It’s not something you hear a parent say every day. It’s not “my daughter has a dental appointment today” or “my son had a meltdown today” or even “I had an IEP meeting this afternoon.” But the words ran over and over through my mind as I drove home: I moved my autistic son to an adult foster home today.
Neil’s 18 now, diagnosed over fifteen years ago, started talking at age five and a half. He has an emotional delay of about five years and the executive function skills of a typical seven-year-old. He has received various therapies since before the age of three and received a modified diploma last month. He likes to read Jules Verne novels and National Geographic magazines. He loves listening to Creedence Clearwater Revival and Bob Marley. He loves watching action/adventure/disaster movies and wants to go to film school and work for Disney.
Yes, he is all of those things and more, the good as well as the challenging. He has epilepsy (the kind with grand mal seizures) and all of the doctor appointments, lifestyle changes, and medication issues that go with it. He also has bipolar disorder and all of the tribulations that go with that. I won’t go into detail about his history of aggressiveness and other behavioral issues. After years of careful observation, intervention, and lengthy, exasperating medication changes, we have successfully resolved most of these issues. Why then, I have been asked, have I still pursued placing him in an adult foster home?
In a word, need. After over thirteen years of single parenting a special needs child, I need this. After a lifetime of subsisting on the scraps of my attention and having to watch out for his older brother, my younger son needs this. And after coming to terms with one disorder after another and grasping at whatever semblance of semi-independence there is for him, Neil needs this. And he wants it. For months we researched adult foster homes in our region and found a highly regarded one that he liked that happened to have an opening right when he was ready to move. Right place at the right time.
Still, as I drive back from my son’s new home, forty minutes away, the guilt creeps in. The feeling that I’m not doing what I’m supposed to do as a special needs parent, that he’s supposed to live with me until I die and I’m not honoring that unspoken code. But why should we think that way? Is it pride? Is it duty? Is it love? Is it just…playing the hand we were given?
Yes, it’s probably all of that. But I say if we can trade in one of our cards so that we have another option, we shouldn’t feel regret at doing so. We still have the same hand – we can just do a little more with it now. Fulfill some needs. Maybe things will turn out even better than we’d hoped. And if they don’t, we can make changes. After all, we want the same basic things for all of our children, with or without disability. We want them to be safe and we want them to be happy. And if those things can be achieved outside of our home, there should be no chagrin, no second-guessing ourselves. There should be a sense of accomplishment, as with any other milestone.
This is my child, whom I’ve nurtured and shepherded into adulthood, like any good parent. We’ve experienced some different circumstances along the way. But just because I may no longer be his primary caregiver does not mean that I’m not going to be involved, that I don’t wonder every few minutes how he’s doing, if my trust was well-placed, if he’s safe and happy. No matter how confident I feel about my judgment, there are no guarantees. Some of us are not satisfied with that, but I cannot live in fear, and neither can Neil. If there’s one thing he’s taught me, it’s to never give up. And I won’t. Whether he’s living at home with me or living somewhere without me, I’m still his mom. Nothing changes that. Nothing changes the love. Nothing ever will.
As I read this my 17 year-old son is off at a Christian/Aspergers summer camp 4 hours away from me. He drives me completely batty when he is here. He spends so much time focusing on negatives instead of the blessings in his life. Yet, while he is away…I can’t stop thinking about him for one minute. I sort through the pictures that the camp puts up online every night, looking for some semblance of happiness on his face. Is he o.k.? Is he having fun? Is he making friends? Is he comfortable? I have to let go and just let him be. I pray that it goes well for him. As I pray that it goes well for Neil. Of course, I will be following your story to see how he is doing. We may be following these footsteps in a year or so.
Love and hugs my friend,
Karen
Such a time of transition for both of you. You are a good mom. Thank you for writing this. Nothing changes the love. Nothing. xoxo. Breathe.
You are a good mother, with good instincts and you know your son better than anyone. All will be well, and if it isn’t you will change course, but no matter what, you have been, are, and will be, the best mother Neil could ever have.
My daughter is 33. She has developmental disabilities and I too, needed her to move out, to live on her own. She wanted it too. We’ve had some ups and downs in this journey, but last fall she married her longtime boyfriend and they are living together successfully at this time. If you get a chance, you might read their love story: http://outoneear.com/a-special-needs-couple-finds-love/ –just in case that is something you want or hope for your son. My blog does have some more things about this. But please don’t feel guilty. You are giving him new skills to survive in a world when you (someday) may no longer be there to help him out. My daughter does great most days. Right now, we’re there on the bad days. Congrats on being brave enough to do the right thing for your son. Regards, Linda Atwell, Out One Ear
Pat yourself on the back. Neil would not have been ready for this transition if you had not given him so much love and support over his lifetime. I think this is the biggest gift we can give to our children. The gift of independence.
