Special Needs Parents; I felt sorry for them before my son was born

September 24, 2019 by Dawn@cedarsstory.com 6 Comments

Before My Son Was Born, I Felt Sorry for Special Needs Parents

I used to be that mom. The mom who pitied those special needs parents.

I would be in the grocery store and I would see the child with special needs yelling out or rocking themselves, I would smile politely and then turn away feeling bad for that mom.

I would be at a restaurant and see parents wheeling their disabled or special needs child to the table and think, I am so lucky to have “normal” children.

I felt sorry for the moms who had a child with special needs.

Yes, I admit it, I pitied them.

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

September 14, 2019 by Dawn@cedarsstory.com Leave a Comment

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.

Cedar Saturday

August 24, 2019 by Dawn@cedarsstory.com Leave a Comment

When I looked back over our last few Cedar Saturday posts I realized that it has been almost 6 months since I have done one of these, how in the world does time fly by that fast???

I’ll tell you how, 6 children, homeschooling, a husband who just finished up his bachelor’s degree and life, surgery for both Cedar (ear tubes) and his brother (tonsillectomy) it happens. Summer has flown by and a Cedar Saturday is well overdue.

Rather than cover the last week (since it has been 6 months of weeks) I will just share what has been going on with Cedar and then try my best to start these Saturday posts up again.

Cedar has continued to progress in physical therapy and with the patience and love of his therapists he finally began using his gait trainer (walker) more and more. Here is a good example of how he was doing…

But then…I was off teaching a class for the day to social workers (all about Down Syndrome) and dad happened to be the one that took Cedar to therapy. Do you know what he caught on video? Here are the links to see on Facebook:

and on Instagram

It was a moment that brought this mama to tears. He is still only taking a 4-6 step transition and prefers his bum scoot but it is progress and we are so excited about it!

Cedar also underwent ear tube surgery and did great. I asked for lots of prayer because no mama wants to have their child have to be sedated but Cedar did fine. Here he is just moments before being taken to the operating room and since the surgery he has shown improvement in his language development, we believe he is able to hear better without the additional fluid that his ears were holding before the tubes.

moments before ear tube surgery

We also had another litter of Golden Retriever puppies. It is interesting as we first bred our beloved family pet because she had the best temperament ever and was so patient with Cedar (she is the same age and her birthday is within 1 week of his) Just look at how tolerant she is of him (and incidentally she is his best friend).

Is there anything cuter than a puppy?

Because of this temperment, we have had 2 of our online friends who have children with Down Syndrome come from PA and TX respectively to get puppies from our mama dog. What started as a fun litter of puppies has turned into a desire to have the ability to have another litter or two and share these awesome furry friends with the world.

We spent a week at our county fair where Cedar’s older siblings won awards for their livestock, showmanship, and knowledge of animal husbandry. We even had a few friends come to visit, including our friend Dash who came all the way from Texas with his family to visit and take home a sweet furry friend.

We also swam, camped, and phew…summer is almost over. With that I will wrap up the latest edition of Cedar Saturday and we will play catchup again next week. xoxo

Cedar & Familly

Harper’s Story- Thankful for a Birth Diagnosis of Down Syndrome

July 22, 2019 by Dawn@cedarsstory.com Leave a Comment

I have often said that I am glad that I did not know while I was pregnant that my Cedar was going to have Down Syndrome. I am glad I did not know because I know me and I would have worried incessantly and been miserable. Turns out I am not the only one that feels that way, that is the amazing thing about the internet, you can find so many other people and learn that you are not alone in how you feel. Meet Laurie, her daughter Harper has a magical extra chromosome just like Cedar and turns out, she feels the same way. All the way to her first thought, just like mine, I thought that being a special needs parent is something that happens to “other people” Here is Laurie’s story:

You never think it’s going to be you.

After three years of marriage my husband, Luke and I were excited to grow our family. We got pregnant fairly quickly and journeyed through an uneventful pregnancy with excited anticipation for our firstborn. We didn’t get any genetic testing because we wanted to keep our baby no matter what. This was pretty easy to say in the moment, but we didn’t know this statement would be put to the test.

I went into labor on my own and except for being a little early everything looked good. We headed to the hospital where I got checked in and continued to progress. What I thought was a routine check from the doctor turned into an emergency c-section minutes later. Harper was born and I got to see her for a minute before they whisked her away to the NICU. I didn’t get to hold her. I still feel the sting of missing this moment with her. After this whirlwind birth, I was left in my hospital room without my baby, in shock of what had just happened.

As I waited for the anesthesia to wear off, my nurses cared for me so well by bringing me pictures of Harper and assuring me she was in excellent hands. In the wee hours of the morning I was cleared to go see her and I was so excited. Weighing over 9lbs, Harper looked like a giant in the plastic NICU box and it was hard to see her attached to so many monitors with oxygen and a feeding tube.

Then the unknowns poured in. What was really going on? How long was she going to stay? We were so exhausted, we didn’t know what questions to ask.

Luke and I actually spent a lot of time apart during the hospital stay. He was taking back family one-by-one to see Harper and I was recovering in the room. We were both getting pieces of information from doctors and trying our best to remember and relay it back to each other.

