Last week, episode 13 of the podcast, I told you all about how my son’s really great support workers moved on in their lives and their careers in education. And I explained that this had largely decimated his social life because my son needs support to do most things.
I’m not sure what to do about it!
So, the first two things I’ve done are:
1. Go back to vision
2. Ask people I trust to help me think it through.
One amazing thing that has happened since I published that episode and sent out a link to the podcast by email…
Did you know that I can send you an email to the podcast every week? If you’d like me to do that you can just email me at email@example.com and I’ll be sure you get those emails.
Anyway, the great thing that happened is that people reached out.
Community – people who get it – people who will help when you need it. It’s awesome!
Here are a few examples. My friend Lisa Flannagan sent me a message on Facebook telling me that she had some thoughts and that I had said I wanted to be held accountable and she had some thoughts. This is great.
When most of our advice comes from professionals, doctors, therapists, teachers, counsellors, etc. they are unlikely to say, “Dude, you are messing this up. You have some unfounded assumptions, limiting beliefs or some mindsets that are holding you back.” But friends can do that for you.
Janet wrote, “[I] …wanted to wish you support and strength. I love your two-step process for such tight spots…and think of these as giving yourself safe room to breathe. Good for you.
One action-oriented step that you might make is to get the folks who are in Will’s life (aunts, cousins, friends) to bring will along to any social community or neighbourhood or event that they are going to for the next while. Even if not strictly aligned to his interest, there will be the right people at the church gathering, at the music café night, at the local hockey game cheering, at the local fundraiser for x,y, z. Among the people, he will be well present,,,,,, he may spark a new interest, he may connect with someone you had not yet thought about – and at the very least, while you are biding time and re-building his preferred social life, you are adding to the life and possibility of the community.
Just a thought,
Be well, Janet”
Paul Young said, “If you wish I could call you or you call me and we could talk about it. One thing I can say is, look at Will’s interests and who are the people who have the same. For me it was music.
Forget the disability.
As you know making connections is very Important.
I hope this helps,
Paul (with his phone number attached)”
Paul’s podcast episode can be found here.
I have other conversations set up and pending. I’ll keep you in the loop!
Probably the most important update comes from my personal reflection on my vision for Will’s life.
That vision includes Will spending time in places and roles with people who can and will give him the support that he needs because he is a member of that group and they like him, want him to be there, and do not feel the need for paid support for that to happen.
I reflected on the places that Will’s paid supporters have typically supported him to meet and develop relationships, meaningful presence and really be a member.
I SHOULD HAVE BEEN DOING THIS ON AN ONGOING BASIS BUT I GOT STUCK IN THE EASE AND SAFETY OF PAID SUPPORT! (Sorry for the yelling but seriously…why haven’t I been thinking about this?!)
One example of that is Will’s membership at a local church. Will has been a camper in their annual summer camp for years now. He has been a member of their Youth Group. And he has participated in countless events and activities over the years. He is very well known.
I started to wonder if this might be a place where Will could go without paid support.
There are many barriers. The group meets upstairs. Will needs personal care and a lot of support for meaningful participation.
But I took a deep breath and made the leap.
I called the youth pastor.
Explained what I wanted.
He was open but nervous.
He talked about volunteers. I talked about friendships. He got it.
I gave him permission to mess up and forgave him in advance.
We talked about scaffolding.
First an older teen friend known to the youth leaders, the kids and who knows Will very well will go. She will model how to support Will to be a member of the youth group by engaging the other kids in a “no big deal” kind of way. The pastor will have instructed the leaders to intentionally observe her role modelling.
Over the next few weeks she will continue to attend but will gently start encouraging the youth leaders to identify opportunities and go for it themselves. Always in the back ground so that nobody feels unsupported, too nervous, scared or self-conscious.
Eventually, when everyone is comfortable, she will stop attending. But either she or I will stay in the lobby just so that the youth leaders know that there is someone in the building that can help if they need it.
The goal is that eventually they will tell us they don’t need us anymore.
We will see how it goes!
On the day this episode airs the youth group is having a parent night. So, my job will be to show up and be warm and open and not intimidating and to be encouraging and flattering all in ways that make people feel comfortable. BUT NOT in ways that communicate any kind of charity or pity vibe.
I’ll let you know how it goes!
This is an example of how our vision is leading to a good life our son.
I’m going to be offering a free masterclass that breaks this down even more and tells my son’s story. If this idea of having a clear and positive vision for the life of your child with a disability is something you think might help you make good decisions and think creatively, then I’d love for you to join me. There are a couple of dates and times available and all the information can be found at goodthingsinlife.org/masterclass.
Thanks for Listening!
Resources & Links Mentioned:
Free Masterclass – A LIFE OF BELONGING: The critical first steps.
Podcast Episode with Paul Young here.
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Started young with a sister with a disability, amazing mentors and a strong mother with a vision. Now a mother to two sons, one of whom has a disability, a midwife to many, and an activist with a mission to band together with families to joyfully pursue the good things in life. Genia’s a registered midwife, International Board Certified Lactation Consultant, MSc in Evidence-Based Health Care (student), Speaker, Presenter, Podcast host, and founder of Good Things in Life which offers resources, courses and networking opportunities for a community of parents with a shared vision of the good things in life for their children with disabilities.