Merriam-Webster tells us that one definition of placement is: the act of finding an appropriate place for someone to live, work, or learn. For parents of children with significant special needs, this only begins to capture the meaning of the word.
It typically starts soon after the diagnosis when placement in an educational program is made, such as in a birth-to-three center or developmental pre-school. In later years, it might be in an “autism classroom”, a contained learning center (CLC), or an adult transition program.
At some point, if the trajectory for our child is that he or she will need life-long care and oversight, a parent might allow the thought of out-of-home placement to enter the mind – meaning that one day, our child will live somewhere other than with us at home.
We certainly know that we will not live forever – no matter how often we say that we must!
For those living with ongoing, severe behavioral challenges and disrupted sleep, there is a cumulative physical and emotional toll on parents. The reality is that there will be a time when we can no longer provide the intense 24-7 supervision that many kids require. We may have some vague idea of what options exist for “if and when that time comes”, but many parents tell me that they can’t even take that first step to find out.
In today’s blog, we’ll take some first steps in discussing this difficult topic and offer some tips for parents who are nearing this major decision. Of course, thinking about your child living somewhere other than with you is one thing – and feeling it through is another – so we will address the emotional aspects as well.
Start with asking yourself some questions and thinking through the answers.
Most of us tend to ask these questions when considering out-of-home placement:
- “Who will know and care for my child more or better than I?”
- “His behavior isn’t going to change when living somewhere else – so why not keep him at home?”
- “Why wouldn’t I keep him at home until I’m old and can’t do it anymore?”
- “ Doesn’t it make sense to ‘get the behavior under control’ before making a move?”
- “ Aren’t parents supposed to sacrifice all else for their children?”
Some answers in response:
- No one is going to know or love or care for your child better than you. No one can. But others can get to know your child and provide loving, caring supported services just as teachers, aides, therapists and caregivers have over the course of your child’s life.
- Chronic behavior isn’t likely to change with a move to a new setting. The point is that the daily care for your child will be spread out and shared by those who don’t live it 24-7. Staff works their shift and goes home when done, unlike parents who don’t get sick or vacation days and have been doing this, often with no help, for many years.
- Is it a good idea to wait until you are physically unable to care for your child? Making a move in the midst of a crisis is never easy and options may be limited.
- Haven’t you been working on behavioral challenges for many years? Is it realistic to think that this is possible? If you were able to get the behavior under control, you would have already done it and you might not be considering placement yet.
- Of course parents make sacrifices for their children. To what extent, under what circumstances, and for how long are the more specific questions that are harder to answer.
Here are some other questions to consider:
- Will you need to continue to work when school has ended for your child?
- Have you taken steps toward your own future such as retirement planning?
- How is your physical and emotional health?
- How’s your marriage doing – is it thriving?
- Do you want and need some time – for the rest of your life?
- Even with significant special needs, our kids grow up. Isn’t it in the natural course of life to move on and away from parents?
- Aren’t there many other young adults (who have come before your child) who have moved away from their parent’s home to other living arrangements and are doing well there?
- Does society have a responsibility to share in the care of its most vulnerable citizens?
Do your homework ahead of time
As with all services for our kids, the demand is often greater than the supply, so be proactive and gather information early, before you need it. Some parents report wanting to get on waiting lists well ahead of time but we have found that until the process is officially initiated and proper approvals completed, this isn’t an option.
Most parents have heard of group homes in which a number of people live in a home and receive supports and services through a provider agency. Other options in Washington State include alternative living services, supported living services, intermediate care facilities and residential habilitation centers. There continues to be much discourse on what options best fit the diverse needs of this population of our kids and on the funding to provide them.
To learn more: Developmental Disabilities Administration (DDA) website is:
While the website describes various settings and services, the specifics of each are not spelled out, so it will be necessary to delve further in order to fully understand. Remember how difficult and confusing it can be to access and navigate systems when they are new to you so . . .
Ask for help
As with most issues involving your child, asking for help is necessary. Remember that you aren’t the first family to face this situation and that many families have come before you. Ask your child’s providers (doctors, therapists, and teachers) for information and support. Other parents are a good source if they have taken these steps already and can help guide you through. Your child’s case manager or wrap services coordinator also can and should help provide information and advocacy. Reach out and ask for help.
I recently sought out one of my most trusted advisors, the one who diagnosed my child, and he, as always, shared some wisdom from years of helping families. When I began to rattle off my reasons for wanting to explore the future, Dr. Cowan stopped me and reminded me I didn’t need to justify it. He understood. He told me that he believes that there are some conditions that society has a responsibility to share in the care of, and that autism is one of them. I found that comment so validating and comforting. He understood how hard it is and assured me that what I am feeling is the normal course of life with significant special needs. I needed to hear that.
Take small steps in preparing your child
Many parents report that their child has never slept one night away from home – and this is understandable for many reasons. For young adults who have never spent the night away though, it is a big change to make a move out of the home. If at all possible, take small steps by having your child spend the night away from home, perhaps with other family members, on family vacations with you, or in a respite home. We are forever trying to increase their adaptability and distress tolerance by introducing new things that often test their comfort zone of sameness and familiarity and this is just one more thing on that list.
Prepare yourself too
As my child entered the “transition years” at age 16, I allowed the thought of her living elsewhere to occupy my crowded brain. More importantly, I have allowed my being to feel this and it has been hard. I have such mixed feelings about it. It’s the classic head vs. heart argument where I know it will be the right decision when the time arrives and that we all will adjust (as we have to so many other things) yet my heart hurts knowing I will miss her and worry about her. Let’s face it – I will worry about her no matter what or where – so that alone can’t stop me from taking steps forward. As she is about to turn 18, we have taken other steps including preparing for guardianship, special needs trust, government benefits, and her life skills/vocational/educational program.
Talking through feelings with family, friends, or a professional can help you process the mixed feelings. Your every move has revolved around your child for many years and the idea of this changing will feel foreign. Many parents report feeling guilty whenever they consider their own needs. Remember that guilt is an appropriate thing when you have done something wrong. You have done nothing wrong. Guilt can keep us mired in indecision. It also doesn’t serve you or your child at all. It will take time to adjust so be patient and gentle with yourself and your child.
Last night I thought and felt through what it will be like when the day comes and she is not living with us any longer. One of the sweetest sounds I know is when she is finally settling down at night, quietly humming to herself or giggling at some inside joke we’re not privy to. With tears welling, I grabbed my phone and recorded her voice.
One small step at a time . . .