Caring for children with special needs! What happenes when they are no longer children?
As I sit here writing this post I am hiding from my children. I have locked myself outside and they are all watching a video while they wait, rather impatiently for me to come in and cook their dinner.
Why am I hiding? Because I need this 30 mins to myself. Caring for children is a full time job. There is no clock on and clock of for this position. It is 24 hours a day, 7 days a week, 52 weeks a year until they are grown and in some cases, forever. I also feel the need to process and think about our future.
My sons psychologist asked me the other day if we had started to prepare for the future? Until she asked that question I honestly had not even thought about what would happen if my boys didn’t leave home. It didn’t even occur to me that they would have to be in care for the rest of their lives.
So it got me thinking, this may not be a temporary thing, we may have one if not all of them living at home with us well into adulthood. While it doesn’t bother me that I will have to look after them, they are my babies, I will care for them forever, whatever their needs may be. But I hadn’t considered the ramifications.
Where will we live? Certainly our four bedroom home is not going to be suitable. You can’t expect grown men to share rooms with their brothers. Also our girls are younger and will probably also still be at home for at least part of their 20’s.
How will we all get around? Will they ever be able to drive? Will they be able to manage their own finances? Gosh, will they ever be able to cook and clean and organise themselves for each day?
The questions have started to mount so high in my mind that I honestly don’t even know where to begin! After they each received their diagnosis of Autism I spent time mourning the loss of the future I had dreamt up for them. They were never going to be star athletes and they were never going to be school leaders or public speakers and I didn’t care, they were going to be loved and happy.
What I failed to consider is, what if they never have a family of their own? What if they can never get a job? The what if’s are now spreading through my brain like wild fire. The little things I had let go of seemed so huge at the time, I am now realising that they were completely insignificant.
It’s now the big life goals that I am concerned about. How do I help them achieve these things, what if they don’t want them? I have been taking this journey day by day, sometimes hour by hour. It is only now that I am also realising that I have to start to prepare for next year and the year after etc, not just tomorrow!
So here is my dilemma? How does one prepare for caring for an adult with special needs. Do I start saving now for a huge house with bedrooms and space for all? Do I start looking for a block of land where the boys could have their own granny flats on our property but still have some sort of independence? Do I, god forbid, look into care facilities for them if something was to happen to myself or my partner?
I am at a loss. Their daily needs at this stage are already huge. Upon recently applying for some respite assistance the registry informed me that with level of care needed, they would have to send 2 carers at least. This came as another surprise.
So to finally reach the point of this post. Are their any other parents here on steemit that are in the same situation? What are your plans? Are there any parents on here that have grown children with special needs? Where did you start? Is it to early for me to be redesigning my entire future around a possibility not an absolute?
Your suggestions and feedback would be greatly appreciated!
As always thanks for reading!
@mumofmany
I am not in the same situation except in one sense: I am a parent. Like you, I spend most of my physical and emotional resources investing in a future I cannot know.
I am also an occupational therapist, and have been for long enough to know teens and young adults who were once toddlers in my care.
Maybe that's why I don't have the same blissful ignorance as most parents of "neurotypical" kids. I've seen quite a few examples of lives that aren't going the way people expected. Will my child grow up strong and healthy? Or will he succumb to accident, illness, addiction..? I can't know, and in fact can't possibly help the outcome by worrying. Parenting is terrifyingly beautiful.
I'm writing a lot on your post, and not sure if it's helpful. It's just that your story and others like yours are precisely the reason I began blogging (initially not on Steemit). There's just so much more to raising kids with special needs than we get to cover in an OT session (or 20).
I live in the US so cannot help with local resources, but I'm happy to talk with you about strategies or just listen when you need to talk.
Terrifyingly beautiful! Those words capture parenting perfectly.
It is true, all parents have the same worries and concerns, no one knows what the future will hold.
I know our OT feels the same way as you do, there is never enough time to cover everything so we just address the most crucial needs at any given time.
I appreciate your comment and concern. It definitely makes a difference w to be able to share my journey here.
Thank you
I'm not in a position to give you any advice @mummofmany but I can give you a little encouragement. I know you are focusing on the '"What if's" and that does make a lot of sense but after reading your heart felt words, I can't see past the, "What Now's." And what I see is a loving and devoted mother; one who is giving of herself unselfishly 24/7 and one who is blessing her children with their greatest needs which are unconditional love, and support. I pray that you will receive the answers you are seeking and in turn, peace of mind and rest for your soul. You are doing a phenomenal job and I truly admire you for this.
Wow, thank you so much. Your words mean more than you know.
Thank you.
Your strength shines through your words and I’m sure you have what it takes to overcome many hurdles but also to find joy and fulfillment in challenging situations. Stay strong @mumofmany 🌼💖🌼
Wow, these are some serious questions to consider. Hopefully there are some professional bodies out there who can help as well? I know in Queensland we have autism Queensland who may be able to assist in answering some of these questions.
I know it depends on the individual, but I do know a few very successful adults with autism. Have you seen the Temple Grandin movie starring Kate Winslet?
All the best @mumofmany
As for the movie I haven’t seen it but I will definitely be looking it up!
Thanks
Hi, thanks for your comment.
We are registered with Autism Queensland for our younger 2 boys but as the funding stops at 7 our oldest didn’t receive any assistance as he had aged out of their program. They are assisting us in contacting respite care however long term it all depends on their needs, unfortunately until they reach adulthood, we just won’t know what their needs are.
All the advice I have received is to plan for the absolute worse case scenario, I just don’t know what that looks like!
Thanks again.
Gosh, some tough things to think about and it seems you're a super woman doing what seems at least two carers' worth of work!
It's so hard to know what the future will bring.
I think that is the scary part. Not having any idea of what their future looks like. The level of care could be simple guidance or it could still be hands on 24 hour supervision.
Thanks for commenting.
I can't even begin to imagine the difficult choices you are faced with. The only thing I can say is that you have been caring for your kids for so long already and nobody knows what is best for them better than you. You will know the right decisions when they come. You can always start planning ahead and being prepared for some possible outcomes but until the time comes you will not know what is the best course of action. Just trust in that you have been doing a wonderful job already and that won't change as they get older. They are lucky to have you.
Thank you, I’m lucky to have them.