Mom to Mom: Wisdom Shared

May 1, 2018

Insights gained while raising a child with developmental disabilities

It’s the group that no one seeks to join – mothers of children with developmental disabilities. Like being picked for a team you don’t want to play on, for a game you don’t know the rules of, requiring skills you’re not sure that you have, being in this group will undoubtedly be the most challenging “team” on which you will ever participate.   The experience each mom will have within this group will be as varied as the diverse challenges of their children.  But, there will also be similarities in their journeys.

Fellow moms of children with developmental disabilities will understand more than anyone else in the world, how difficult it is to watch the blossoming of other new lives and to parent the child that never fully blooms.  They will sympathize that watching other children become all that your child cannot be, simply hurts.  And though the love of that child will often seem to seep out of your very pores, they know that you cannot choose to experience only the positive parts of this parenting experience.  It is never going to be easy.  For most of the early years, you pretty much just hold on tight and hope that you survive the roller coaster ride, as the days and years of raising your child unfold. Through those ups and downs, and beyond, the wisdom of those who have weathered the journey before you can provide valuable insight and guidance.

Don’t try to be an island.

Parenting a child with special needs can be an isolating and formidable undertaking.  Your parenting experience, and that of your friends and family members, just do not compare.  The exhaustive, typical tasks of parenting – meeting non-stop needs, juggling responsibilities, keeping a roof over their heads – is magnified when parenting a child with special needs.  Figuring out and satisfying the medical, educational, and social requirements of a child with atypical needs is an even heavier load to carry when so few understand what you are going through.  And, although you are the expert on your child, you are not the expert on the many treatments, tests, medications, interventions, learning needs, and social supports that your child may require. That grey cloud of “What else should I be doing?” constantly hangs over your head. The gravity of it all becoming a leaden weight sapping your energy and your spirit.  Reaching out, trying to find the right people to partner with on this journey, often seems like just one more thing to do.

But experienced moms say that you cannot survive with your sanity, without accepting help.  Do not try to do it alone!  Reaching out, and sometimes the more challenging – letting people in – will make the journey easier.  It will prepare you, and your child, for the day when your child will require someone other than you, to guide them through the rest of their lives. One mom said, “I wish I had known that it’s ok to let people help you.  I think if you learn to reach out for help from the start, it’s easier down the road”

Find your tribe

No one is ever going to understand your fears and frustrations, or joys and triumphs, better than another parent of a child with developmental disabilities, especially those who have children with similar needs or challenges.  People will try.  There will be empathy, sympathy, interest, and support, but it will not be the same as understanding gained of having lived the journey.

All too often people on the outside of the group can only see the problem, the absence of something important.  Focused on that, they do not see your child’s everyday accomplishments, the dignity of their struggles, or the purpose they have in this world.  They cannot truly perceive that it is not a tragedy that you and your child are living.  It is rather the unfolding of a life that doesn’t follow the “rules”, that doesn’t reflect the mirror images we usually see in each other.  And that results in discomfort for them, and their detachment from the realities you are experiencing.

That is why you need to connect to your tribe.  When the journey tests your fortitude and your courage, their experience and perspective will support you.  When the trials of raising your child overshadows the joys, burdens your heart with sadness, and tries to defeat you, their understanding and compassion will save you.

 Go ahead and worry…..within reason.

All parents worry about their children, no matter if they are toddlers or adults. For parents of children with developmental disabilities those fears just spread wider and deeper.  Our children’s challenges make them so very vulnerable and we know all that can go wrong.  The older our children get – the more unexpected threats, sleepless nights, and closed doors we experience – the harder it is to control that worrying.

The only thing your child is ever able to truly count on is your love, your stalwart protection, and your presence.  Letting go, sending them off anywhere without those three things within three feet of them, is a huge leap of faith and trust.  But we do……let them go.  They go to school, to camp, to jobs, to activities, to adult lives.  And, they often surprise us with their courage and amaze us with their resilience.

But be assured, your fears are not unfounded or unreasonable. We do not live in a world that welcomes our children with open arms, respects their value, or shares our varied concerns.  Do not let anyone tell you that you are being overprotective or your fears are limiting your child’s potential.  Instead, search for that frayed line between rational and unwarranted fear.  It will guide you to a place where you’ll get – almost, usually, hopefully – comfortable giving your child both roots and wings.

