What Can I Expect From My Down’s syndrome Toddler: It’s a Spectrum
When Timothy was first born, I asked the doctor what he would be like, developmentally. He told me then, and I’ve heard it over and over again since that, “it’s a spectrum.” What he meant was that every child is so vastly different and unique in their capabilities. I personally found that raising a Down’s syndrome toddler was both, very different and also similar, to raising my other toddlers. He did a lot of the same things that normal toddlers do, just at a very different pace. When I learned to expect delays, and just let Timothy unfold before us without expectations, I did better. These kids have their own timeframe they operate in. The following are some specific areas in which his development was different.
Low Muscle Tone For My Down’s syndrome Toddler
The school district has a Birth to 3 years old Early Childhood Development program. They contacted me shortly after he arrived home from the NICU to set up home visits for Timothy. This was a free service covered for children with developmental disabilities. A Down’s syndrome toddler is known to struggle with low muscle tone and need extra help to develop properly as they grow. He got assigned three different therapists: physical, occupational and speech.
As speech was not yet needed, we only had one introductory meeting and would continue visits later.
The physical therapist came weekly and worked on building large muscle skills such as rolling over, sitting up, crawling, standing and walking.
The occupational therapist focused on small muscle skills such as eating and picking up small objects. When he was really little, he had a lot of trouble with the suck, breath, swallow. He would sometimes have difficulty swallowing things like bananas or peanut butter. A couple of times, food would come back out his nose. The therapist helped me to understand and navigate his particular difficulties. As he got older, she started working with him more on catching a ball rolled across the floor and orienting large puzzle pieces. Timothy has the extra challenge of having two thumbs on his right hand. He was clearly right handed, but needed to rely on his left hand more as his two thumbs couldn’t perform all of the needed functions.
Sensory Issues with a Down’s syndrome Toddler
As much as Timothy loved the cats, he hated when they would touch him. He’d shrink his legs back when they would rub against him. This cat in particular loved to snuggle with him. Eventually he came to stop minding it and today loves touching animals. I also introduced fuzzy animal books to him. It was the same there… he didn’t like it at first, but grew to love it.
I remember when we would first get a new batch of baby chicks in the mail. We would start the coop with a clean bed of wood shavings. When we were ready to unbox the chicks, we would sit Timothy down on the bedding and put chicks down in front of him. He loved it. By this time, he could finally sit independently (18 months old) and he’d just stare at them as they ran over his legs.
Other things that bother him would include: shirts with buttons, tags, collars (especially anything that rests over his scar from open heart surgery); also pants that are denim or have unusually large seams. His favorite clothing is plain t-shirts and sweatpants. Sometimes I can get him excited to dress up and wear something fancy. It really helps him to wear a button down shirt when I let him wear a t-shirt underneath and leave the top several buttons open.
Surgeries and Healing for My Down’s syndrome Toddler
By the time he was three years old, we couldn’t figure out why his growth was so extremely delayed. After checking with all of his other doctors, we ended up looking at his diet with a dietician. Now, Timothy had nursed until he was 2 years old and then finally figured out how to navigate table foods. By the time he was 3, he was eating everything in sight! For a week, I logged everything that he ate and concluded, like I had been insisting, that he ate as much food as an adult. Now, he was three years old, but was the size of an 18 month old… eating as much food as an adult. The dietician was stumped that he could consume that many calories and still not be growing. Thankfully, soon after he did start to grow faster.
A month or so later, I read an article stating that a major surgery before the age of one results in a whole year of stunted growth. Timothy had two major surgeries in his first year of life. This slowed down his physical growth tremendously. His body required a massive amount of calories in order to just heal from surgery.
Physical Delays for My Down’s syndrome Toddler
I found as he grew through the years, that he stayed consistently about half the size of his age mates. Meaning, when Timothy was 4 years old, he was physically similar to a 2 year old. Because he developed so slowly, it was harder for me to really pinpoint when he hit all of his milestones. It was all so gradual. Because of this, he became a “twin” with each of his younger siblings for a time. It was both sweet, as well as exhausting.
He learned how to walk with his little sister when he was around 3 or 3.5 years old. This was a Godsend as he previously was rolling everywhere he went. He was so fast! The downside was that he would get so dirty. I remember these two climbing up onto the table all of the time and throwing everything down onto the floor. They fed off of each other, laughing and sharing ideas. Think “partners in crime.” They also fought hard for my attention and tried to push the other one off my lap. I really felt like I had two babies constantly vying for my attention.
Hearing and Speech for a Down’s syndrome Toddler
Timothy has very narrow passageways, specifically his ear canals. They get clogged with wax easily and he has difficulty hearing well; especially when he has a cold. I wish that I had looked into hearing aids when he was in this toddler stage. I didn’t fully understand how his hearing fluctuations would impact his development.
His hearing impairment then led to speech delays. Because of this, our whole family uses ASL (sign language) with him. It was mostly just simple words like: eat, drink, play, help, animals, etc… like a toddler would use. As he grew, more words were added. Sometimes still, he would just cry and not use his signs to communicate. I usually tell people that he is non-verbal, but that isn’t exactly correct. He is very talkative, but so difficult to understand, so the signs help him tremendously to communicate with us. I highly recommend signing time as a tool for children to learn ASL. It is so engaging for kids and helps make learning fun.
