Guest Post, Author at Cedars Story

Avoiding Caregiver Burnout As a Special Needs Parent

July 6, 2018 by Guest Post 6 Comments

Avoiding Caregiver Burnout as a Special Needs Parent

Life lately reminds me of a paragraph out of the @Sniequist book “Present over Perfect”. In this chapter, she describes life feeling like she’s driving a car with the windows rolled down and the music up as loud as it possibly can go. She slides into a gas station, swings open the door and runs inside, placing her face underneath a red Slurpee machine, guzzling it down as fast as she can. That’s what I’m feeling these days. I want to take in every ounce of this season of being a mom to two little ones. I want to say yes to all the therapy. I want to do all the fun activities with my children. The list could go on. I have a little voice that is increasingly growing louder and louder, saying this way of operating won’t be suitable and these years are fleeting. So how do you manage avoiding caregiver burnout as a special needs parent? How do you slow down the speeding car? I’m not going to pretend to have all the answers, but I can give you my perspective, based on what I need to do myself.

Number one

Accept what kind of person you are and operate within the strengths and weaknesses of your unique traits. I know I’m a people person. When I’m building out our week or month of obligations I need to take into account that I will resent our schedule if I don’t allow time for social interaction. No, oversharing your thoughts, feelings and most recent cookie recipe with your child’s physical therapist doesn’t count. No judgment, I’ve been that person. You’ve got to have normal playdates, social events and adult conversations that are not centered around being a caregiver for small children.

Number two

You’ve got time. I still fight the urge to book therapy for every day of the week. I want to over-provide for my daughter, just as I do my son. I put pressure on myself to “keep grinding” to get her to the next milestone. This comes from a place of love, but it’s not fair to her, me or our family. If circumstances allow, take on a therapy routine that feels slightly below what you envision. Our ideas of what we want to implement are usually a bit unrealistic when applied to everyday life. I’ve noticed most of Rory’s success comes from home implementation, but when I have us booked for daily practitioner-led therapy, the homework isn’t as much as a priority. The thing is, at the end of the day, you’ve got to still have the focus and energy to just be mom. If your running from appointment to appointment all day you will eventually hit a big hard wall. That wall hurts when I step back, a bit dazed and realize I didn’t get to be mommy all day. I was a taxi driver, therapy director and meal planner leaving no time for snuggles, story or just relaxing with my family.

Number three

Don’t quit, just rest. A new rule I’m looking forward to implementing is scheduling formal breaks in our therapy routine. I may align her therapy with the academic schedule or create one that works for our family. There needs to be light at the end of the tunnel and sometimes pressing on until the milestone happens can be a long haul. Knowing that you have time off from the flow of early mornings and practitioners coming into your home is helpful when keeping morale up. Make sure to utilize those breaks for true rest. That can be doing nothing or taking a small family adventure. Whatever works best for you.

Number four

Make sure you’re taking care of yourself. Shower, eat right and have alone time. This goes back to number one. Know who you are and what you need to be the best you. Don’t feel selfish. If you are not well, your little one won’t do well. Don’t get sucked into social media during nap time and not shower. That shower is important to your overall well being. Don’t sit on the couch and crash, skipping lunch. Make yourself a priority!

Number five

Celebrate! Celebrate! Celebrate! If you’ve made it through six weeks of therapy and its time for your scheduled intermission, do something special. If your little one hit a small or large milestone make it a big deal. We work hard for our children and they are busting their butts to accomplish these goals, it needs to be recognized. You all deserve it.

Download this reminder and tape it to your fridge!

Amanda is a Mom of two (Owen + Rory). Shop owner @theglorydaysco, writer, and special needs advocate. You can also find her on Instagram @roryblakeisgreat

Cooper’s Story- Down Syndrome diagnosis at birth

July 2, 2018 by Guest Post 10 Comments

“Daddy, come look at your son”. Mike peeked his head over the curtain to see them holding up our son.

I looked up at him and saw his face scrunch up, the tears came, and he said “Babe he is beautiful, he is perfect, you did so good”

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Paige’s Story A Diagnosis of Down Syndrome (7 months later)

June 29, 2018 by Guest Post 2 Comments

It sounds unusual, but as I have delved into this community, I have learned that it is not completely unheard of for a mom to receive a Down Syndrome diagnosis months after birth, and sometimes even longer as some developmental delays start to show up. Some children just don’t have significant physical markers that are obvious at birth, I believe Paige was one of those sweet babies.

My story is very unusual but, it was also 25 years ago, things were a bit different then.

I live in a very small rural town and delivered my daughter in a town 70 miles away just to get adequate care.

I had married for the second time and had two children, a boy and a girl, from a previous marriage, but my dream was to give my new husband a child of his own. I had undergone 4 hours of micro-surgery in the city to reverse my tubal ligation that had been done 10 years prior when I had my first daughter. I was told that there wasn’t much to work with, but the surgery had gone well.

