Guitar music gently playing.
Melanie 0:00
Hi! And welcome to Well Balanced Life! Where we talk about life with special needs. I'm Melanie and my daughter Gracie who is now 19 has joined me on the podcast so that we can share our experiences, and strategies, and tips and tricks that have helped us over the years. Last week, Gracie shared what life was like for herself having autism. And this week, I would like to share a parent's perspective.
Melanie 0:26
Raising a child with special needs can definitely have its own challenges and even though, um, many of you who are listening, might be raising a child or even an adult that has special needs, all of our stories are different and unique. The things that we share on this podcast are meant to provide some hope, and understanding, and just to offer some strategies that have worked for us over the years. But just because they have worked for Gracie, it doesn't necessarily mean that this is the best fit for everyone.
Melanie 0:55
Gracie had a speech pathologist and an occupational therapist. And a physiotherapist, and a teacher and psychiatrist, and a pediatrician, and oh my gosh... a handful of, um, Sick Kids doctors...counsellors. There was a lot to take in and a lot to learn. We did choose to have a special needs adoption, and with that, we didn't have the grief that many families feel when their child is first diagnosed. And that can be a whole other podcast on its own, um, you know just the whole grieving process and the stages that many families go through. And for us, it was a bit of a relief. Um, we knew... autism had been on the table for some time, um before her diagnosis. It's one of those things that, I mean there were quite a few red flags that were leading us there. But she also had her own trauma from the adoption piece as well that we needed to consider.
Melanie 1:53
We were given a few pamphlets, um, I read every book you can imagine on adoption and autism, but then honestly when the autism diagnosis came in to play, we just focused on that completely.
Melanie 2:06
We had challenges and struggles, probably, I would say more so when she was younger because the meltdowns were like, at an all time high. And that, that wasn't easy. You know, going out into public places, or even just dealing with them at home. I had two other young kids who needed their mom's attention and um, balancing that can be really hard. But we've always kind of looked at it in a very positive way. Where her siblings were learning patience and understanding, and seeing someone else's way of learning just different than theirs and we had to figure out how to make it work for everyone.
Melanie 2:43
So, to put the positive spin on it, we've always talked about Gracie's diagnosis in a positive light. You know, it doesn't define who she is...her whole self. But it is a part of her. And it's a part of our family. And there...there are some great benefits to being in a community of other special needs families. The amount of love and understanding and strength that you witness when you're with other people who just get it, it's kind of hard to explain that or put it in to words. But I do recommend if you ever get the chance to do activities with your kids, you know whether it's a music therapy group or equestrian therapy, yoga classes, uh, for kids on the spectrum. Those are really great things to do because not only does your child benefit, but you benefit too by meeting other parents who are kind of in the same situation as you.
Melanie 3:36
The support groups...those can be challenging, only because there's a lot of negative talk. And that's not a bad thing. If there are parents that just need to vent. Right? (with a little laughter) like we can go in to a room and talk to each other about all the struggles we're having that can be a real stress reliever. To just vent and get things off your chest. Where somebody's not going to judge you because they totally get that your kid is annoying you! (With laughter) right? We can say that out loud. But then it can also be really hard, especially if you're newly diagnosed, um, to go to a support group and hear those things. Because, it is on the negative side, right? There's a lot of complaining about the school system, or the funding options, or the lack of services that are available. So, that can be frightening, so I would suggest going to, like I said, a music therapy, or art therapy, or you know something where it's just an activity where you guys can hang out and do fun things together and meet people in the process.
Melanie 4:33
We know that families can really struggle. There are some families who can't go to the grocery store because of the smells, or the sounds, or the lighting. There are families who can't eat dinner at the dinner table together. There are families who are struggling with constant screaming and crying, and that can be challenging! Or not sleeping. Like I said, every family is different, and for us, you know, we couldn't eat as a family. Those were...these, these were little things that we had to, we had to set these small goals, to reach the big goals.
Melanie 5:06
I'm not sharing all that with you to make you feel scared, or worried, that things won't get better. My intent is to let you know that things can get better. It just takes time, and educating yourself, learning your child best, and advocating for them, and their needs as best as you possibly can.
Melanie 5:28
So one thing that I would like to leave you with today is...um, I've been writing a, I've been writing a book (with some laughter) for quite some time now. I don't know what I plan to do with it. Whether I self publish or don't publish it at all, I have no idea. But I thought this might be a good section to just read to you from the book, um, on our perspective and, especially if you have a newly diagnosed child. I know this can be a very scary time, um... but what I highlight here is...is this:
Melanie 5:56 (Guitar music gently plays at 7:05 until the end)
Your child is still the same person they were before getting their diagnosis. The diagnosis does not change who they are. It will not change their hair or their eye colour. It will not change their personality or their loving heart. It will not change how they love you. They're still the same person they have always been, before they walked through that door.
Will life be more difficult? Maybe.
Will there be times where you or your child will feel so overwhelmed and frustrated you just want the day to end? More than likely.
Will there be times that you question your ability to parent your child or (with laughter) even like your child that day? Probably.
But will there be times of hope and excitement? You bet.
Will there be unconditional love wrapped in patience and understanding? Definitely.
Will you get to witness a miracle? Absolutely!
Most importantly, you will be blessed to have a love that not all parents get to experience. A love that is felt so strongly in the most unusual ways. Whether it's the first time your child says, signs, or gestures, I love you. Or the first time they give you eye contact. The first time they smile at you or give you a glimpse into their world. The first time they tie their shoes after months of trying so hard. You will witness an unconditional love amongst them and their siblings or friends like no other love you've experience. You will worry about them and how they will be treated. You will lose sleep at night with worry, you will have moments of wanting to hide in the closet so you can have just 3 minutes to yourself. But... you will have a support group of other mamas and dads too who will stand beside you and hold you up. I can't express enough how powerful the autism community is, or any other community that is full of parents with children who have these wonderful abilities. You are not alone. And that's something else I don't want you to forget, so I'll say that one more time too. You. Are not. Alone.
