Real life Down Syndrome Awareness
For some reason, the misinformation is still prevelant that Down Syndrome only occurs in older mothers. After running this site for awhile, I am here to tell you that the vast majority of mothers who have a diagnosis presented to them are falling into the “young mom down syndrome diagnosis” category. Katie was one of those moms, never expecting a Down syndrome diagnosis this young mom has now embraced it and her beautiful son, Sutton.
I was 43. I had three kids from my first marriage and my second husband and I had one darling, blond haired, blue eyed boy just a year old. We wanted just one more and not so secretly hoped for a little sister for our son. One just as “perfect,” one that would bring us all the pride and joy we could imagine. I pined for little tights, flowered dresses and bows.
It didn’t take long for us to get pregnant again – a tremendous blessing, the significance of which was not lost on us. We went to our first ultrasound appointment with every expectation that we would see our healthy baby growing. We also assumed that all would go much as it had the last pregnancy – smoothly and dodging all the “bullets” that we knew could potentially hit us considering my advanced maternal age. We had done it once, so had no reason to think we couldn’t do it one more time. And hopefully with lots of pink this time.
We received our first curve ball the first appointment. There wasn’t one healthy baby growing. There were two.
Twins.
There was our first “bullet” that went along with being a pregnant woman over 40 – a higher possibility of multiples. We were simultaneously elated and terrified! On the whole we were excited to have some exceptional news to share with our families and laughed in disbelief about the ride we would be embarking on in several months.
Our ultrasound at 11 weeks began to show some markers that we were familiar with, having recently been through an over 40 pregnancy. We tried not to let the measurements showing the abnormally thick nuchal folds get us too concerned. But again, we knew very well the “bullets” we were hoping to dodge.
Next we chose to proceed with a new screening test that would tell us with remarkable accuracy if Down syndrome was present. We waited for the results with high hopes that we would receive a negative result and this would all just be a fire drill.
Our doctor’s call proved otherwise.
Down syndrome was present.
The next several weeks and one heart wrenching experience with amniocentesis confirmed our worst fears. Not just one, but both babies had Down syndrome. Oh. And they were both boys. Naturally. At this point, at least that was one small thing we could almost laugh about.
Those next several days and weeks were a swirling blur of pain, loss, tears, and waiting to awaken from this bad dream.
I just could not understand how or why this was happening to me. It was surreal. I wanted a way out so badly. What I wanted most was to turn back the clock and prevent it all from happening in the first place. Forget the tights, hair bows and flowered dresses. I tried for that and got something else entirely that I never, ever wanted. I could not imagine anything worse.
We honestly didn’t see how we could provide care for two boys – TWO – with Down syndrome. By this time I was 44
and my husband was 45. The fear was not so much a baby or even child with Down syndrome. The fear was a teenager, then adult with Down syndrome. How could we possibly care for two young men who would almost certainly outlive us? How could we put that burden on their siblings? How much time and resources would it take to raise two boys with Down syndrome? How could we rob our son of the care he needs as he grows because we have two other boys with special needs? And what about my older kids? One in college and two in high school – how would we have the bandwidth to meet their needs as well in the midst of all this?
I knew families of children with Down syndrome or other disabilities loved their children. From arms length I could appreciate the inspiration of children with Down syndrome overcoming obstacles and accomplishing things most would never have believed they were capable of. But I did not want to be part of that club.
This all happened during a time when individuals with Down syndrome were just beginning to get more and more attention in the realms of social media, entertainment, and business. But it was salt in my wound to see a movie come out starring a young man with Down syndrome or read a story about a young woman with Down syndrome succeeding in her own business. Instead of providing me with hope and encouragement, these type of things just reminded me how I had never asked for this in my own life.
We contacted the NDSAN (National Down Syndrome Adoption Network) just to see what our options were. We wondered if there truly were families out there that we might feel comfortable allowing to raise our boys. Within hours we had profiles of several families – all of which seemed to be wonderful people who would be overjoyed to adopt our babies. Long before we felt ready to make a final decision, we found out that adoption was a very real option and began communicating with one particular family. As we got to know them we decided that if we went ahead with creating an adoption plan for the boys, this would be the family.
The pain and tug of war of the next several months was consuming. There was no escaping the feelings, the struggle, the fear, the pressure to make a decision. The joy of pregnancy – double joy of expecting twins – was all stolen because of the diagnosis we had received. We cancelled our plans for a big gender reveal party. No pink or blue cake and balloons. No plans for a baby shower. No frantic search for duplicates of all the baby items we would need. All of that was snatched from us. All the conversations I would have enjoyed having, I dreaded and tried hard to avoid. “When is your baby due?” “Are you having a boy or a girl?” “Oh my gosh, twins?! You are certainly going to have your hands full!” Normally this is an expectant mother’s favorite line of questioning and topic of discussion. To me it was a reminder of the pain and loss I was experiencing. Loss of the children I had imagined when we first discovered we were having twins. Loss of the future I had expected for them and for us. We had been thrust into a world of which we knew so little and that we had never had any desire to be part of.
