Special Needs Spotlight || Torryn

Hi, I am Sinead. I am a wife and a busy Mom of 3 wonderfully kind and chaotic crazy kids and 2 neurotic dogs. Torryn is our eldest at 10 years old and he has Down Syndrome and Severe Speech Apraxia. We are from Melbourne, Australia and moved to California for my husbands career in 2015 but we’re just about to move to Seattle! I am a Health and Wellness Coach working with Special Needs Moms on their health and wellness, because I am a strong believer that us Moms make the world keep spinning. We are the center of the chaos and we need to make ourselves a priority, we need to take care of ourselves properly so we can in turn take care of the ones we love. You can read more about my work here, or visit my FB page here.

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Miggy: Hi Sinead and welcome! Thanks for sharing your story here on TLM today. Let’s start at the beginning, when did you first learn that your son, Torryn, had Down syndrome? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Sinead: Torryn was actually born in Bangkok, Thailand, we first found out Torryn has Down syndrome on day 3 of his life. It was difficult initially. I was alone in the hospital nursery with Torryn and the doctor came and requested I sign some paperwork. I looked up and asked her – what did I just sign? What was it for? She was a Thai Doctor and in broken English she said, “For genetic test, we think he have Down syndrome. He have funny eyes.”

I had never met anyone with Down Syndrome, I didn’t know much about it. I just knew what it “looked” like. We were very blessed as there was a nurse that worked at the hospital who had a son with Down Syndrome and she would visit us each day. She spoke to us about her son who was in his 20’s. She was so kind and so generous with her time and compassion and as we learnt more about her son – he was a photographer and rode a bike and used a computer – the future slowly brightened. Within a week I was over the initial shock and ready to prepare for the future. We quickly realized that as long as he was happy in life, he felt loved and found joy, that is all that truly mattered and ultimately it’s the same for all of our children. It was just we were receiving that life lesson earlier than most. You can read more about his birth here. Torryn is a sweet child, he thinks he is a comedian and will do almost anything for a laugh. He has his challenges, tantrums and mood swings, there is no doubt he is no angel. He can be cheeky and sneaky. For example, he needs to learn to pick up his undies instead of flinging them over his head like a cowboy before every bath. Occasionally I still “grieve” his challenges in life. That usually happens around milestones such as an IEP when everything he is “lacking” is documented or when I realized he was turning 10 years old, but still couldn’t speak because of his Speech Apraxia.

His Apraxia has been so much more challenging than we expected. But it is what it is and we will get there eventually.

Miggy: Of course most conditions exist on a spectrum and Down syndrome is no different. Can you tell us a little about Torryn and explain how his needs affect your day-to-day life? Or do they?

Sinead: Torryn has a dual diagnosis of Severe Speech Apraxia with Down syndrome and if I am honest I feel the Apraxia is more challenging than the Down syndrome. Initially the most obvious impact for us was when our youngest was born. We had Torryn 3.5 years, our daughter Edith had turned 2 years the week before and Art was a newborn and it was absolutely effing crazy. I don’t know what we were thinking! It was like having 2 year old twins and a newborn. How we got to now with an inch of sanity left, I have no idea. But I have plenty of material to blog about from those years and the misadventures we had – they are gold.

Now I see the impact in our lives with moving – again – and finding schools and districts that will support his needs. I have been finding that incredibly stressful with our latest move, as I know how much of an impact the wrong school environment could make, not just on him but all of us. There is a financial impact that comes with that too.

Sometimes Torryn can be like having an over zealous 60 lbs toddler who thinks he knows better, but really doesn’t, while still challenging us for a level of independence. So it can be messy and scary! We definitely keep a closer eye on him than we do his siblings. For example, he has no fear of water and will jump into the deep end of the pool without a seconds thought – he is getting lessons – and will do anything to get a laugh from people which can – at times – lead to situations that are dangerous or highly inappropriate – like the time he mooned a girl at school and thought it was the funniest thing since sliced bread.

Miggy: Are the worries you have for Torryn different from the worries you have for your other kids–if so, how? On the flip side, what are you hopes and dreams for him?

Sinead: Yes, I definitely worry differently for Torryn than I do for Edith and Art. I often feel Torryn is much more venerable in life and in society. We are fortunate that he doesn’t suffer fools and can have strict boundaries when it suits him. But it’s not always with the right people.

I also worry about his speech. Speech opens up a world of possibilities that I a wish for him. My worries and concerns for Edith and Art are different, they are more ’normal’ parenting worries… like, am I just generally effing them up? Lol!

My hopes and dreams for Torryn are that he will one day be able to have some independence, be it in a community housing situation or something similar. I would love to see him employed and holding down a job. But ultimately my dreams are the same for all my children, I just want them to be happy, feel loved and find joy in life.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Sinead: I am also a true believer in laughing through life. However I don’t know if I have any that are specific to Torryn having Down Syndrome. But being a parent in general has lead to so many lines I never imagined possible:
– No playing with your penis at the dinner table!
– Stop! You’re eating Poo!
– Please stop licking the dog.

