Inspiration from special needs parents and more:
These parents of children and young adults with disabilities were asked what they might have told themselves the day their child was diagnosed. This video is beautiful and full of support and love.
Welcome to Holland: A great poem for new parents of special needs children.
The Special Mother by Erma Bombeck *not a special needs parent but lovely nonetheless
Please take a look at this beautiful poem called “You Are Blessed” by Terri Mauro who writes the About.com Children with Special Needs Guide. She has created an entire gallery of “Love Notes for Special Parents”.
Moms, need a lift? This mega blogger, writer, long-time magazine editor and mom of two (one of whom has CP), tells us why we are amazing in her article, “Top 20 Reasons Why Moms of Kids with Special Needs ROCK”.
Here is an article listing 50 life lessons written by columnist and author Regina Brett. It’s a wonderful piece!
“15 reasons why it’s hard to get along with special needs parents”: This is fantastic! It’s not so funny while we are living it (well sometimes I have laughed at the absurdity of it all), but reading about it made me laugh:
“There are times during this journey that are so challenging and you may feel lost and discouraged. These are times when “showing up” for the day and having an open mind and a prayer on your breath are the best tools you have to work with. It’s very humbling and most of us parents have been there. May love and hope hold you until this time passes.”
-Michele Shusterman, mother of Maya, Founder of CP Daily Living
“Contrary to what some might say, we’re not given what we can handle. We’re opening to handle what we’re given.”-Elizabeth Aquino, blogger at “a moon, worn as if it had been a shell”
“They [your child with special needs] will find and show you what they are going to be excited and passionate and joyful about. And your job is to take a machete and carve the path in front of them. Find out what they love to do and carve it and let them experience all of the world.”-Actress Laura San Giacomo, mother to a teenage son with CP
“I often remind myself that despite my tangential feelings about Maya’s challenges, it is ultimately her body and she is the one having to integrate all of the physical and emotional pieces of having CP. I realized a couple of years ago that this was an important distinction for me to make as a parent. Sure I can grieve and have my own feelings about her challenges, but in my opinion Maya has the ultimate challenge. I can only be a guide and support to her in the best way I know how. I think the strengths essential for coping with this journey whether they come from the life experience of a parent or the innocent and unspoiled perspective of a child are different and essential to helping the child learn to cope. Often I feel Maya’s perspective of not having lived life any other way helps her to cope in ways I have not considered. It keeps her more focused on where she is in her capabilities instead of having that perpetual extra layer of comparison that is so deeply ingrained in adults. Sure, children gravitate to comparisons as well, and she may move more toward this later, but she reminds ME that for now she is aware of what others can do but doesn’t dwell on it the way I do. Ironically we help each other, so that she can keep moving toward her greatest possible potentials whatever they may be.”-Michele, Founder of CP Daily Living
“With tremendous burdens often come enormous gifts. The trick is to identify the gifts, and glory in them.”-Dr. Maya Shetreat-Klein
“Of course my education has been uniquely difficult – no one apart from Chickenshed believed that I was anything more than the label “cerebral palsy” – I was even described to my family as a vegetable. Who in this world would feel that they need to educate someone like me? This has held me back. If people had believed in me before we found Chickenshed then I don’t know what mountains I would have been able to climb.” -Paula Rees, writer, producer and performer with a degree in inclusive performing arts. She was born with hydrocephalus and cerebral palsy and is a writer in residence at the Chickenshed Theatre in London.
“Everyone goes through pain…whether it be emotional or physical. Whether or not you let that consume you, is what makes you a sufferer of pain.” -Dartania Emery, adult with CP
The following is a conversation Michael Kutcher recalled on the basketball court between then young brothers Michael and Chris (Ashton) Kutcher. Michael Kutcher has CP and is on the Executive Board of RFTS:
“I said, ‘You know I can’t make that shot. It’s not fair.’ And Chris (Ashton) even at that age said, ‘You can do anything you want. I can’t make that shot for you. Mom’s not here; she can’t do it for you. It’s your challenge. Stop using your disability as a crutch. This is your obstacle.’” From the following article: http://www.twincities.com/ci_19885146
“Everyone has something rare and powerful to offer our society” -Aimee Mullins, a record-breaker at the 1996 Paralympic Games **Check out Aimee’s very powerful TED talk where she discusses “The Opportunity of Adversity”. She challenges the way many people think about and approach people with disabilities:
A father offers some sound and loving advice to the following questions:
What do you do or have you done when your child is not progressing in the way you had hoped? What are your coping strategies?