As the due date approached, we felt more and more pressure to make our final decision. We did not want to leave the potential adoptive family hanging on unnecessarily. They had already been tremendously gracious to us, giving us time and space to consider and process all our feelings. They faithfully prayed for us and encouraged us and our friendship deepened even under such unusual circumstances.
We really believed ours was not a black and white decision. Adoption is a wonderful gift for everyone involved. For the child, it demonstrates that he is loved enough for his birth parents to seek out what is best for him even though it may mean such pain for the parents. For the birth family it can provide peace knowing their child is being placed into the arms of a family who loves him as much as they do. For the adoptive family it is the fulfillment of a dream to parent a child they may not otherwise be able to have. Therefore the decision was even more difficult because the answer was not cut and dry. We wrestled and prayed and discussed until we had no strength left.
The turning point for me was when I realized I needed to let go of fear. It was fear that was ruling my thoughts and trying to rule my decisions. I realized that I had been refusing to accept the gift I had been given of not just one, but two children who had been created to be exactly who they were supposed to be. We would likely face challenges we had not anticipated, but so often we experience great beauty in the midst of things that are difficult. We grow. We realize it isn’t all about us. We still didn’t know what life would look like raising the boys, but when do we ever know exactly how the map of our life is laid out? I also knew we would not walk our journey alone. Our faith promises us that we have a God that will never leave us or forsake us and our community shows us that we have friends new and old that will walk alongside us. I finally chose to take my eyes off the wind and waves and lock them firmly on Jesus.
And so we stepped into the unknown. We called our friends to say the baby shower was a go! We frantically gathered up cribs, double strollers, matching boys’ clothes, car seats and diapers, diapers, diapers. The boys were born at 37 ½ weeks and I was instantly and forever in love with Charlie and Milo. I could not be more proud of who they are and I know they are here for a purpose. So far they have helped debunk myths about what Down syndrome is like, encouraged others to support adoption of children with Down syndrome, connected other families of children with Down syndrome with our local support system, and brought countless smiles to the faces of everyone they met. I can’t wait to see how else they will change the world!
I wish I could go back to pregnant me and share with her all that I’ve learned now. I wish I could take away all those wasted months where I struggled with pain and fear. However, I know I had to go through that valley. I had to experience that pain, grief and loss because it’s just normal. Life doesn’t always go the way we plan and when we receive a diagnosis we never expected, it rocks our world! I’m so thankful that NDSAN was there for us and our potential adoptive family as well. They gave us the permission to experience all the ugly feelings and to work through them.
At the end of it all we chose to keep our boys and welcome them for the gift that they are to our family. Not once have I thought we may have made the wrong choice. The moment we made our decision I knew it was the right one 
for us. Not that we haven’t had moments of sadness over the challenges we have – we do even now and I’m sure still will have those moments as the boys grow. However, my boys never do! They have no regrets about who they are! They are determined, energetic, goofy, incredibly smart, sweet little monsters! In so many ways they are much like any other two year olds – in good ways and not so good ways. They are a constant-motion combination of sweetness, silliness, busyness and naughtiness!
When I notice their delays and differences now they impact me less and less. Instead, every day I’m amazed by how smart and determined they are! Milo learns new signs at the speed of lightning and tries to say so many words. Often we don’t know for sure what it is he’s trying to say, but whatever it is, he means it! Charlie is so strong and is all about being a big boy. He mimics everything his big brother does – throwing and running with a football, diving off the couch, dancing around the living room. They understand everything we are saying – even though they often choose to ignore our instructions! They have super kissable cheeks. Their smiles light up the room and their laughs are the best sound imaginable. Every day they remind me that they are not to be underestimated! And when they hit a milestone that we have been working to achieve for a long time, you have never seen a more proud Mommy! Ever.
Julie McConnel is mom to 6 kids from the age of 23 on down to her two year old twins sporting an extra 21st chromosome. She is passionate about advocacy for her boys and others with Down syndrome and also musical theater, ethnic food, the 80s, Jesus and someday owning a convertible. An Idaho girl, sometimes-runner, chronic insomniac and notorious over-extender, you will rarely find Julie sitting down, but the music is always on and living room dance parties are frequent. Her husband and favorite, Dan, keeps her grounded while also giving her the courage to learn and experience new (and sometimes scary) things! You can follow along on the adventures of Charlie and Milo on Instagram @chucklesandmeatloaf
I had a mother reach out to me and suggest that a topic I might want to explore on the site was the topic of Infantile Spasms and Down Syndrome.
