Sometimes it’s hard to get the social and emotional support as special needs parent. You deserve to be more than an afterthought for others.
Yes, special needs mommas, dads and caregivers. You deserve to be more than an afterthought for other people: you deserve social and emotional support like every other parent.
What do I mean by being an afterthought?
As parents and caregivers of special needs children, we spend a lot of time caring for our children. We don’t always get to go out. Going out and taking trips is not impossible, but it does take a LOT of work and preparation.
We do travel with my six children. To learn more about how I take my six children (five with special needs) to Disney, head over to Magically Capable for my planning tips and resources.
Because it’s harder for us to just pick up and go, and sadly enough because our children can make “normal” people uncomfortable, we don’t always get invited to places or gatherings. More than one autism parent has had to turn down a last minute gathering because there wasn’t enough time to prepare the child(ren) for the change in schedule, and the resulting meltdown that would inevitably come didn’t seem to be worth the trouble of uprooting everyone.
When the invitations stop coming in…
Our family has personally had the invitations stop coming because we had to turn down too many last minute invites (even though as the kids have aged we’ve been able to increase their flexibility with their schedules).
We’ve also had people not invite us because they don’t want to “deal with autism”, or because one or more of my children “creeped them out” by saying something inappropriate or was unable to have a conversation that didn’t inevitably lead back to Mario Super Brothers or Pokémon.
It’s difficult when other people don’t get it.
It also hurts.
This is when you become an afterthought for people.
When you’re afterthought the non-invites become a self-perpetuating cycle. They don’t think to invite you (because you’ll likely say no), but then feel bad and end up inviting you (without enough time to prepare), so you do actually have to say no.
It can be a vicious cycle.
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A painful example from my own life–
I recently heard from a sibling with a casual text mentioning this particular sibling was in a city within driving distance of me. We’ll call this sibling Jaime. Jaime texted me two days after they (Jaime and daughter) arrived in the city. This city is sufficiently far enough away to take lots of planning for my family to go there, but it isn’t impossible.
Especially when it’s during the time so many schools are on spring break. Which was the case; we were starting spring break.
Jaime had tickets to an event in the city, which Jamie had purchased at least a month or two in advance. The airline tickets were probably purchased before that as well.
We live thousands of miles apart from each other. My sibling and I haven’t seen each other in 10 months (when we attended a family wedding), and Jaime hasn’t seen my kids in three and a half years.
And we were an afterthought.
Jaime and child knew they were coming, they knew we were within driving distance, and yet they didn’t tell us.
To add insult to injury, I had actually been in the city with my children PrincessBallerina and Acroboy the day before. It had been a long day, but a good one for them. (Until Acroboy got food poisoning-but that’s another story).
We could have seen them then.
Nope, because we were an afterthought.
If I’m perfectly honest, I think Jaime and daughter are uncomfortable around my kids. Jaime’s daughter was one that my second-oldest, Whirlwind, hugged for a bit too long. (Whirlwind is away at college right now, but who cares about little details like those?)
Once someone decides you make them uncomfortable, it’s difficult to help them change their minds. They have to change it for themselves.
So what do you do when you’ve become an afterthought? How do you regain some social and emotional ground and support?
1. Cry
I am going to give you full permission to cry. Cry because it hurts and it sucks and it’s lonely. Cry because people you thought you meant something to–forget you. Cry for all the frustrations and exhaustion and lack of support from others.
It’s okay to cry. People can really suck, and life is hard.
2. Listen to me when I tell you, “You matter.”
You matter. You have the biggest heart. You wouldn’t be here if you weren’t trying to figure out how to help your child with special needs. I’m guessing you are also looking for ideas on how to personally keep on going. You give and give of yourself and don’t really ask for anything in return. You need to fill your bucket and feel you matter.
Well, you do matter.
You matter to your child, you matter to me, and you matter to God.
3. Find a friend who just gets it. It will likely be another special needs parent.
Everyone needs a friend, and I’ve found one of my best friends is one who also has a child on the autism spectrum. All we have to do is say, “the school called,” and either one of us immediately goes into support mode. We get each other and the struggles we face. We know what it’s like to advocate for our children and how challenging it is to get them to advocate for themselves.
You may find this friend through a community support group, a local resource night, church, or simply observing other families with disabilities and striking up a conversation. (That last one has worked for me).
You can even reach out to me.
When you find a friend who gets it, you don’t have the judgement, misunderstanding and intricacies to explain. They know why your kid keeps trying to get to school in the same outfit as they wore the day before (worn clothes are more comfortable than clean, fresh ones).
They understand when your kid’s echolalia kicks in and don’t judge you when your child is saying “suicide” like the announcer on Halo -after he played with his dad and brothers and accidentally killed his own character (yeah that really happened to us. That was a fun conversation with the school…not).
A friend who gets it will have your back. You can count on each other to get together and be there for social occasions as well as for emotional support.
4. Find something that enriches you personally.
Lately I had our counselor remind me that when you get on a airplane in the safety demonstration and when you are traveling with smaller children (who depend upon you), the crew tells you if the oxygen masks are needed, you should put on your own oxygen mask first before helping others.
Why is this necessary? Well, by the time you get someone else’s mask on them, if you haven’t done yours first, you may not have enough oxygen and therefore consciousness to put on your own.
Then what happens? How do you keep helping these tiny humans dependent upon you if you aren’t even awake and breathing?
You’ve got to get your oxygen.
I’m not advocating shirking of responsibilities, but advocating finding something that brings you strength and resilience to keep fighting the good fight.
For me I’ve found several things (in case circumstances don’t permit one from happening).
- Reading my scriptures. I find strength and peace in the Word of God.
- Similarly, uplifting talks and podcasts have helped me immensely
- Blogs and books of those who have been there. Reading about others’ struggles helps me know I’m not alone.
- A good friend (see above)
- Walking in the sunshine with my face to the sun. It makes me happy.
- Decluttering my home. I feel better as I shed emotional, mental and physical clutter.
- Walking/hiking in nature.
- Traveling someplace new.
- Taking in an art museum (during school hours).
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- Making something creative/crafty.
These are just a few of the things that help me feel more energized and ready to go again.
5. Have your own gatherings.
It can take a lot of work, (which is why we only do it twice a year), but have your gathering. You can plan the time and place, minimize necessary distractions and choose the guest list. We do this on New Year’s and Independence Day. Nice thing is we’ve done this for so long we know who will likely come if invited and who actually plans on our gatherings. (It’s a nice feeling to know they count on it as part of their plans).
Moving forward
I hope moving forward from here you start implementing at least one of the ideas to gain social and emotional support as parent of special needs like autism. You are an amazing person with so much love to give. Don’t ever forget that. And you are definitely not an afterthought to me, nor are you ever an afterthought to your child.
Hang in there.
You got this.
And remember to have a “bee”-utiful day.