by Rory Hunter, Founding Board Member of WABT
Life can be overwhelming. Balancing and juggling everything on your plate can seem like an impossible task at times. An overwhelming feeling can lead to stress, anxiety, fear and a sense of paralysis, like being frozen in place and unable to string thoughts or actions together, much less think coherently or rationally. Overwhelmed is defined as being buried or drowned under a huge mass, to be completely defeated.
I have lived with and through some overwhelming situations in my own life: the cancer diagnosis of an infant child, his subsequent neurologic issues and special needs, and my husband’s battle with brain cancer and his death, leaving me a widow with three young children at the age of 41. Yet, I have survived to tell the tale. Here are five tips I have used when dealing with life trying to bury and drown me.
Yes, I know it is a bit cliché and overused when people say to “just breathe” during difficult situations, but I am not referring to a stubbed toe or a bad grade. I am talking about the point when you literally cannot breathe because the situation you are in has paralyzed you so completely, your mind has gone blank and your fight or flight reflexes have left your body. I can remember two times in my life when my blood ran cold, I heard ringing in my ears and my body was in shock not from what was happening to me, but as a physical response to a situation I was in or news I was given. The only thing I could control and concentrate on in that instant was my breath. According to a paper published in Science, researchers led by Mark Krasnow, a professor of biochemistry at Stanford University, have been studying the effect of breathing patterns on a group of neurons in the brain stem. Their findings state that “this liaison to the rest of the brain means that if we can slow breathing down, as we can do by deep breathing or slow controlled breaths, the idea would be that these neurons then don’t signal the arousal center, and don’t hyper-activate the brain. So you can calm your breathing and also calm your mind.”
When you can think of nothing else to do, sit and focus on your breath. My go-to breathing pattern, when I feel overwhelmed, which manifests itself in me as a pressure like a boulder sitting on my chest, is to do a 4 count square breath. I imagine tracing a square with my breath, and I breath 4 counts up one side, hold my breath 4 counts across the top side, exhale 4 counts down a side, and hold 4 counts across the bottom of the square. I repeat this pattern until I feel calm and the pressure has lessened. Another breathing pattern that others have used that seems helpful is the 4-7-8 breathing pattern. Inhale four counts, hold breath for 7 counts and exhale for 8 counts.
Inventory and prioritize:
I distinctly remember sitting in the surgery waiting room at UCLA Medical Center listening to the surgeon recap my husband’s brain surgery. When he said the words “stage 4 Glioblastoma Multiforme” and “6 months to a year to live” my brain immediately started taking inventory and categorizing things that were essential and nonessential in my life. Unfortunately, it usually takes a crisis to get our priorities straight. That PTA president position I had just committed to for the year instantly seemed irrelevant. The “to-do” list of home repairs could definitely wait. The multitude of activities, sports, classes had to be minimized. It was time to round the wagons and focus on family, treatments and survival. Nothing else mattered.
Practice the art of saying “No.” My grandmother always told me that I needed to use the word “No” more, but I felt a great sense of guilt whenever I told someone “No”. I felt like no one could do the job like I could, or that no one would step up to do it. Guess what? No one is a superwoman. There will be someone else who will say “Yes”, and it doesn’t matter if someone does it differently than you. Experiencing a crisis in your life forces you to practice the art of saying “No,” and it is unexpectedly freeing. I have found some very gracious ways of turning down a social engagement, volunteer opportunity or even a family obligation. Try some of these on for size…”Bummer, I wish I could but …” “That sounds awesome, unfortunately…” “I would have loved to, however…”
Ask and accept help:
I was raised to be strong, suck it up, and carry on. Don’t share your burdens, do not show vulnerability, and my goodness, never ask for help. What I have found both during my son’s cancer diagnosis and my husband’s is that there is beauty and strength in a supportive community. Think about how it makes you feel when you help someone. That warm, loving feeling you get when you have done a good deed for a fellow human. Receiving help is not only about you. When you open yourself up to receive help, you provide others the opportunity to give. It is not a sign of weakness to ask for or receive help. It is promoting the flow of love.