I am in a number of facebook groups for parents of children with Down Syndrome and this was not a term unfamiliar to me, however, the extensive research that would be done by a mom in this situation was not something I was yet familiar with. That’s when I did what I do best…I asked a mom to tell her story.
I always get so excited to find another family who shares my affinity for homeschooling, especially when it involves choosing to homeschool a special needs child. I “met” Joy and her family because of our very similar journies but she is far ahead of my special needs homeschool journey so I value her thoughts and observations. When she recently posted this article on her own blog I asked for permission to share with my readers as it was such a blessing to me, I figured it would be to all of you as well. Here are some of Joy’s sage nuggets of wisdom…
When Rudy, who has Down syndrome, was born we were already well into our home schooling journey. Our oldest was 9, so we were into our fifth year, yet for some reason that surprised me, many people thought we’d send Rudy “out” for special services and special preschool . . . and eventually public school. Why? Partly, they explained, because even though they thought we were doing great with our “typical” children, surely Rudy would need the benefit of “experts”, surely I knew that his needs were far beyond my expertise and I would want him to have every advantage! Hmmm. . . This seems to be a widespread idea, so I will address it, as well as adding my own thoughts so that you can make your own decision. And if you know someone who has a special needs child, you can gain understanding and find a way to be supportive!
First of all, I think most people have an idea that the only way to get early intervention therapies is through an early education program specializing in “special education”. That is not true. All 50 States have some sort of early intervention therapy program for developmental delays that is available to these children for free. In Missouri, we have First Steps, they coordinate services like Physical therapy, Occupational therapy, and Speech therapy that come right to your house. We started with these therapies when Rudy was just 3 months old! Every child is assessed and specialized therapy is given, based on his particular needs. This program is from birth to 3, after this there are other avenues to get the therapies needed, if needed. Rudy’s therapists did not see a need for continued therapy after he turned three, but that is an individual thing, as all children with Down Syndrome do not develop at the same rate.
One day, after an hour of intense physical therapy, working on Rudy’s core and balance, in an effort to work toward him being able to sit up, the noise level in our house began to steadily grow with laughter, shrieks, and excitement. And thudding of feet. As I went to inspect, I saw Rudy on a large blanket being pulled around the “circle”, which was just the path that the doorways from kitchen to dining room to living room made. They had made the blanket into a little sled for him, the corners that they were pulling him by made a sort of a back support, but as they pulled and turned it allowed for him to use his core, sort of like holding a mini “crunch” on a roller coaster! He was giggling, belly laughing, and squealing with delight! The older kids were having a blast and Rudy was practicing much needed muscles and balance that would lead him to sitting up! So, what did I take away from all of this? Rudy, at home, with siblings to play with, was naturally working on the same things that he was getting from the “experts”! That was a huge realization for me, and after that I could relax a lot more. And while I am an advocate for early intervention therapies, I now realize that kids with special needs gain much more from a home setting, with siblings of varying ages to play with than they could ever get from a specialized program, spending the day with other students their age, “typical” or special needs. This is a very freeing idea for a Mom living under the pressure of giving her special needs child every advantage they can in order to smooth the way for them in their life ahead!
Not too many years ago, children who were born with Down Syndrome were taken away from their families at birth and institutionalized. Now, as almost all babies with Down Syndrome go home with their families and are cared for and nurtured by those that love them, the average IQ for people with Down Syndrome has risen. Significantly. Why? The home is the best place for children. All children. Why then is is strange, that if a family is led to the homeschooling movement, they shouldn’t hesitate at all to keep their special needs child at home also? Or, even if this is their only child at home? I would not say that home schooling is the only way for families with special needs kids, or even kiddos with Down syndrome. Every family is different, with different goals, desires, gifts and callings. However, if the family feels drawn to homeschooling, there is no reason having a child with special needs, like Down syndrome, should keep them from it.
You are not qualified
I do not have a degree in Special education! How do I teach my son with special needs? Some of the same reasoning can be applied to this criticism as applies to all of your children, if you do not have a teaching degree. You love this child with all your heart, and that is all the “expertise” you will need! You want the best for him/her more so, than any professional ever could and that will more than make up for lack of training! You can gain knowledge: from the internet, from friends with experience, from books, and on and on. We parents tend to be quite motivated to learn when it comes to our little ones! The biggest advantage a special needs program has is it’s one on one teacher/student ratio. YOU have that. Little secret, the one on one attention is most likely to be given by an aid- with no degree at all!! only under the supervision of a teacher. You, on the other hand, can eek out as much one on one time for your child as you need to! You know your child better than anyone else. You are more motivated to provide the best learning environment and experience for your child that you can, more so than anyone else. And you are more motivated to provide every opportunity for your child to succeed than anyone else. Period.