Cognitive Delays for My Down’s syndrome Toddler
Timothy’s mental understanding was also very delayed, but at a different rate from his physical development. So although he was 6 years old, he was physically the size of a three year old; and yet not able to comprehend a simple question that you would expect from a typical three year old.
Being mostly non-verbal also made it very difficult to know exactly what his comprehension was. During his toddler years (which for him continued until he was about 8 years old), he never matured mentally beyond a 2 or 3 year old. At least as far as he communicated with us. He was definitely very observant, and understood more than he let on. Outside of his own siblings and parents, he didn’t interact with people very much during this stage of development. He preferred to spend most of his time with all of my “mom” friends, instead of playing with the other children. He would just stare at their faces as they held him and soak it all in. It wasn’t until he was closer to 8 or 9 years old that he began to play with other children outside of our family.
Obstructive Sleep Apnea for My Down’s syndrome Toddler
Sleeping was terrible. He slept in a crib in my bedroom until he was about 3.5 years old so that I could keep a close watch on him. I didn’t realize yet that he struggled with Obstructive Sleep Apnea. Frequently he would wake up throughout the night and I’d often find him sleeping bent in half on top of his legs. When I would talk to his doctors about this, they didn’t have much information to offer.
I happened upon a blog by a mom with a Down’s syndrome toddler and she began describing his problem with Obstructive Sleep Apnea. His (low muscle tone) tongue would fall to the back of his throat while he was sleeping, and block his airway. This looks like the chest moving like normal breathing, but no air is actually filling the lungs. After a few attempts to breathe, the child then gasps awake. This mom’s solution to this problem was to have her son’s adenoids and tonsils removed, thereby reducing the amount of tissue in the back of the throat.
I explained at Timothy’s ENT appointment soon afterward that I thought he had Obstructive Sleep Apnea, and his response was, “Oh yeah, that’s common, we do that all the time.” It was so frustrating to me, because he’d had this problem for years and the ENT never had an answer for me. It was a good lesson for me that, while doctors can be tremendously helpful, they don’t know everything and are not always right. After a miserable three week recovery, he finally began sleeping well through the night. It was a tremendous relief and probably also contributed to him growing faster now.
Potty Training My Down’s syndrome Toddler
Our first struggle was that Timothy was terrified of sitting on the toilet. Not nervous, terrified. I had a special seat to help him feel safe, but he still had a ton of anxiety and would refuse to sit. I tried snacks, books, and even screens. The screens finally helped get him to sit there and he would eventually pee on accident.
Next, after frequent checks on his diaper, I’d try to get him on there when I figured he had to poop. If indeed, he did have to poop he would get beside himself trying to get off the toilet so he could relieve himself into his diaper. It took years of consistency to get him through it, and it was always 100% my effort and 0% his. It was many years later that he began to take initiative for bringing himself to the toilet. Thankfully, his insurance covers the cost of his pull-ups. I just had to ask his primary care physician and he got us set up.
I know other moms of Down’s syndrome toddlers have been successful with training their children much faster than I was, but he was so terrified of sitting on the potty and also pooping. We tried potty seats down on the ground as well, but I think his fear was of his poo falling out of his body. At least, I’ve been told that this is a common fear for a Down’s syndrome toddler.
Timothy was never fully potty trained as a toddler. By the time he was 16 years old (physically about the size of a 10 year old), he finally took care of most of his bathroom needs and was getting close to even showering himself alone. It was a long process that I wish I had anticipated earlier.
Eloping for a Down’s syndrome Toddler
Down’s syndrome toddlers are known for wandering off, which is known as eloping. It is amazing how quickly they can disappear when they want to. It was the most difficult when he was young, which for Timothy, meant up to the age of about 13. We have found him on a busy street, in a field with a bull, a field with horses, at neighbor’s houses. There have been several scares.
In the beginning, we would use locked gates blocking the front door… but he would always figure them out. For awhile, I used a GPS tracker on him, and it worked wonderfully one day when he managed to walk a mile away down different streets. Unfortunately, our service wasn’t great at the time and it wasn’t always very reliable. Another time, after searching on our own for an hour, we called the local police who, thankfully found him before the helicopter arrived to begin searching. He was so scared.
By around the age of 13, he finally understood that he can’t do that. However, I don’t think he understands the danger of it though. More, he understood that he scared me, and I didn’t want him to wander. I remember once when he was about 8 years old, he got in the street and a semi pulled right up to him and he just stood there looking at it. Down’s syndrome toddlers don’t have the normal fears that typical toddlers do.
One thing I have done to keep better track of him is to keep him in bright colored clothing. For years now his t-shirt selection revolves around red, orange, and yellow. He becomes much quicker to spot if he wanders off.
Special Needs with My Down’s syndrome Toddler
I know that anticipating all of these challenges listed here might be overwhelming for new parents of a Down’s syndrome child. My intention is that it will serve somewhat as a helpful guide. As I look back over Timothy’s toddler years, I don’t just see the struggle; I see so much joy. I even see so much growth. He is so full of love and laughter. He has such a beautiful relationship with each of his siblings. Yes, we have struggles and learning curves that feel like they take forever. We have moments that we don’t know how to navigate. He really does have Special Needs that take extra time and patience. But it is still such a beautiful journey that I am grateful to be a part of!