We tried for about 6 months, but we had been told that after that time period, chances are slim due to the growth of scar tissue. My OB did a hysterosalpingogram which is where dye is injected into the tubes to see if they are clear. The doctor and I both had a big cry as it appeared both of my tubes were blocked.

I went home and just went on about life, but about 6 weeks later I realized my period was late.

I had one of those pregnancy tests left over from the multiple I had bought and when I took it, I was pregnant!!! We were thrilled.

A few weeks went by and I began to spot, I had never done that with my previous pregnancies. So back to the doctor I went, and I was given a pamphlet on miscarriage. Nothing happened and I continued with a pleasant and uneventful pregnancy.

My doctor did want me to have Triple screening down, which I did, and it came back negative, I worked as a hair stylist up until the day I delivered my daughter. Sadly, I let the nurses talk me into an epidural which stopped my contractions. I had to be given Pitocin which was definitely no fun. The baby was getting stressed but I managed to deliver her just fine. I really can’t recall anything eventful happening after her birth.

The pediatrician that cared for her never mentioned anything, never hinted at a problem.

The only thing I noticed was she was smaller than my other two, and she had little shell-shaped ears. The only thing that was at all disappointing was that she ended up with a terrible scratch which I believed came from the ID badge the nurse wore. She handed me Paige, but then she buzzed out of the room when I asked about the scratch which became red and inflamed. I asked the pediatrician about it and he just blew it off saying babies scratch themselves all the time. She still bears that scar today.

My new baby was very hard to nurse. She would latch, but just couldn’t stay on and would tire very easily. At her 2 week check up, that same pediatrician described her as “failure” to thrive but he gave no real explanation of what that meant. I then put my daughter on formula and she did great and began gaining.

The next obstacle we faced was that after her first Sunday in the church nursery she ended up at a nearby hospital, throwing up and feverish. (maybe a bug from the nursery worker I heard telling she had been sick the day before) UGH!

The doctor that cared for her in the hospital had also cared for my other two kids; he never mentioned a thing about her having Down Syndrome either. Things from there just rocked along smoothly.

Moving along Paige was six months old and had a teary eye, my mom was afraid that a tear duct might be plugged and thought I should take her in to see the doctor. I went ahead and I took her to the NP here in our little town. I told him what we were there for; he excused himself and left the room. He was gone for a long time and finally returned with a medical book that he plopped on the exam table.

I think your daughter has Down syndrome.

WHAT? Well, needless to say, I was stunned. He suggested we should see a pediatrician for testing.

The only comment that sticks in my mind from family or friends was my mother-in-law. After hearing the idea she might have Down syndrome, she commented, “I knew something was wrong with her, she never cries.” to which I informed her my other two were not bawl babies either!

We did go to the pediatrician, and she didn’t think Paige had Down Syndrome by just examining her. I was ready to GO. My husband, on the other hand, wanted testing. He said we needed to know and learn the truth.

I wanted to run after watching the “in training” tech stabs Paige repeatedly, trying to get a blood draw. They finally sent me out of the room.

Well, fast forward to 5 weeks later, we were informed she had an extra chromosome.

Everyone tried to convince me she didn’t have Down Syndrome, but I think deep down I knew.

The call came a week later that indeed my dolly girl had Down Syndrome.

You know, she still was the sweet little girl before I got that call. There was absolutely nothing that had changed, not a darn thing was different, except for that label.

I just praise GOD daily that in those 7 and 1/2 months of not knowing, Paige didn’t have any health issues, such as her heart that could have taken her from us.

So YES she was 7 ½ months old before we knew for sure. After the call, we went to see the geneticist in the City. He had her chromosomes all out on his desk on what looked like x-ray films and tried his best to explain how Down Syndrome came about.

Needless to say, we went out totally confused. Everything I read about Down Syndrome was so dark, sad, and negative. The data was so outdated and suggested people should institutionalize their children.

Oh Lord, I couldn’t find any help, not a soul to talk to. I did know a little girl with Down Syndrome from when I was in high school, I had worked at a day care in the neighboring town, but I had never talked to her mom, mainly because I didn’t know her and that little girl was much older than my Paige.

I regretted having not having pulled that little girl onto my lap and loved on, played with, and cared for her more.

I remembered being somewhat fearful of her, to be honest. She was non-verbal, and a runner. I think the negative responses of the people who worked there didn’t help. In later years, I told her mother I was so sorry for not having loved her like I should have, I hope she knew I was sincere.

ECI came to our home every other week for one hour. Basically they just played with Paige. That’s the only thing that she had before going to school at three years old.

