This past Tuesday I went to my monthly support group meeting for parents of children with autism. I enjoy going. As well as the networking component, I get out of the house and don’t have to worry about bedtime for a night.
I brought Cuyler’s IEP hoping to get some of the other parents thoughts/input on the direction to take it this coming school year. There was some conversation about it and I got some ideas and then the meeting went on, discussing upcoming fundraising events (anyone want to come to a comedy show at Club 54 on Sept 24 – lemme know). We chatted about this and that…
I was looking around the room, as I do each meeting and think about how we came to gather every month the same room with friends we never would have met.
I think of how we all rubbed our pregnant bellies. Decorated nurseries. Chose the perfect name for our babies. Brought them home to begin a new life together.
I think of how we all rubbed our pregnant bellies. Decorated nurseries. Chose the perfect name for our babies. Brought them home to begin a new life together.
And had no idea what life had in store for us. That for a few months – or a couple years – things were “ok”.
Then we had the rug pulled from under us. We all somehow, somewhat, regained our footing and were able to move forward and do what our kids need us to do.
We met a new group friends we never thought we’d meet. It’s where we can laugh, cry, discuss, debate, collaborate – all without judgement. A safe place.
Then we had the rug pulled from under us. We all somehow, somewhat, regained our footing and were able to move forward and do what our kids need us to do.
We met a new group friends we never thought we’d meet. It’s where we can laugh, cry, discuss, debate, collaborate – all without judgement. A safe place.
This week one of our moms needed us. Her family has been in crisis for some time and it came to a head last week. We were all brought to tears as she spoke. We were there for her. Told her she was brave – because I think she is. I told her her decisions were good ones that I think will be only a be a benefit to her family. She has no supportive family. Or friends.
But she has us.
We also discussed the future. Something I don’t focus a whole lot on. It scares me because I don’t know what it looks like for Cuyler. Our goal has always been for him to live a full, independent life. That is our greatest hope for him. But we are realistic. We know that might not happen and Sean and I have said that if he is unable to live on his own then he will live with us. We would ensure that we have a private living space for him where he can live as independent as possible. With Sean and I still “overseeing things”.
One of the parents asked last night “But what about when he’s fifty? And you can’t look after him?” I had no answer.
Then it hit me like a ton of bricks. The rate of autism is currently 1 in 96 boys. Why is this not a bigger deal to society?
These children with autism are going to grow up to be adults with autism (sorry Jenny McCarthy – we can’t all recover our kids like you did). And their parents – at some point – will be unable to care for them. And then what?
There is such a lack of funding, support and programs now. How are our children going to be supported as adults? There is going to be an unprecedented number of adults with autism requiring services now that autism is reaching (has reached?) epidemic proportions.
There is such a lack of funding, support and programs now. How are our children going to be supported as adults? There is going to be an unprecedented number of adults with autism requiring services now that autism is reaching (has reached?) epidemic proportions.
Maybe that’s why I don’t think too far ahead. Living with the day to day challenges that autism poses is exhausting. Mentally, emotionally and sometimes physically. But knowing that the challenges just get more challenging as he grows up make me appreciate right now. I want to keep his little hand wrapped in mine as long as I can. It won’t be little for long.
The thought of what lies ahead as a parent of an adult with autism – I just can’t go there.
The thought of what lies ahead as a parent of an adult with autism – I just can’t go there.
Not yet. Not mentally or emotionally…
One day at a time, my friend. I was at that place a few years ago. The teachers and doctors said he’d never graduate high school, never drive, never hold down a job. Thank goodness we never listened. Got him the best therapies available. The best schools. Quit my job and taught him myself. He didn’t recover from autism. But he’s come so far! He is now 20, a high school grad, driving, and holding down a job. I used to worry about what will happen to him as an adult, when we’re gone. I don’t worry anymore. He will live independently. He has two younger siblings who will be there for him when needed. Sure he’ll never be a rocket scientist. But he is happy, productive, and thriving, a joy to have around. Don’t ever give up, and have high expectations for your child,regardless of what they tell you. No one knows what he is capable of in the years to come, no teacher , no “expert”, no doctor. One day at a time….