Oh, Tanya, I am so proud if all 3 of you for reaching this milestone, and there should be no regrets over this move. You are and have been and will continue to be so much more than just a “good parent” to both your sons, which is why I’m so honored to know you. You know this is certainly not “the end”, just another transition to roll through. Congrats for surviving!
I can’t imagine how hard this must have been for you all, but I sense, here, and from knowing you in some small way over the years, that your decision will lead to further positive growth and goodness for you and your sons. I look forward to hearing all about it and hope that the transition goes smoothly!
You do good, my daughter. Much love and support, Mom.
My son is 14 and I am slowly heading to where you are now. Such a hard thing to have to think about and do. Respect to you.
I can’t believe it’s taken me so long to find you!!
So much to think about now that school is finished. I look forward to reading more about your new path as what I have read so far seems very similar to ours.
You are lucky to be able to do so. I know that where we live, waiting lists can be up to 10 years or so. He has a place to be with his peers. I really wish I could find a place for my oldest to be independent. Congrats!!!
Was very moved while reading this post, thanks for sharing. Your life story is so inspiring, I liked what you said about need and love, really nothing changes the love! All the best to you and both your sons.
Nothing at all. If you want my two cents, it is time for some specific practice to help you, not him, with the transition, and to come to perfect peace with the decision. I know your head is there, my prayer for you is your heart will reach the same place and you will rest in that place.
Love,
Bossy Boots
I am deeply touched by everyone’s support and encouragement in what has been one of the most difficult decisions of my son’s and my life. Thank you for your comments, thoughts and prayers, and love.
You are an amazing mother who loves her son. Loves him so much that she will do what’s best for HIM which is what you have done. Neurotypical kids grow up and move from home around this age. They shouldn’t (hopefully) stay at home for ever. It’s a wonderful thing that Neil can leave the nest and have some independence. That is healthy for you, for him, for everyone 🙂 This was a great post and one every mom should read! 🙂
Tanya, thank you for your best encouraging post for parents Round the world. I salute you for your judgement and courage. I am sure you have done all the best for your son. All the parents should read this. I pray things goes smooth for Neil. love and prayers for a dedicated and courageous mom.
Tanya, you did not make this decision lightly. You made it with advice from experts and in the best interests of your child…and for all of you. For differing reasons this resonates with me. Firstly because we had to make the decision to place my mother in a nursing home a few years ago. It’s primarily the person who needs the care that takes precedence but it’s also about the whole family. You’re no good to them if you’re ran into the ground. There are always those who will disagree. Ignore them. They don’t live your life and they don’t know Neil and his needs like you do.
The second reason this resonates is because I did some letting go myself this week… eek…. it is NOT easy!!
Finally, my husband left home at 17 to live and work in Dublin city! Different, but not really when you think about it. Supported living is independance for Neil 😉
The VERY best of luck.
xxx Jazzy
Sunita, thank you! I appreciate your time in writing the comment, and your support. I think of you and all the other parents at ACN in Nepal every day and hope that you and your families are well. Love and prayers to all of you also.
Namaste
Tanya, thanks for sharing your valuable experiences it give us courage and strength for solving our problems.
Tanya,
Thank you for pouring your heart out on the page. Your words will inspire many. Although I do not have a special needs child, I see the struggles my in-laws face as my husband’s grandmother slips further and further into dementia. She has been moved to a higher care facility and it is always a challenge to balance the right place for her. However, we know that she is getting the best care that could be provided for her at this time, which offers some solace for the family . I pray the same for Neil and for you.
All my love to you and Neil in this new chapter, dear friend!
I think, despite your reservations, you know this was something you all needed. But you are also open-minded enough to know that needs change; what we need now may not be what we need later. So there’s no reason to feel any guilt and I hope that feeling evaporates. As needs change, you will adapt in whatever way is best for all of you. I believe in you, Tanya!
i hope you’ll be able to push the guilt away…this is a new chapter in his life, and in your life, and events like this…big, life altering events…are what give us new chances and bring unexpected opportunties our way. and certainly new challenges, but you’re both tough, bright…can’t wait to hear how this goes, what he thinks of it all once he gets his bearings there. such a big step, my thoughts are with you guys.
[…] help them bathe, or carry them up the stairs. Others look at residential homes for their child, as I did last year. And when they’ve been there for two months and the caregiver calls you and says, “He’s not […]