You may not be an expert in Special Education, but you are an expert when it comes to your child. You know what motivates him/her, you know their likes, dislikes, and you know when they are at their limit. You know them like no one else, and this will help you teach them like no one else. On top of all of this, you have the advantage of the “teachable moment”. Unlike a formal school setting, you can see an opportunity for a concept to sink in with your child any time of the day or night! You are almost constantly present and available to “teach”, or what I like to call – facilitate learning. When they are interested, or a moment presents itself that makes a learning moment more possible than in “school time”, you don’t have to wait until it’s class time. This is HUGE for special needs kids, especially in areas that book learning is hard for them. And some concepts are almost impossible for them to learn without hands on experience.
I like what the folks at HSLDA say ” Our finding is, that with the literature, teaching aids, and other resources now available, that any parent who desires to help their child learn can find that help, and eventually do a much better job with that child than any school could do.”
Legal Considerations
Now, here is a really scary factor for all parents. No one is more scrutinized for home schooling than parents of special needs children. But, like any fear, with reason beside you, And taking the proper precautions, there is no need to let it hold you back from the best you can give your child. Home schooling has become ALMOST mainstream. When we first started homeschooling in 1998 most people knew what it was, but we still got a lot of blank stares and looks like we were really strange from people when they found out we home schooled. Today, the response is usually something like, “that’s great, I think that’s so neat” or “I know so-and-so who home schools their kids and those kids are wonderful”, or “I admire you, I wish I had the patience to do that!” or the most awkward, ” my kid wants me to home school them, but I >>>(some reason)”! With this widespread acceptance, we can worry a little less. Still, people do view special needs a little differently. In any case, I would recommend knowing, and abiding by your state’s laws. Home schooling is legal in all 50 states, and that includes your special needs child. HSLDA Home School Legal Defense Association has a breakdown of the laws for all 50 states. They also have a ton of resources for parents teaching special needs children here.
Time, and other considerations
I will not lie, teaching your special needs child will take time. It will take patience, lots of it. Not that you will spend hours and hours drilling facts into their little heads. On the contrary, most people find that short lessons are the most effective. However, consistency is key. I find Rudy responds well to short lessons, consistently. As do most kids, but it’s extremely important in his case. A learning lifestyle is important for him. Which takes care, planning, and insight into what makes him tick. Most of my actual time for his education is in planning, and digging up resources that will help him.
Patience. There are times you will want to pull your hair out. Just being honest here. Consider yourself forewarned. But that moment. That moment when they “get it” When you see that idea spread across their face, and dawn in their little mind! There is nothing better. Your heart will sing, joy will bubble up and overflow. That is a satisfaction worth everything. To be there in that moment is priceless.
Socialization
We have all seen it, the “special” kid who is taken advantage of because he will do anything to make people laugh! He is taught rude phrases, bad words, and even talked into doing wrong things to be included. Rudy, I know, is highly motivated by people’s laughter. If someone laughs at anything he says, or does, that action or phrase will by repeated again and again! Several years ago he scared me when I was coming out of the bathroom. He got a Huge reaction! To this day, he “scares” anyone he wants to connect with! There are certain people at Church that he loves. He “scares” them every week!
Yes, I will shelter him and protect him from people who would teach him that wrong things are funny. With no hesitation. “But he will have to go into the world sometime” “you can’t shelter him forever!” Maybe. But I will put off that time as long as I can. As he grows, and is exposed to good behavior and good ideas, he will grow. And when he is exposed to less than desirable behavior, That wisdom will be instilled into him. Who says “protecting” our kids is bad, anyway. No one would look down on me for “protecting” my child from burning herself on a hot stove, or harming herself on a steep cliff, if they didn’t have the wisdom to know they would be hurt – no matter their age. So, why is it different for social or moral situations?
To Home school, or not
is a family decision that depends on that family, their goals, their lifestyle, their commitment, and their values. It really does not depend on their child’s special needs. Is home schooling my children with Down syndrome different than home schooling my “typical” children. Sure. But, so is raising them. If I won’t defer raising them to “experts”, why would I need to defer educating them to “experts”!
Joy lives in Southwest Missouri, where she home schools her children. She has 6, 3 of whom have already graduated and are let loose on the wide, wide, world! Of the three who are still at home, two have Down Syndrome, which makes for extra challenges and adventures. As they learn along with the kids, the family also grows as much of their own food as possible while seeking to grab every bit of the joy God has intended for their family. Joy writes about all of her home schooling, homesteading, and family raising passion on her blog Beanpost Farmstead.
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