Sadly, the lady that taught pre-school, had no experience with children that have any kind of disabilities, but the saving grace was her aide, Carmen. Carmen was a lovely lady that really watched out for my little girl. I don’t want to be negative, you have to bear in mind, I live in a town of 1,000 people, but no one had much experience with anything except “typical” children.

I had plenty of “butting of the heads” with teachers over issues that arose. Sadly my husband, who I love dearly, is not a confrontational person. He was taught, teachers are always right, so we did have some rough times over her education from day one.

Paige was included in the classroom until Jr. High, but then we let her decide, which might seem strange, but her being happy was our first prerogative. Paige told us she wanted to be in (her) room, which was the Resource, so that’s how we rolled.

In hind sight, now, I think she missed out on things that her classmates did so it wasn’t like she really was a part of her graduating class. I think it all depends on your child; we are all so very unique. The good thing is that Paige reads well, she writes messy, but she writes!

Sadly, math eluded her which was something we wished she could have conquered. We are involved with Special Olympics in the town where she was born, that is 70 miles away. Paige also participates in equine therapy in a town 65 miles away, but you have to be pro active in order for your child to be included in things that stimulate their minds and bodies. So we drive!!!

Paige has 4 nephews, 1 niece, many cousins, aunts, uncles, and family and friends that adore her…She was meant to be, and I’m so thankful for the gift she is to all of us!!!

Katie, Paige’s mom, is happily married to her husband and also the mother to 2 children who do not have DS. Katie has 4 grandchildren that light up her life as well as Paige. Things have changed over the years with Down Syndrome, but the light that these children bring to your life will never change.

Limits for a Special Needs Child with Down Syndrome

June 27, 2018 by Guest Post 2 Comments

What are the limits for a special needs child with Down Syndrome?

Society would have us to believe so many limits are in place. Limits on what they will be able to accomplish, limits on their physical development, limits on their educational opportunities, limits on their personal relationships, but what does a mom say about the limits for a special needs child with Down Syndrome? Trista shares some insight.

Limitless

You can imagine all the interesting comments I have gotten over the past couple of years regarding my daughter having Down syndrome. Comments bred out of ignorance, assumptions and generalizations. Even things that came up in my own thinking before having my daughter with special needs. I do know that it’s time to start breaking through those comments to show the world how important people with different abilities are.

It was a complete surprise to me the day I first heard the doctor suspect my unborn baby had Down syndrome. I thought maybe I misheard what he had just said or perhaps he himself was confused. The twenty-week ultrasound showed she had a severe heart defect that would require surgical repair soon after her birth. As if that wasn’t enough to take in and process, the idea of being a mom to a daughter with special needs sent me for a loop.

I sat there laying on the bed in complete shock as he continued on saying I could choose to go through further testing to confirm his suspicions.

I was only 31 at the time, with two other typically-developing healthy girls. This far into motherhood it never even occurred to me to anticipate something other than what I already had.

A couple of weeks later, it was confirmed through a non-invasive blood test that the baby I was carrying in my womb did in fact have Down syndrome. The Genetic Counselor offered reading material over the phone when she called to deliver the news. Her voice sounded distant and full of sadness as she said explained the test results to me.

I sat on the couch after that phone call as my mind began racing, my heart pounding as I tried to wrap my mind around what this would mean for me. It felt like completely new territory to me, having very little experience with people with Down syndrome. What was my life going to look like moving forward? I sat and worried about the future.

I turned to social media as I explored personal accounts of how deeply touched people have been knowing individuals with Down syndrome. The majority of articles I came across seemed so positive and I wondered why I had had a different idea in my own mind I had made up regarding people with Down syndrome.

I thought back to those that I knew with Down syndrome growing up. I didn’t make it a point to get to know them or their families. I let the opportunity slip right through my fingers. And if it weren’t for the baby in my own womb, I wondered if I would have gone my entire life missing out on an entire group of the most beautiful people I have ever come in contact with.

Her first few months were wild and chaotic as heart surgeries and hospital stays dominated our lives. She fought hard through it all right from the beginning. I sat with her day in and day out in the hospital, holding her tiny body close to mine praying God would heal her. That the heart surgeries she was enduring would make her heart strong and whole. She made it through and eventually it was time to take her home.

Ellianna’s Story- Down Syndrome Diagnosis at Birth

June 25, 2018 by Guest Post 3 Comments

Down Syndrome Diagnosis at Birth

Most of the world believes that all moms would know ahead of time that their child may have a genetic makeup that is not the same as everyone else, but you may be surprised to know that is not the case at all. There is a very high percentage of moms who have their world completely rocked when they recieve a Down Syndrome Diagnosis at birth. Eloise is just such a mom and she and I have been following each other since shortly after Ellianna was born. Here is her story of a Down Syndrome Diagnosis at birth.

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