Do you push your child harder? Are you hard on yourself? Do you wait until the feelings pass? For those of you with children beyond the toddler years, which ones do you feel have benefitted your family the most? Where have you gotten stuck?
Here is his answer:
“Start with what you have… do you have a partner? do you have faith? The national divorce rate is currently around 50%. Add a disability to the mix and it shoots up to 80%. Your husband or wife can be one of your most important coping strategies of all. Let your child’s disability bring you closer together. Lean on each other. Rely on each other. When one doubts the other must encourage. When one is weak the other must be strong. My wife and will be married 19 years this October. Our incredible 14-year-old would not be the young man he is today without two loving, supportive parents. Marriage is tough. Parenting a child with a disability is tougher. But it’ll be tough beyond imagining for everyone concerned if we don’t embrace the commitment to make it work. Ben has surpassed everyone’s wildest dreams. He’s on the honor roll at school. He was just elected president of his 9th grade class. Yesterday he wowed the VP of our local CBS TV station with his presentation asking them to support the 5K for CP that he, his twin brother and 2 friends have organized. Offered him a job if he decides to go into TV! Our children may never be “normal” in the world’s eyes but they can be better than normal — they can be extraordinary. If you have faith, lean on God. Let your faith grow stronger in times of testing. Don Moen’s song “God will make a way” became our family’s theme song when we took Ben to St. Louis when he was 2 to have surgery on his spinal cord. I’m not going to lie to you — there will be times when you get discouraged and afraid for the future but don’t ever give up!” -David Juliano, father of 14 year old twins, one of whom has CP
“As humans we are in a constant state of evolution; making choices and building upon the knowledge and ideas we have at any given time. Forgive yourself for your mistakes, because making mistakes is a natural part of living.” -Michele, CP Daily Living
“For those who are honestly seeking an insight I’ll tell them it’s the hardest thing I ever thought I would do…but also the easiest and most joyful thing because I completely adore my little girl. I’ll say its painful and fearful and hugely demanding as well as amazing and rewarding and magical. I might tell them I have cried many more happy tears that I ever did tears of frustration or uncertainty.”-Sara Woodgate, mom of a child with cp, blogger at “Busy Chasing Butterflies”
“During times of great vulnerability and challenge, we are ironically called upon to access tremendous mental strength, hope and faith often against a tide of our own despair. It’s not easy to do this, but it is vital to our ability to support our forward momentum, lest we become swept up in our own darkness. When you can’t find your faith borrow someone else’s until you remember where you left your own.”
♥ Michele Shusterman, CP Daily Living
“Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that she is exactly the person she is supposed to be. And that, if you’re lucky, she just might be the teacher who turns you into the person you are supposed to be.”-The Water Giver
“Be curious, not judgmental.”-Walt Whitman
“As you allow yourself to grieve and let go of what pains you, allow your mind and heart begin to move to a place of acceptance. This will lead you to a more peaceful place within yourself where new solutions emerge that you couldn’t see before.” ♥ -Michele Shusterman, mother of Maya, founder of CP Daily Living
“Try to take each day as it comes. Every day is different. Let your son/daughter show you the way. She will find her way of doing so many things. She will never cease to amaze you along with turning you grey with worry .”-Julie, mother of child with cp
“We all have well worn mantras conscious and unconscious that drive our actions, the way we interpret communications and interactions with people, and influence how we treat ourselves. Some of these mantras may by very positive, but we all have some that cause us pain. Having a child with special needs brings about inner tension that may force us to examine and challenge our mantras. This is why I often refer to the process of accepting your child’s diagnosis and self-healing as going hand in hand. These aren’t easy emotional roads to travel, but if you hang in there and challenge some of the mantras that aren’t working for you anymore, you will begin to free yourself and some of your very valuable energy for new and supportive activities and relationships.” -Michele, CP Daily Living
“Aerodynamically, the bumble bee shouldn’t be able to fly, but the bumble bee doesn’t know it so it goes on flying anyway.” -Mary Kay Ash
“You can’t start the next chapter of your life if you keep re-reading the last one.”-author unknown
“We must let go of the life we had planned so as to have the life that is waiting for us”-Joseph Campbell
“Don’t let someone else’s words dictate your child’s future”-Michele Shusterman, CP Daily Living
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“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.’ . . . You must do the thing you think you cannot do.”