I remember Luke telling me that the doctors asked him if we had any genetic testing done during the pregnancy and if anything had been off. He said no and they kind of beat around the bush to tell him that he thought Harper might have Down syndrome. The doctors were split in their opinions, so they went ahead and ordered the test.

Honestly, I was so exhausted that I had no energy to even really worry. I chose to not look up anything. Besides being able to spot the physical attributes of Down syndrome, I really knew nothing about it. I didn’t want anything to give me either false hope or certainty. I wanted to just wait for the results.

We were sitting in our room on the day we were to be discharged from the hospital and already knew at that point we would be leaving without Harper. There was a knock at the door and the NICU doctor, along with a nurse was with him. They shared that the results came in and Harper has Down syndrome. Tears started to flow immediately, Luke squeezed my hand.

They stated the diagnosis, asked if we had questions and if we wanted to be connected with local resources. They didn’t tell us all these scary things that we might face, which was a huge blessing when the diagnosis alone was life changing. The next few hours were spent sitting next to Luke in an oversized armchair, holding hands tightly as my doctor, other nurses and staff came to visit us to see how we were doing. They were so gracious in their responses. I know this is not everyone’s experience and I pray that when people get the diagnosis it is more like this. We were told people with Down syndrome live full lives and you just have to take it one day at a time.

The news was so heavy and I didn’t have the energy to process. I wanted to feel like a normal mom and pretend like this didn’t happen. I focused more of my energy on getting my baby home and caring for her. I felt like once we told people it was real. We knew we needed to tell our families and close friends, but I couldn’t formulate words. My husband took on these hard conversations and I’m so grateful.

After the doctors confirmed the diagnosis, she was screened for all the extra health issues that can accompany Down syndrome. Luckily, Harper was very healthy and it was a huge relief. Nine days after she was born, we got to bring her home and it felt so good.

Looking back over my experience, I’m grateful for a few things. For me, I’m glad I didn’t have a prenatal diagnosis. Since this was my first pregnancy, I got to enjoy it carefree with an innocence that I will never have again. I’m also thankful that our diagnosis was delivered with care and kindness. Our lives were undeniably changed with Harper’s diagnosis. Shock, disbelief and sadness entered in, but with each day we are experiencing more joy and hope as we get to know our little girl.

Laurie lives in Richmond, VA with her husband Luke and their daughter Harper. After an uneventful pregnancy, Harper’s arrival brought the unexpected – an emergency C-Section, a NICU stay, and a Down syndrome diagnosis. She blogs about her experiences with motherhood and Down syndrome at https://hiphipharperrae.com. Follow along on Instagram @hip.hip.harper.rae

5 Amazing tips for moms of Gtube babies

June 11, 2019 by Dawn@cedarsstory.com Leave a Comment

baby with a gtube button in. Title is 5 tips for moms of gtube babies.

There is nothing particularly easy about being a special needs mom, especially when you didn’t even know that was the path you were headed on. When that special needs diagnosis is compounded by life-threatening feeding issues, it is enough to make a sane mama, a bit frazzled. My friend Kimberly from KimberlyWyse.com shares some great tips for those who find themselves in just this spot. Her sage advice is perfect, 5 Amazing tips for moms of Gtube babies.

When my son, Redmond, was born a little over two years ago, we received a surprise diagnosis of Down syndrome, which also came with news of major medical challenges. We nearly lost him in that first few weeks of his life, and as Death breathed his rotten breath down our necks, we prayed with all our might that he would live.

Redmond defied all the odds and after 14 days on a ventilator, and a host of other medical interventions, he left the NICU after just 34 days. But during the time when he should have been following his instincts to eat, he was in a medically induced coma. He did not learn to suck, swallow, and breathe – so when the ventilator was removed, the NICU team inserted a nasogastric feeding tube (ng-tube) into his nose, and we set about the job of teaching him to eat.

That didn’t go so well. The ventilator had pushed up the roof of his mouth and he had a tongue tie that made it impossible for him to get the proper seal. He tried, but milk just dribbled out of the side of his mouth. Nursing him was impossible, which is still a heartache for me, so we switched to bottles. We turned ourselves inside out for months, first letting him take as much as he could from the bottle, then tube-feeding the rest. There were days when we didn’t do much except pump, sterilize the pump supplies, mix formula and defrost frozen breast milk into bottles with a 50/50 mix of each, warm the bottles, feed the baby, hold him upright for 20 minutes afterward to prevent reflux, and then do it all again 45 minutes later. We did that eight times a day.

We were determined to get that feeding tube out, but when he was eight months old, we finally agreed to a gastrostomy tube (g-tube). For a long time, we saw the g-tube as an admission of defeat, but it eventually became the best way to handle a challenge that wasn’t going to get better any time soon. The g-tube was the best decision because it made everything much easier.

Related Post: Natural Food Remedies for Constipation in Children

Redmond’s eating continues to mystify us, and at 2 years old he eats even less than he did a year ago. He’s struggled with other health issues that affect his eating, so we have learned patience. Weight gain has been a constant battle, just trying to keep him out of “failure to thrive.” We currently give him four high-calorie and high-fat bolus-feeds a day. Through it all, we’ve learned a few tips that I hope will be helpful.

