We all start somewhere! Sometimes we know about our children’s disabilities before they’re born, sometimes it’s evident when we first see their beautiful faces, and sometimes it’s a slow process of realization. Some parents even start out with perfectly able kids but accidents or injuries start them on a new path of care and support for their children. I feel like no matter when you put the pieces together, we all feel a little alone. Over the years with my kids, I’ve grown to value the experiences and suggestions from parents who’ve tried different techniques, products and approaches who have kids a little older than mine, or who’ve been working with kids with disabilities for years and years (thanks momma – she was an educational assistant and early childhood educator for decades before she retired). So, if you don’t have a friend or family member to guide you, I’m here to step in!
We were in the slow realization camp when we started our path as parents to a child with disabilities. She had a perfect birth, she was a snuggly, content, good-sized baby. She slept and nursed well. She made eye contact and smiled at the usual times. But around 6 months she struggled to do gross motor tasks. She didn’t sit independently, she didn’t crawl until she was one. She didn’t walk until she was almost two. Oh, and that sleeping thing? She gave that up at 4 months and really hasn’t done it again since. She took a long time to eat solids, she couldn’t figure out that darn pincer grasp for the longest time and when she clapped she only moved her left hand and kept her right one still to make contact. It took us until 9 months to understand and acknowledge that she was different and needed more support. Since then we’ve been on a journey that changes constantly. We’ve tried a million things – some of which were wild successes and others epic failures and I’ll be sharing those along the way. We’ve lost “friends” who couldn’t handle the complexities of our family. We’ve also gained some who really get it and why it can sometimes be so hard. Without further ado, here are my tips for parents just getting into the special needs or disability parenting scene.
What is Special Needs Parenting?
Parenting children with special needs can range from kids with physical disabilities to those with Autism, ADD/ADHD, Cognitive disabilities and many more. As parents, we see our kids struggling. Sometimes that’s with particular tasks due to physical limitations, sometimes it’s with the social challenges of being a kid that is different. Sometimes it’s with behaviours that are connection-seeking but are completely inappropriate. Sometimes it’s all of the above. It can be a wild ride, but it can also be an incredibly beautiful one.
Common Misconceptions we face as parents of a child with a cognitive disability
Getting Started on your Journey as a Special Needs Parent
Tips for success as a parent to a child with disabilities
Common Misconceptions we face as parents of a child with a cognitive disability:
“She’ll catch up!” – this is often a misplaced kindness that people try to bestow on us. Our baby’s brain is different and it’s hard for other people to swallow.
“She looks normal” – yup, from the outside, she’s a tall, curly-haired beauty that’s all arms and legs. But one conversation with her would raise your awareness that she’s not your average 8 year old.
“Aww, I feel so bad for you” – please don’t. Does this life have its challenges? Heck yes. Does it have so much joy that it sometimes feels like I’m going to burst? Also, heck yes. This girl is the physical embodiment of love. She’s HILARIOUS – she seriously has the best sense of humour. And for every worry I have for her in this life, I also know that she’ll approach that concern with curiosity, enthusiasm and sass.
“She doesn’t sleep? Have you tried a weighted blanket?” – I know that people are trying to be helpful, and that common sense often isn’t all that common, but this question and other versions of it pertaining to what efforts we’ve put into trying to support this kid can get a little frustrating. Yes, we’ve tried a weighted blanket. And a sleep routine. And melatonin. And meditation apps. And changing up bedtime. And making sure she gets enough movement in the day. And that her room isn’t too hot or cold. And complete darkness. And a nightlight. And the list goes on. Other parents haven’t been through the complexities of having an 8 year old who functions at a 4 year old level that just needs her mom. Believe me, we try EVERYTHING!!!
Getting Started on Your Journey as a Special Needs Parent
First, you’re already here, so you’ve started your journey – or you support a family that is on their journey.
Second, find your people!!! It’s not always easy. There’s a special needs or kids with disabilities FB page for every town, find it and the moms in there. The one in my town is not my cup of tea, and it hasn’t been a great resource for me personally, but maybe you could find a support squad in there for your town. If your kid is in a supported development program, take the opportunity to go early and meet other parents. Start something like playdates, evening mixers just for parents etc. to meet like-minded moms.
Third, make time to care for yourself and engage in projects and activities that you are passionate about. At first, being a mom was all I cared about being. But there really is so much more to life than that. Now, I get to be mom AND work, play, create, design, write and see all of those projects come to life. Being mom is a never-ending endeavour that I love, but there’s a huge serotonin hit that comes with the completion of a design project or a job well done!
Tips for success as a parent to a child with disabilities
Trust your gut – we know deep down when things aren’t right and need more help or different people/support. Trust that and follow it.
Find others who’ve been on this path who are a few years ahead of you. They have ideas and strategies and even products and toys and tools that have worked that you might try.
Don’t take yourself too seriously. For us, the joy in this journey has been in the laughs. Our kid is all kinds of inappropriate at times. It embarrasses some people, but that’s their problem. We choose to find the humour in these situations because it diffuses the tension, opens fun conversations and can completely change how people interact with our child.
Do your research. It’s never ending for us since our diagnosis is so vague and we live in a tiny town with very few resources. Every time something new pops up for her, we are on the lookout for new info about how we can help.
Don’t be afraid to be pushy. Maybe it’s just me, but our kid has had 6 pediatricians. Not because I scared them all off, but because our small town doesn’t have a steady one and I’ve travelled to a few towns and had the rotating ones that come here every few months. It means I have to be really on my mama bear game to get anything done. It’s frustrating and annoying that I have to repeat her birth/health/development history every time we meet a new provider, but I’ve met lots of other moms who haven’t had nearly the services and support that we have just because they were afraid to be too pushy.
Ask for help. I’m not great at this one either, but if you’re drowning, you’re not going to be the best version of yourself for your kids. Ask for help in whatever way you think you need it. Time off – seek respite care. Equipment – find out what community projects, donations etc are available. Professional support – seek out local pediatric physios, OT’s SLPs and Chiropractors. Just an ear to bend and a shoulder to cry on – call your sister or mom or friend and tell them you need help.
The Last Thing You Need to Know About Special Needs Parenting
YOU GOT THIS! We get asked all the time how we do it all. Our lives are busy and full. Our son plays hockey and loves golf, our kids go to separate schools, our daughter has a full social calendar. We work and develop our businesses. We still find time for our family, friends and eachother. AND our kid has disabilities. It means more appointments for health and development professionals, more meetings at school, more worries about how her life will look in 5, 10, 25 years. More sleepless nights, more time teaching life skills. And we do it. We do it because for us it’s our normal. We don’t know any different, and we just get it done. It’s not always as quick as we’d like, or as perfectly finished as other people, but the day’s work needs doing and you can do it.
Hopefully by now you’ve made a list of people who you can call on for support, started your deep dive on researching you kid’s diagnosis and needs, found some reason to smile about daily life with your kids, mustered up the bravery to speak plainly about what you need from your health team, asked for help where you need it and carved out some time for yourself. If you haven’t started, here’s your nudge to get going ;)
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Xo,
Sarah
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