Anxiety About Colin's Future

Carla Forbes
My name is Carla Forbes. I am one of the founders, and I'm on the Board of Trustees of the FamilieSCN2A Foundation. I am a mom to a wonderful son named Colin and he is a Spitfire. He is non-verbal, and has vision issues and coordination issues but loves roller coasters and loves thrills.

Louise Tiranoff
And how old is Colin now?

Carla Forbes
He is 13 and I’m struggling a little bit, like, mentally, you know. I feel like I'm in a new transition with Colin where I’m starting over again and it's frustrating.

Louise Tiranoff
Does it have to do with transitioning into adolescence?

Carla Forbes
Yeah, it's transitioning into adolescence. And in the community the school is preparing us for when we leave school, and what that looks like. So there's a whole new set of rules, especially depending on where you live. And then with the climate of the economy in the world right now, things can change. It's not going to happen until he's 22 but at the age of 13, you start the conversation. For so long, you're used to this. I know all the rules for school and his rights and things like that, and now that's going to change and it brings up some feelings. Can my child really be independent? What needs is he really going to have? You look at everything factually, but then as a parent it hurts your heart a little bit. To go down that rabbit hole… Right when you get used to where you are it's like, okay, let's start again.

Louise Tiranoff
I can understand that. He lives with you now. Are you thinking that might not always be true?

Carla Forbes
It's like anything where it depends on the state you are in. Should he go to a group home? What does that look like? They're not recommended really highly, you know. But at the same time, there's rules where he can't live with you anymore. He has to have his own place or his own address. So who would be living with him? Someone that you trust but that brings up a whole new can of worms in the sense of, who can we trust? What does that look like financially and is there any support from the state? What does that look like and what is he going to do all day?

Louise Tiranoff
Is it a law that he has to actually live outside your home at a certain point?

Carla Forbes
I'm starting to learn about it more but it depends on your funding. If he lives with you, you don't get as much support from the state, whether it's supplies or income or whatever he can qualify for. But if he has his own residency it opens up more opportunities for him. The parent can no longer be a caregiver to their child, whereas right now, Colin has a program that's called a “personal care attendant” (PCA) where someone comes in and they do all of his activities. Parents can't be considered a PCA for that program, because you're the parent and you live with them. But if you go to another state, parents do qualify for that. So if a parent decides to stay home with their child, the parent can get that funding for themselves but in this state, we can't do that, so it's hard. I think I'm taking a time for myself and just acknowledging, okay, it sucks, but we're gonna do it.

Coping with Uncertainty with the Help of the Community

Louise Tiranoff
Do you see a need for resources and experiences for the parents to help get ready for the transition to adulthood?

Carla Forbes
Yeah, and I think it's still developing right now at out foundation. Colin, 10 years ago, was three, so I think there's a big cohort of us families that is transitioning into adulthood soon and there's not a lot of us in the foundation ahead of us. Parents start comparing which helps tackle emotional but also factual concerns. It’s like, “just tell me how it was. Did it suck? What did you love? What was the one thing that really helped you the most? Or what's the one thing you wish you started sooner?” Just listening to their story I get ideas for myself and for Colin too. 

Louise Tiranoff6
Well, you've done such amazing work with the foundation and getting all the families together into a good place. 

Carla Forbes
We pride ourselves with our team. Without everyone we wouldn’t have the support and the drive and the acceleration of how it's going right now. We're very lucky for that, it's definitely a group effort

Louise Tiranoff
I think it's great Carla and the way you described it is really helpful. I love the question you asked your peer, “What's it like? Does it suck?”

Carla Forbes
I think when asking for advice, like when you're first pregnant for example, some people will be hesitant to tell you certain things. So when you experience those things you're often like, “I wish someone told me about this!” It kind of breaks that wall a little bit to ask “does it suck?” It sends a message that this parent wants to know the nitty gritty and to approach it like that. People don't want to scare us, try to protect us, but that type of protection actually hinders us and our children. I want to know the highs and the lows, so I can mentally prepare myself and prepare my son for whatever that looks like.

Louise Tiranoff
It creates a little cushion underneath you, to all be open and honest together.

Carla Forbes
I've always thought that I've gone through the process of grieving for my child. Now I think, at this point in my life, when I started hearing about this transition, it really hit me hard. I'm like, “what's wrong with me, like what's going on?” Everyone grieves or goes through their emotions at different times in their life. Some families do it right from the beginning and some, like myself, have it right now. I have to give myself time to really be okay with that or I'll never move forward, you know. In reality, people grieve when the universe says, “okay, this is your time.” All of us parents going through this right now… we're at the beginning of a new path and acknowledging our own feelings as parents. We’re leaning on our community and getting ready to really start the hike. That's where we are.