Tag Archive: autismacceptance


I came across this and figure it’d be a good reminder with the holiday season about to ramp up.

 

Originally written by Heather Boorman 
And can be found here:
5 Ways Friends Can Support Parents of Children on the Autism Spectrum

 

“I know many of us are probably glad to have another Halloween behind us and don’t really want to revisit the holiday for another 360 days (or in three days when our kids start planning what they’re going to be for next Halloween). Bear with me, though. This story does include Halloween, but it isn’t really about Halloween at all.

My husband Jon and I often work opposite schedules, and Halloween 2016 happened to fall on a night when I was parenting solo. I mentioned this to my friend, Rachel, who immediately invited me and my three kids over to eat dinner and trick-or-treat with them.

About halfway through dinner, I could tell my daughter KBear, who is on the autism spectrum, was getting overstimulated. About three blocks into trick-or-treating, she said her legs hurt. About three-and-a-half blocks into trick-or-treating, she said she wanted to go back. My 11-year-old and 4-year-old were nowhere near being done.

Before I even had a second to fret about what to do, my best friend came to the rescue! I’m pretty sure Rachel was wearing a cape and there was a superhero anthem playing in the background as she leapt in and calmly asked KBear, “Would you be OK going back with me? I think the baby’s had enough, too, and we can just go back and relax.” KBear slowly nodded her head and journeyed off with my friend. My shoulders dropped, my mind eased, and my boys and I carried on and stayed out as long as they wanted to.

I remember the first time KBear had a meltdown in front of Rachel. I wasn’t sure what was going to happen or how my friend would respond. I heard her son ask questions and express uncertainty about what was going on. And then I heard my friend calmly explain to her son, in a nonjudgmental and totally compassionate way, that KBear has some differing wiring that can make it difficult to control her body and emotions sometimes. I heard my friend help her son relate by bringing up examples of moments when he had felt out of sorts or overloaded. I heard my friend calmly ask what she could do, what would be helpful, and I saw her patiently sit with calmness, acceptance and love. She occasionally asked if there was anything she could do and then refocused attention off KBear’s meltdown by quietly entertaining the other kiddos. After the meltdown, my friend hugged me, told me I’m a good mom, and reinforced that she’s here for whatever I need.

I am tearing up now as I write about it. Why? Because I feel she was perfectly supportive. Because so many people respond differently. Family, friends and strangers oftentimes back away. Occasionally, they’ll stare or say rude comments. Sometimes they’ll give unsolicited advice. And I get it. Many people don’t know how to respond. Most often I don’t feel like I know how to respond, and I do this every day. How can I expect other people to understand and know what to do?

I didn’t realize just how much I was missing the type of support my friend provided until she gave it to me. I know my family and friends are there and would do anything to help, but I didn’t even know what would be helpful to ask for. They regularly ask what they can do, or tell me they don’t know what to do. And until Rachel intuitively showed me, I couldn’t put words to what I needed.

So I’ll use Rachel’s beautiful examples to highlight what I, and possibly other parents, would find helpful in the midst of a meltdown.

1. Respectfully taking initiative. One of the things I appreciate most is Rachel respects my role as the parent and follows my lead as I’m dealing with KBear, but she simultaneously steps in to simply do the other things that need attention. She entertains the other kids. She continues making the snack. She provides quiet space. In the midst of managing a meltdown, my mind is working fast to try to address safety and emotion regulation. I cannot always think beyond the immediate risk to provide direction for all the other stuff. It can be helpful when others just take the lead on those.

2. Occasionally asking if there’s something I need. She doesn’t ask too often, which I find helpful given my state of my mind, as described above, but every once in a while I’ll hear a simple, “Anything you need?” It reminds me my daughter and I are not in it alone. It gives me the opportunity to ask for something we’d need without having to take my full attention away from my daughter.

3. Validation. As parents of children on the autism spectrum, we sometimes live in high stress. We often need to simultaneously plan everything out and be prepared to have all our plans derailed as behaviors occur. To be seen, to be heard, to be validated, I’ve found, can be so incredibly healing.

4. Validation. No, this isn’t a typo. We need validation of the challenges, but we also need validation that we’re doing a good job. It can be so easy to doubt ourselves as parents. And something that worked yesterday may not work today. We can easily feel like we’re failing or completely screwing up. Hearing from my friend that I’m a good mom, hearing from my family that I am patient and compassionate with my daughter — these are things I cling to on the days when my thoughts tell me otherwise.

5. Eyes filled with compassion and acceptance. I feel this is by far the most helpful thing. I’ve found fear, uncertainty, worry and concern can all start to look like judgment, whether intended or not. Eyes that turn away because they don’t want to stare can feel like avoidance, judgment, or like we’re all alone, or that we’re too much for others. Looking the meltdown square in the face, seeing the people who are in pain underneath the behaviors, and showing compassion and straightforward acceptance helps set my mind at ease. It helps me be able to focus entirely on my daughter and my own reactions instead of getting distracted by potential judgment. It can create an environment of love, which girds me up to respond with love, which I think is far more effective in any meltdown situation.