Accepting help has made me more empathetic and better equipped to care for others. During the early days of my son’s diagnosis, hospitalizations and treatments, a friend of the family had set up a meal train for us. Knowing that we were in a very emotionally and medically delicate stage, she placed a cooler outside our front door in which people had been instructed to leave food as to not disturb us. I used this same idea of a meal train cooler delivery system several years later when a young mother at our school suddenly lost her husband. The act of giving care is contagious. The more you receive the more you want to give to others.
Take one thing at a time:
During the past 7 years as a widow and the past 16 years as a mom of a child with special needs, I have spoken to, encouraged, and given support to many moms, wives, cancer patients, and widows. My message usually begins with “Take one day at a time, one moment at a time, one step at a time, and one breath at a time.” Don’t project into the future, try your best to stay in the present. Look at the task in front of you. Complete that task and then move on to the next one. Choose something that seems manageable and do that. If things get too overwhelming, just focus on taking one breath at a time (see #1). By doing this you keep yourself moving forward. You prevent yourself from getting stuck on the would haves, could haves, should haves and the what ifs.
Some people are motivated by a to-do list. If you are one of those people, bravo and keep checking off your list. I am not one of those people. A list gives me heart palpitations and increases the likelihood that I will freeze up and get nothing done. Instead, I make a game plan for the day and sometimes the week. For example, last week I knew I needed to get my paperwork organized and sent off to the accountant for taxes. So, I set aside Sunday afternoon in my schedule to get it done. Yes, it was on a mental “to do” list, but I didn’t have to look at it and get stressed out every day. I had planned on when I would tackle the task, which to me feels more manageable. I do the same with mundane tasks like laundry, grocery shopping, bill paying, etc. I have a scheduled time for each, so I know that I am only focusing on that task at the moment and not worrying about the million other things that need to get done.
Let go of what you cannot control:
My aforementioned and very wise grandmother had a favorite quote: “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.” Whether you have a particular faith or belief system or a general belief in the universe, utilize that spiritual outlet. I remember posting a comment on social media regarding a negative incident that happened during a charity walk, when my husband was in the middle of massive chemo and radiation treatments. A friend responded encouragingly that I should “release it into the universe.” I am not condoning the use of Facebook to vent our frustrations, but my friend's comment made me realize how liberating it was to release the feelings I had bottled up inside. There are so many things in life that we have no control over, yet we hold on to them and ruminate over them. These thoughts overwhelm us and add to our anxiety and stress.
Spending time in prayer or meditation provides that outlet to unburden my fears and worries that are out of my control. I can release them into the universe and practice replacing those thoughts with gratitude, refocusing my mind on the good and positive in my life. The practice of reframing your thoughts does not need to take up much time, but it does take persistence and habit to make it effective. I usually find that my best prayer time is in the shower or in the car, which some days are the only time I have to myself.
I love this quote from the book Rising Strong by Brene Brown: “We don’t have to do it alone. We were never meant to.” There is power, healing, and comfort in reaching out to God, a friend, or a community. Sometimes it is scary and difficult to be vulnerable. I hesitate to speak or write about my life experiences and the fact that life can be overwhelming, because putting my voice out into the universe is a risk. Yet, we may miss the profound love, strength and support that is a result when We Are Brave Together.
by Amy Groshell
Prior to becoming the parent of a special needs child, the word transition was neutral to me. Now, I don’t know any special needs parent (myself included) for whom the word transition doesn’t invoke a feeling of fear or panic. Transition, by its very definition, implies change. It helps me to see this change as an opportunity for growth. In nature, the growth of a seed to a plant requires it to be buried by the pressure of the soil or, in the case of hydroponics, red clay stone. Pressure is required for change. In times of transitions, another special needs mom always reminds me that “Change is your friend.” I hope this blog is an encouragement to those encountering transitions with their child to see them as an opportunity for growth.