“In the beginning I didn’t cope. It’s only been in the last few months that I have learned to cope. Our daughter has only just turned three. She has a lovely and determined little spirit and I have focused on that to keep me going. Also to focus on what she can do right now not what we are missing out on…that will come…We are all the more determined to give her what she needs. We do what we can everyday and if we can’t then that’s ok. I used to beat myself up if I didn’t get everything done everyday. Then I was seeing results anyway so it’s not so bad if I have a day or two here and there without doing something. I had to start doing stuff for myself even if its only 30mins. I was in this angry place and I didn’t like it.”-Rachael Clarke, mother of a daughter with cp
“As humans we are all stewards of some sort of pain. How you manage your pain and the meaning you attribute to it influences your greater experience of life. It also affects how you approach other people.
What do you do with your pain? Do you hide it in the recesses of your heart and mind hoping it will never be discovered by yourself or another? Do you turn it into something creative and set it free? Do you internalize it and punish yourself further? Do you approach others harshly? Do you exercise it out of you? Do you transform it into something loving and offer it to another? All of the above?
What pains you and why? Be gentle with yourself. Be gentle with others. Be willing to discover life, love and freedom beyond your pain even if you don’t know how to get there. Some of the greatest blessings brought to this earth have emerged through people moving through and seeing through their pain, and working to ease the pain of another in a similar situation.” -Michele, CP Daily Living
“As we have gotten to know and understand Maya (alongside her disability) we have learned that she tests us like any other child. She makes it her business to try and tug at our heart strings just to see what can happen. We would be in big trouble now if we had let that pouty lip of hers determine what she could and couldn’t do.”-Michele Shusterman, mother of Maya, founder CP Daily Living
“It can be one of parents’ most difficult jobs to walk the fine line between giving in to their children’s whims and punishing them for what are basically healthy attempts to discover who they are.”-Mister Rogers
“If your child’s Teacher tells you, “Your child doesn’t belong in my class,” it’s time to find a new placement. It’s time to find a new placement not because your child doesn’t belong but because your child deserves better.”-Doug Goldberg, Special Education Advisor website
A wise friend and caregiver to twins with CP has often told me:”Parents of children with special needs have special needs too!” Parents of children with special needs who have conditions such as cerebral palsy often feel socially and emotionally isolated (as do their children). The reasons can range from lack of inclusive programming and support within their communities, exhaustion from the their daily routine and lack of sleep, and feelings that other people don’t or won’t understand them or their child. -Michele, Founder of CP Daily Living
“I compare my situation to the airplane theory, when crashing you(the parent) put YOUR airmask on first, and THEN on your child… I had put her needs in front of mine for sooooo long that now, I cannot handle the wind blowing the wrong way. Finally realized how important I am to the whole picture, and without me, she would crumple. She needs her mama, main caregiver, to be healthy and strong! Thats my main focus other than her right now!”-Rachel Medina, mother of child with CP
I was exercising this morning and working very hard. At one point my frustration from not being able to move my body they way I wanted turned into a rush of tears. It definitely wasn’t just about exercising. It was about Maya. How did this happen?
So my message is to be easy with yourselves and be sure you give yourself time and space to embrace your feelings. Once you meet and accept them, they often leave you alone. -Michele, CP Daily Living
I am definitely guilty of fixing! For me it was like one of the steps of grieving after the initial diagnosis. Denial – check. Anger – check. Complete obsession to fix – check. But as the years go by and acceptance and comfort creep in, those emotions don’t visit as often. I see what a rich life we have and how truly we’re blessed. But it’s taken years and lots of crying, talking, and research to get to this point and I know I’ve still got a long way to go! But I think where you are in the ‘journey’ can help with practicing connecting vs. fixing. I don’t think I would have had a chance of understanding it 3 yrs ago -Jen Stewart on moving toward a place beyond hoping to “fix” your child. This is a concept presented by Anat Baniel in her book Kids Beyond Limits.