It took me a long time to finally read this message as it is a subject that has been the green monster lurking in the back of my mind. Bravo Christine for taking the time to start parents thinking. I have 2 boys with autism ages 15 and 12 and it has taken my all the strength to come to terms I will not be here to protect them forever. They will never live on their own. We have watched as other parents struggle with the young adults that are no longer eligible for certain funding and do not know what to do with their kids during the day. I want to scream that the government should do more but I am just one mother on her own. We need to stand together now and get programs into place because in an blink of an eye, our young ones will be young adults and where will we be?
Christine,
We always felt that way about Aidan’s sister(his angel) being responsible for him at anytime. She told us that anything ever happen to Aidan she would feel responsible.
Oh man. I’d say everyone worries about what the future holds for our kids… I understand your added stress though, lady. Le sigh. I think we can only do what we can do right now, and try not to look too far ahead – there are no guarantees anyway – so just try not to let yourself go there. Not yet. There’s time.
Sending hugs your way… xox
Christine there is a group here but I have never been able to get to the meetings consistently due to the schedule.. the one agency that I am with is trying to find a more suitable group for me. I kinda felt as though not too many people really understood what I go through – the Asperger stuff they get – it’s the other more complex issues they don’t – and I am glad they don’t – I wouldn’t wish it on anyone – It would be nice to meet with some other parents who are experiencing the same thing:)
I’m surprised there isn’t a group around where you live. I thought there would be more available in your area.
I’m sorry to hear about the newest diagnosis. Just another added bit of stress that you could have done without, but I know you’ll do best by your boy.
I’m really hoping. We have a decade to go before Cuy finishes high school.
You’re right. I know we have time.
Wow Meghann! That sounds terrific!!
Hopefully there will be programs in place like that around here by the time Cuy is ready.
While I am grateful that Cuyler has Cam and Eva, I never want them to have to be responsible for Cuy. They may feel a sense of responsibilty, but I don’t ever want to put that on them.
It is so hard! I never really thought about what would happen to our Joshua or Zachary until just recently – I have to. Joshua is entering middle school so this is a whole new ball game. That then got us thinking about High school and so on. With Joshua he is so so smart so I never really thought about him not going to post secondary but we have been hit with a new diagnosis on top of the aspergers which is much more harder to deal with – a mood disorder – bipolar. This now puts us in a much scarier situation because now I have to deal with the future to ensure that anything happens he will be taken care of properly because as he gets older life may become more difficult to deal with on his own.
You are lucky you have such a great support group – I don’t have one yet but am working on it. As for Jenny McCarthy – argggg is all I will say!
I can definitely say I can relate! Thank you for sharing this insight.
jayme ~ Mother of Autism.
little weepy….
I plan ahead as best I can, until I get to ” what if Im not here” and have to stop. cause it hurts.
will his brother take over ( please god )
will he have a friend? Just 1 FRIEND, like in the movies who will always be by his side…
I cant think beyond now orthe next couple of years.
Im so grateful for our group, and of course You C, and you know why.
Sometimes now is all we get, you know? Enjoy it. Live it as best you can. I’m a big planner, I’m ridiculously organized, and would love to be able to see forty years into the future. But one of the lessons of grief, for me, was that today is golden. When it’s time, you might have more options available to you, more family and community support, and a couple of additional decades of wisdom. It’s not time, yet.
We don’t like thinking about it too much either, although we have talked about it some so we’re not in complete denial about the possibility. We root Logan on, and push, but there are days that I can’t see how he’s ever going to live alone completely. It’s really hard to think about, but we still have 11 years until he’s 18, so we have some time.
My dad linked me to one thing that I was excited about. I had been upset because Lindsay had asked when Logan is going to college, and I couldn’t answer her. This college has a program for special needs kids, where they can actually live at the college and get the full experience. It’s mostly job and life skill type classes, but one thing I really really liked, is they keep an eye on them, and any that seem capable of getting a degree, they steer them towards that.
So no matter how things turn out, Logan at least will be going to college. I’m going to try to not think about the rest quite yet.
Don’t go there yet Christine. Don’t. Enjoy Cuy’s triumphs and wade through his struggles now. You’ll figure it out – and you’ll have Cam and Eva to help you figure it out as Scotty will have Will. xx