn@cedarsstory.com Leave a Comment

Like most people I find that it is pretty easy to pick out of a crowd someone who has Down Syndrome. There are certain physical characteristics that make those who carry an extra chromosomal enhancement stand out. What I didn’t realize, however, is that the physical markers go further, and there are some anatomical differences that sometimes go hand in hand with medical issues.

Those who have Down Syndrome often have significantly smaller ear canals and eustachian tubes. This can lead to a higher incidence of ear infections and fluid retention in the eustachian tubes sometimes requiring the surgical insertion of tubes.

Those who have Down Syndrome often have a less dense bronchial structure in their lungs which, coupled with lower muscle tone, leads to an increased risk of respiratory infections. When little ones with Down Syndrome contract a respiratory infection there are simply not enough of the dense bronchial structures and alveoli to combat the distress as there are in their typical peers.

Some individuals who have Down Syndrome have issues with sleep apnea due to smaller upper airways, larger tonsils and adenoids as well as lower muscle tone.

As medical care for our loved ones with Down Syndrome has improved, we have learned these facts and have also worked on solutions and ways to treat individuals with Down Syndrome in a more proactive manner.

The American Academy of Pediatrics has a great list of info here that you can print and take to your own pediatrician.

Why We Didn’t Test for Down Syndrome

October 6, 2018 by Dawn@cedarsstory.com Leave a Comment

Why We Didn’t Test for Down Syndrome

We were shocked when our son, Cedar, was born with Down Syndrome. It was an overwhelming and all-consuming shock if I am totally honest. One that makes me look back on those first few pictures we have and still get choked up sometimes. My eyes were glassy and red-rimmed in those pictures when I should have been smiling and joyful. I still stick by why we didn’t test for Down Syndrome.

I wouldn’t change the way we learned of the diagnosis of Down Syndrome.

I vaguely remember in my early twenties being offered lots of tests when I became pregnant the first time and asking what they were for. I was told that I would be able to have screens for all kinds of genetic issues but being young and healthy I didn’t see a reason for the tests and they did let me know that there were false positive rates.

That right there was what always led me to decline the tests, because I know me.

I cannot handle the worry involved in fearing there is something wrong in a pregnancy. My husband and I have actually conceived 10 children but lost 4 pregnancies. Just the worry going into a pregnancy when HCG levels are not what they are supposed to be or there is spotting or cramping or any other part of a pregnancy that is “not normal” terrifies me. That and I just really want to enjoy being pregnant without the worry that comes with having a test performed and the anxiety of waiting for results.

The ironic thing is that I had the same OB/GYN for all of my pregnancies and she would dutifully offer the testing but follow up her words with…”I know you aren’t going to want it, but there are prenatal tests we offer.” She may have offered more than once with my last 3 pregnancies as I was over the magic “35” mark at that point, but nonetheless she never pushed.

My last few pregnancies were so wonderful as I had committed to being a full time mommy and left my 15 year career as a social worker. I no longer had the added stressors of work life and family life combined and I could fully focus on being mom. My pregnancy with Cedar was no different other than I was much more tired throughout the pregnancy, I attributed that to just being older going into this pregnancy. We made the switch to homebirths and using a midwife and doula after our 4^th child was born so even though I continued to see my OB/GYN through our 20 week ultrasound, I planned a more natural approach to our birth.

I did have ultrasounds, I did have prenatal care, and yes, I took my vitamins. I did decline the blood tests that would have likely picked up on Cedar’s little extra chromosomal surprise and I am so glad that I did.

Had I had those tests I know I would have been a mess for the entire pregnancy.

I had a taste of that when our 20 week ultrasound made a tech think Cedar had clubbed hands and feet (he does not). We were referred to a Level 2 ultrasound/anatomy scan where we were told that all looked good and there was no cause for concern, there were not clubbed hands and feet or any other anomalies visibly present. However, that 7 day wait between one ultrasound and the next and the emotional rollercoaster I was on worrying about everything that could go wrong was more than I ever care to experience again. When the high risk OB offered blood tests and/or an amnio due to my age I declined rather vehemently and never looked back.

I am so thankful that God allowed Cedar’s surprise to be hidden until he was safely here in my arms because I know me, and God knows me, it would have been bad.

I declined the testing not so much just because it wouldn’t have changed anything (and it wouldn’t have changed the outcome- we never would have chosen to do anything but give birth to Cedar) but because for me, I didn’t want the added stressors of waiting for results, worrying about false positives/negatives, and so many more fears that it seems when you crack the door open, they flood in the room. Like I said, I know me and I didn’t want to do that to myself.

I know many people say they want to have testing done so that they can prepare but I don’t know if you can ever truly prepare to become a special needs parent. It isn’t a path that any of us anticipate and initially navigating this new path can be kind of hard, however, I was glad that Cedar was my instructor from day 1 and not his diagnosis before I laid eyes on him.

I fully educated myself on Down Syndrome once Cedar was here in my arms and once I no longer had to fret about everything that could go wrong prenatally, he was here, he needed his mama and I was going to do this as best as I could.

We all chose to test or not to test based on our own reasons, I am so glad for the choice I made not to test.

Remembering before Rubber Duckie

October 5, 2018 by Dawn@cedarsstory.com Leave a Comment

Cedar was in the tub tonight just splashing around and exploring the bubbles and his latest buddy, Rubber Duckie and it made me stop and think. It wasn’t that long ago that I remember thinking…will he ever be able to sit in the tub? Will he ever be able to play and have fun splish-splashing with his brothers in the tub? Like so many things with Down Syndrome, sometimes parents are left wondering if it will ever happen, whatever “it” may be. Whether it be sitting, crawling, cruising, walking, talking, reading, the list goes on and on.

Yes, they will be able to but when you are waiting for it, it seems like it will never happen.

But then one day, you look back and realize that what you have been waiting on for so long is now so common that you almost take it for granted.

Like Cedar in the tub.

I actually said to my husband the other day, it is kind of nice really, once you give in to the fact that nothing with Down Syndrome can be rushed, that we can enjoy each stage a bit longer. With my typical kiddos it seems like every time we blinked another year had gone by and they were moving through life at warp speed. At least with Cedar we have time to enjoy each and every stage.

That means enjoying that he loves his rubber duckie and bathtime as well as the occasional bubbles.