Plan enough, learn a lot

Some people get caught up in just surviving each day with their child and neglecting to plan for the future. Others are focused so far ahead that they lose out on the small joys of each day.  One mom advised, “I wonder where the years went. Many were difficult, but we mostly remember the happy ones. Learn what makes you happy and find that moment each day.  No one knows what tomorrow brings.”

Those mysterious tomorrows are what keep us up at night.  Each passing year, each milestone missed, feeding fears about the years ahead and the unknowns to conquer.  Whether you’re parenting a child with special needs or not, the future holds a wealth of unknowns. Health scares, financial ups and downs, global warming, Presidents with unique combovers – all contribute to making life too darn interesting. Add a child with a developmental disability to that mix, and the unknowns grow exponentially. Hoping for the best will not serve your child well.  But putting in place basic legal and care directives will contribute to your peace of mind, and be an important step toward conquering those unknowns.

Equally important as making concrete, long-term plans for your child is a commitment to ongoing learning about how you can support their dreams and ensure safe and secure tomorrows.  Our children, much more than typical children, will need help making their dreams come true.  Some will need us to have dreams for them.  Services change, supports evolve, opportunities come and go.  That is why keeping current, exploring options, and advocating within the systems of support your child will rely on, is critical with helping them move through life.  Reading a list of regrets of a mom of a forty-four-year-old man with developmental disabilities reveals the importance of this.  Each sentence starts with the words, “I wish I had been taught…. I wish I had sought…., I wish I had questioned…., I wish I had known….”

Prepare for a marathon, not a race

The more diverse and challenging your child’s needs, the more that each day comes to a close without a moment that you can call your own, a night of promised rest, or a schedule that went as planned.  So when opportunities present themselves – lunch with a friend, an unexpected hour of free time – don’t feel guilty about taking that time for yourself.  You will be doing exactly what you should be doing, taking long overdue care of yourself, so that you can take care of your child.

It may seem trite, like some ordinary advice from an ordinary parenting book.  But it is vital advice if your care and support will be needed by your child well after the age that most children become, essentially, self-sufficient.   So, if someone offers to care for your child for a few hours or, miracle of miracles, a weekend – say yes!  A mom who had a tough time letting anyone else take care of her daughter related, “It’s ok to go out with your husband and let someone else take care of her for the night.  It’s ok to not always do things yourself. It’s harder for me (now)….. because I didn’t start doing that when she was younger.”

Get real

Yes, you need to let people in, accept help….but what if no one offers, if no one is there when you reach out?  It will undoubtedly happen.  Finding the right kind of help at the right time is no small feat.  The energy it takes, the frustration involved, and the strength it takes to try again and again is draining.  There is no cure for this, there is only persistence.

There is also no cure for the pain of watching our children’s peers grow up and move on.  There is no escaping the “could have been’s” and the “should be’s” that overwhelm our bruised hearts.  Yes, we know that we must meet our children where they are, not where the world prompts us to think they should be.  And most of us are okay with that, eventually. But we know that the world may never be.  Awareness that it is the world’s loss does not diminish the reality of the exclusionary humanity within which our children must live.  We may have found strength, friendship, and understanding within the group of moms of children with disabilities, but can only hope that there will be a welcoming and supportive group seeking to include our children as well.

And, it’s just not fair……any of it.  A lingering sense of injustice will haunt you in so many ways, for so many days.  The lack of adequate, appropriate supports, the barriers and boundaries that seem insurmountable, the arbitrary and irrelevant rules and regulations, they are a constant companion in the lives of moms of adults with developmental disabilities…..unchanged from when their children were younger.  The only recourse is to have faith that things will get better, to hope desperately that we do not look back on these days as the “good old days”, and to refrain from dwelling on the inevitable years when mom’s love and support has diminished or departed.

But, before you go down that particularly scary rabbit hole, talk to another mom about the wonderful teachers, amazing caregivers, thoughtful friends and family and neighbors that have woven their goodness through the years.  Talk to them about the special people who choose to work in the world of special needs. It’s easy to get weighed down by the reality of the big picture and lose perspective about the moments and miracles of beneficence that often surround our children.  They are enough to warm a mother’s heart.  They are enough to sustain us and help us grow in the wisdom we need to see this journey through, and perhaps, to share it with others along the way.

 

Dedicated to the incredible moms who have shared their wisdom with me over the last thirty-two years.  Your generosity, warmth, and humor have sustained me and made what often seemed impossible possible. My life, Lauren’s life, is better because of you. 

 

Happy Mother’s Day,

Gail Frizzell