“May strength pour into your body, mind, and spirit, and in endless supply as you need it today. You are never alone no matter how alone you feel. As we move about our busy lives and people appear seemingly distant and disconnected from us and our experience, know that as humans we all carry pain in various forms. Occasionally a word or act of kindness to another connects people in a moment of love that lifts you both beyond your individual pain long beyond that brief exchange.”-Michele Shusterman, CP Daily Living
“Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.”-Fred Rogers, The World According to Mister Rogers: Important Things to Remember
“The reason we struggle with insecurity is because we compare our behind-the-scenes with everyone else’s highlight reel.”-Steve Furtick
“Life is like riding a bicycle, in order to keep your balance you have to keep moving.”-Albert Einstein
“Sometimes it seems too hard. Sometimes I wonder if I can do it. Therapy for years to come. How does anyone survive it? Then in a quiet moment of contentment, my son cradles my face with his tiny hands, looks deeply into my eyes, and gently kisses me. It’s more than words could ever say.”-Beatrice Song mother, OT, and blogger, A Stroke of OT
“Take a big breath and have a good cry. I have found that going somewhere away from people and screaming at the top of my lungs works well too! We all feel like that sometimes.”-Joni, mother of a child with CP
“Failure is not an option. I know parents, it’s easy to do everything for your child but they have to try and try again…..Steven Wampler **Steve is an extraordinary and inspiring adult with CP. Read more about him here: http://stephenwampler.blogspot.com/
“A person without a sense of humor is like a wagon without springs. It’s jolted by every pebble on the road.”-Henry Ward Beecher
“When you find yourself in a dark state of mind perhaps recall a time when you genuinely reached out and offered words of support or encouragement to someone you cared about. If those words came from a place of truth within you then you can connect with them again within yourself. Even if you can’t feel or think with hope right now know that it lived within you before and it can live there again. Feed that place where hope once lived until it takes root and grows again.”-Michele Shusterman, mother of Maya, founder CP Daily Living
“Placing one foot in front of the other, I’ve climbed to higher lengths. Reaching beyond my own limitations, to show my inner strength. No obstacle too hard, for this warrior to overcome. I’m just a man on a mission, to prove my disability hasn’t won.”-Robert M. Hensel
“As caregivers many of us easily become so consumed supporting our children that we neglect our own needs. It’s important for own health and well-being to set aside some time to regularly check in with ourselves, and to pay attention to our own physical, psychological and spiritual needs. One way you can support your own well being is by setting goals (even small ones) for yourself.
Setting goals and being able to achieve them, can help us revitalize our energy and feel empowered outside of our caregiving roles. I have found running helps me to do this, but for you it may be something entirely different. Don’t look upon this suggestion as one more thing you need to do that you don’t have time for. Consider this as a way for you to find MORE energy and joy in your life that you can give to yourself and ultimately the person you are caring for.” -Michele, Founder, CP Daily Living
The greatest repellant I have found to the unkind words and actions of others is deep self-acceptance. The challenge is doing the inner work to get there. And, as humans, we will spend our lives working on this puzzle in one form or another. -Michele, CP Daily Living
“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, “I lived through this horror. I can take the next thing that comes along.” . . . You must do the thing you think you cannot do.”
“Don’t ever do it alone darl. I feel ur pain and all of your emotions. Don’t shut them out but don’t let them consume u either. We all have bad days and that makes us human darl. Our daughter is 3 and wants 2 try so hard. I struggled for a long time with everything. Then with some help I realised I was consuming myself in the negatives instead of focusing on her being a little girl.”-Rachael Clarke, mother of a daughter with CP
“Some of us face periods of grief when our internal supports seemingly collapse, when we are more vulnerable to the tremors of life that shake our emotional world about our children. These are times when well-worn mantras may prove fruitless against the tidal waves of emotion that keep washing through our psyches and hearts. I have experienced this. During these times my mind often races, flipping through the catalogue of my life history hoping to find the words to help me move beyond these feelings. Often, I have found it helpful to engage my mind in other tasks, observe my feelings, and then release them so that they pass. I look for humor in each day, so that I don’t take the darkness too seriously. Just like all other waste that must leave our bodies, so must our psyches cleanse themselves.”-Michele Shusterman, Founder CP Daily Living
“Life is like a camera…focus on what is important, capture the good times, develop from the negatives, and if things don’t work out take another shot.” -author unknown