Miggy: Down syndrome is one of the most widely recognized disabilities, yet misunderstanding, fear and discrimination still exist for those with Down syndrome as well. With that in mind, how can people best approach or respond to your son? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Sinead: People with Down syndrome are definitely pigeon holed and stereo typed – they are all so loving, they are kind, they love music, they hug strangers… Generally speaking I know people mean well and don’t feel they are being rude or hurtful, but it gets a bit boring.

I wrote a blog about this, it was generally well received, but interestingly I also got some kick back around it too. I was called out for making fun of people when they were just trying to be nice and told that two wrongs don’t make a right and I should be sharing and educating people about Down syndrome instead. But I guess it wasn’t everyones cup of tea, can’t please everyone.

But I won’t lie, I find it condescending when strangers literally walk up and touch Torryn’s face or stroke his hair and then look at me and say – he is just beautiful – like he is an object or a puppy. He is a little boy and you have more than likely just pissed him off! Speak to the child, not the disability!
Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your other children and their relationship to your son?

Sinead: Yes – I was shocked to realise that some siblings take on the role of being perfect so they don’t bring further disruption into the family home. I was blind sighted by this as I was so focused on dealing with my youngest son’s jealousy it hadn’t occurred to me that my daughter being ‘perfect’ was a problem. I just thought I was being an awesome parent with at least 1 out of 3 of them!

It’s taken time on my part to spend extra time with her and being clear that it’s okay to get mad and to let me know when she is sad, needs help or is dealing with something. I am Mom and I can handle her worries too. I also see that having a sibling with a disability has made my children more compassionate and kind. I see how gentle my kids can be towards other children and possibly less quick to judge… of course with each other it’s kill or be killed.

Miggy: You are also a health and wellness coach and said that you are starting to shift some of your focus onto wellness coaching specifically for special needs moms. If you could just give one piece of advice to your fellow special needs moms out there, what would it be?

Sinead: Yes! I am so passionate about this. I was super sick after our 3rd was born. For 4–5 years I was in and out of Dr’s offices and was regularly brushed off. I was told, “You are a Mom, it’s expected that you are tired.” I was fatigued beyond belief, couldn’t lose weight, sick all the time. I was told I had depression and I was a hypochondriac. However after 4 – 5 years I finally got a diagnosis of hypothyroid and celiac disease and I feel like a new women.

Like so many Special Needs Moms I hit burn out. It’s real! We are often exhausted and over stressed. Did you know that many Special Needs Moms carry stress levels that are comparable to Combat soldiers and mothers of children with intellectual disability were 40% more likely to die of cancer; 150% more likely to die of cardiovascular disease and nearly 200% more likely to die from misadventure than other mothers. It’s crazy statistics and it is not okay! We have to start looking after ourselves.

I don’t know if I can stop with 1 piece of advice, am I allowed to give two?

Hydration. We are a world of chronically dehydrated humans and we need to drink more water! Our bodies are made up of approximately 60% water, dehydration can literally have a massive impact on our entire body and our minds from aches and pains to brain fog. Drinking water can make a massive difference to our daily lives. A good rule of thumb is to drink half your body weight (lbs) in ounces each day and more if its hot weather or you are doing workouts.
Breath Work. It takes 2 mins, it’s free, you can do it anywhere, any time and it can change your day and your life. It’s a simple tool, with just 4 steps:
1. Exhale completely through your mouth making a whoosh sound.
2. Close your mouth and inhale quietly and slowly through your nose while counting to 4, while pulling the breath down into your abdomen to make a big buddha belly.
3. Hold your breath for a count of seven.
4. Exhale completely out through your mouth to a count of eight.

Repeat this 2 to 3 times, and do 2-3 sets of this a day.

Miggy: Lastly, what is the biggest lesson you’ve learned since becoming a special needs mom?

Sinead: Patience – I have improved, but I haven’t mastered it. Not sure if I ever will, but I am always working on it.

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Sinead, that was so awesome. First, I LOL’d at your great parenting lines… I mean c’mon kids! No penises at the table! Haha. I loved your candor and honesty about everything from the shock of finding out your son has Down syndrome to the fact that you work with special needs moms to help them focus on their well being. The part of your interview that really stuck out with me was the stereotyping people often do with those who are disabled, and Down syndrome in particular. I think there is this idea that we sometimes have to treat disabled individuals with kid gloves. We have to laugh extra hard at their jokes, we have to smile extra big, and be extra nice… and honestly sometimes that is warranted. Just like we’re typically extra polite when we first meet someone new, I know not everyone knows what to do, and they want to be EXTRA NICE to make sure we know they mean no harm! Ha. I get it. BUT at the same time, we must be careful not to stereotype and as you said, “speak to the person, not the disability.” And HECK NO to walking up to a person and thinking it’s OK to touch their hair or face without permission because that person has Down syndrome! Yikes. When in doubt, treat a person with disabilities the same way you’d treat another person of the same age. The important thing is to always try and see the human, the individual, above anything else. Thanks again Sinead, you’re a rockstar mom.

As always if you or someone you know would like to participate in the Spotlight please email me at thislittlemiggy at gmail dot com. I typically share interviews of special needs parents or individuals with a disability, but I would also love to feature more people in the Trans community as I recently did here.

Have a great weekend.
XO,
Miggy