The feeding tube is not your enemy. Proper nutrition is essential during the first two years of a child’s life when they grow exponentially more than any other time. Under-nourished children can have stunted physical and cognitive development. Babies’ brains need dietary fat and calories to develop to their full potential. Whether your baby is fed by breast, bottle, or feeding-tube, FED IS BEST. We wasted a lot of energy in those early months despising the feeding tube, rather than feeling thankful that we had a way to feed Redmond.

Accept the help you are offered – or ask for help! Especially during the early days of a tube-fed baby’s life, tube-feeding may be about the only thing a mother is able to do. But you need to take care of yourself and the rest of your family, so learn to ask for and accept help. Whenever possible, my husband took over the job of sterilizing the pump supplies, defrosting bottles, and feeding the baby. It was a huge learning curve for us both, and I had a hard time trusting him at first, but we figured it out together.

My mother-in-law and a couple babysitters learned how to feed him too. I wrote out step-by-step instructions so they had a reference tool. I would never have guessed it, but older teenage babysitters were awesome at tube-feeding. They were old enough to understand and follow directions and just young enough that they still thought they could do anything. You may feel like you’re the only one who can handle the complexity, but give those around you a chance to help. You might be pleasantly surprised.

Don’t be too hard on yourself. How many times have I forgotten to unclamp the tube or fed the crib? After two years of tube-feeding, I’d expect to have learned my lesson, but I still forget on a somewhat regular basis. Once I hooked up Redmond’s overnight feeding with the cap still on the feeding tube bag!

Very early on, I was so anxious about it all that I never missed a feeding. I wish I could go back and tell myself that it would be okay to skip (or postpone) a couple of those 3:00 a.m. feedings. Typical babies aren’t on such a regimented schedule. As long as your child doesn’t have any medical reason not to miss a meal, relax a little. If you accidentally feed the baby at an incorrect rate, have to postpone a feeding because your schedule gets messed up, or the tube gets pulled out, give yourself some grace. In the long run, it’s probably going to be okay.

Join an online support group. Let’s face it, you aren’t likely to pack up all your feeding supplies to go to an in-person support-group. In the two online groups I’ve found, I’ve learned about the best way to insert an ng-tube, how to best manage the stoma on a g-tube, what formulas to avoid, and ways to deal with people who don’t understand why your child needs a feeding tube. I’ve learned that lots of tube-fed babies have reflux and vomiting issues, and carrying a plastic storage container with a lid is the best way to keep the mess contained. I’ve learned even more than that just from interacting with the other parents and feeling the surge of joy when you see a photo of a child who’s graduated from feeding tubes altogether!

It took me a while to find the right groups, and when I did, at times I was overwhelmed by the photos and stories of problems other people encountered, so I offer this tip cautiously. As you get into a support group, remember that many of the photos and stories shared are examples of extreme situations. They are not the rule or those stories wouldn’t be shared. Typically, feeding tubes behave themselves, so I’d encourage you to scroll past those examples and look for the posts that are helpful to you.

Gratitude. As the parent of a medically-complex child, self-pity and depression can be constant companions if we let them. We have a choice though. The best remedy I’ve found is gratitude. When I see other healthy, easy babies, I can get pretty pathetic. (It isn’t fair. Why does everything have to be so hard? Will I have to tube-feed this child forever? Why won’t he or she just eat? Waaahhh…)

The best way I’ve found to combat that problem is to shift my perspective and express some gratitude. For example: I have a solid roof over my head, I have my health, I have a beautiful baby, and I get the privilege of cuddling him. I’m so thankful to have a way to provide nourishment for this child. He’s getting the best possible start to life by having consistent, nutritionally dense foods, and his immune system is well-supported. Gratitude will keep you going during the most difficult times. If you really can’t pull yourself out of a funk, try sitting in the lobby of a children’s hospital for an hour or two. As children with significantly more complex issues go by on their way to their appointments, your gratitude is likely to return. (It works for me.)

Lastly, if you can find a little humor in the situation, that helps too. When someone looks at you strangely and asks why your child isn’t eating, smile brightly and say, “Oh, we don’t feed this one.” Offer no explanation and go on your merry way. When your sister with a million kids tells you that she can get him eating, shrug and hand the baby and the bottle to her. After she’s tried to feed him for 90 minutes and only one ounce of milk is gone, she’ll never mention it again and you can giggle about it to your heart’s content – when you’re alone.

Our life isn’t something that others can easily understand. Until you’ve spent your entire life just trying to feed your baby, you simply don’t know. So, to all the fellow tubie moms out there – keep it up! You’re doing a great job! You are the hero on a battleground that few can see; your hard work isn’t likely to ever gain you great honors, but I see you. Carry on, lion-hearted mama. You are a warrior.

Kimberly is a mom, a farmer’s wife, a minister, and a writer. She is active in her faith and her role as help meet and mother. She spreads awareness for Down Syndrome and encourages others. Be sure to check out her Facebook, Instagram and her blog to find out more.