And here’s the deal, it is necessary for us parents to have this. It is necessary for our own well-being to have at least one or two people who can provide these things. It is necessary to feel supported, understood, like part of a team. And sometimes, we can simply be blessed with people in our lives — like Rachel — who do these things naturally. More often, we may need to teach people what to do. Most often, loved ones want to help; they just don’t know how. And if you take the time to teach them, to assertively ask for your own needs to be met, you just might be able to enjoy trick-or-treating next year, too!”

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At first I wasn’t sure how / if I was even going to share this on the blog but with today being the start to Autism Awareness Month I think it would be rather fitting to finally share it.

I am writing this in hopes that someone can help or perhaps a bunch of people can help. I’ve already contacted many children’s charities, autism foundations as well as big name companies only to be turned away and I’m starting to feel deterred in even asking for help anymore. Like many parents with children who have Autism daily tasks that are simple and enjoyable for other children can be a huge task to even start for our family (like going for a walk when it’s nice out). For those who have read my blog before you are aware that my soon to be eight year old little man is on the spectrum and was diagnosed a couple of years back with being high functioning autism. Even though he is a happy, healthy little boy like anyone on the spectrum has his challenges it’s why I’m asking for help with our GoFund Me to help make his life a little easier. You see we are without a vehicle and when we had a vehicle (it was under Keegan’s biological fathers name and when we divorced he sold it) Keegan loved going on nature walks, special events (mostly train or animal related), camping and going on other random adventures that little did he know were educational all while being fun. Since 2013 Keegan and I have had to rely on family/friends for help, however since a majority of them work a standard 9 to 5  we can only get transportation help on weekends which means that during the week Keegan and I take public transit. This is overly tricky for Keegan since he gets overstimulated by the sounds/smells on public transit. Since we have no other option and are stuck to rely on public transit Keegan regularly shows up to appointments physically tired from being overstimulated, can’t focus at the tasks that need to be done and has mood issues/out bursts. If this wasn’t an issue in itself he has also missed out on school field trips, birthday parties, specialized events (like the ones held by the Canucks Autism Network and Pacific Autism Family Network) and even after school programs such as soccer, swimming lessons, gymnastics..etc. I know that asking for help with a vehicle is a lot to ask for but hopefully someone can help so Keegan can help feel like a “normal” kid and partake in things that he shows interests in.

I’ve already contacted every children’s charity, autism support group/organization/charity, Justin Trudeau /my city mayor / city counsel / other branches of the government, every local vehicle dealership and big name companies…etc all to be told “We’re sorry to hear about you and Keegan story but at this time there is nothing we can do to help” . Charities (like Variety, United Way, Presidents Choice Children’s Charity..etc) say “Funding is limited” or ” We don’t help with transportation have you tried contacting local companies“. Meanwhile those companies reply with “Sorry we don’t help individuals only charities , have you tried them?“.  I have even applied for disability grants, low income grants and children’s with disability grants all to be told they can’t help with transportation either. I have well over a hundred e-mails (No, I’m not exaggerating) to show that all these places that claim to help children with disabilities don’t really want to help ALL the children with disabilities even if their parent has letters from professionals (like their child’s pediatrician and speech therapist) backing up their request for help along with every piece of medical history showing that their child does in fact have autism.  Even our GoFund Me hasn’t had much help, don’t get me wrong I am very grateful for any donation no matter how big or small but I just though that perhaps with it being shared well over 200+ times we would of had more donations by now (as of writing this we’re at $20).

I’ve started asking for help and applying for grants at the start of this year and every day since then I’ve heard some sort of “No, we’re not going to help your son” even when asking if they could just share our GoFund Me link. I’m a mixed of emotions (angered at the so called children’s charities / autism foundations, frustrated at the situation as a whole, saddened by the fact that it seems like I really am doing this all on my own which feels like it’s going to take forever since we’re considered / are low income…etc) and as much as I feel like giving up I know I won’t/can’t because it truly would make my son’s life so much easier / better for him . It’s just now getting harder for me to stay true to myself when I am then asked for help by those in my son/my life or even complete strangers (Yes, I’m that person who will give a stranger my shirt or buy a homeless person a warm drink / meal…etc )because even though it’s easy to turn people away or leave someone in the lurch some times the smallest gesture can give someone hope and help them better themselves even if it is just for 24hours or perhaps change their mind about helping out others when they see someone in need of a helping hand.

If you want to read more about my son and my story or help our GoFund Me (by sharing or donating) our story can be found here :

https://www.gofundme.com/letsmakelivingwithautismeasier

I don’t really know how else to end this blog entry other than by saying that it really is true that parents will try to do everything / anything to help their children and to those who may be in a similar situation as my son and me don’t give up. I know you feel like you want to but don’t do it, you will find a way ❤

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