My beautiful daughter Gentry, with profound autism, who also types to communicate, has taken me on many journeys of transition. To be honest, I think she has dragged me through them kicking and screaming. I remember being falsely diagnosed with Postpartum Depression. My journey for health advocacy began and I later found out that my true diagnosis was Graves Disease or hyperthyroidism. I had to transition from nursing my beautiful infant to giving her a bottle. Although still thrilled with her development, I was suddenly confronted with change again when she began a series of bizarre, repetitive behaviors, loss of language, development of severe sleep issues and hyperactive behavior. These were all transitions that were out of my control. No one I know would have chosen to experience any of these. Even though I can attest that personal growth came out of these uninvited transitions, the focus of this blog are the transitions we choose or deny.
In parenting a neurotypical child, transitions are more of a given but with a special needs child they can be delayed or even optional. I often say the relationship between a special needs child and their mother is symbiotic. It’s as if, mystically, the umbilical cord between them is never severed. After all, the child’s very existence often depends on their parent. This is especially true for a child who is medically fragile and/or doesn’t speak. Even with all necessity and good intentions, before we even know it, we have enabled a behavior (sleeping with your child, choosing his clothes and food, etc.) that was appropriate at 5 years old to continue until age 25. As your child becomes a pre-teen, teen, and young adult be mindful to assess what is as “normal” as possible for a child of their age. I am a firm believer that all children are due “rites of passage.” If you think about their normal child development or the development of their siblings, there are many such rites. There is soccer practice, dance, karate, sleepovers, boyfriend/ girlfriend relationships, getting their license, prom, graduation, going off to college, getting your first apartment, etc. Even though these rites of passage may be different for a child with special needs it is important for their personal growth that they go through such transitions. “Ido,” with the blog “Ido in Autismland” praised his parents for all their love and support but encouraged them to let him fail, because he realized it was a normal part of the human experience and it was a way he could learn and grow toward greater independence. Even being allowed to fail is a rite of passage and one we should not shelter our special needs child from.
Transition opportunities twenty years ago for inclusion were slim. Being a part of a social group or class was nearly impossible. Now there are both special needs groups and inclusionary opportunities. Early on in my journey I bought into the belief that my child was different and therefore needed specialized support apart from others her age. It wasn’t until my mentor, Marilyn Chadwick, said to me that the only prerequisite for inclusion was “breathing.” She isn’t a second class citizen. Despite her challenging behaviors, the world needs her diversity and this belief makes me a big fan of inclusion when possible, especially if it is the desire of the child. In general, I think it’s important to assume that every child wants what other children their age are exposed to. There is a term for this: “presumed competence.” It essentially means to treat persons with disabilities with the assumption that they have the same hopes, dreams and desires as you and I do. It’s no surprise to me that non-verbal individuals who learn to communicate quickly express their desire for relationships and for their intelligence to be known. A recent article, "'It’s a Spectrum' Doesn’t Mean What You Think", states commonly misconstrued believes about “low” and “high” functioning persons with autism. The author, an individual with Aspergers, states that often persons called low functioning desire greater independence while those deemed high functioning need a greater awareness of those around them for support. It is important to not make assumptions about the life they desire to live but to give the child with special needs a voice when it comes to life transitions.
Having founded a 24-7 residential group home for non-verbal persons with autism, I have had the opportunity to encounter many families inquiring about placement. Living outside the familial home is probably one of the scariest transitions of all for parents of special needs children. I would highly encourage parents to not just think of such an arrangement out of a fear arising from the question, “What would happen when I’m gone,” but out of the thought that your child desires independence just like any other individual their age. Holding on to the mindset that, as a parent, no one can care for your child like you do (while true) can block this valuable opportunity for growth in your child’s life. It’s normal in child development for children to transition from their parents’ care to the supervision and care of others. No special needs child ever loses their parents in the process! Often, in the process, the family realizes how discombobulated their lives were. Watching families make the decision to entrust the daily care of their children to others is one of the bravest acts I have ever witnessed. The result is often growth beyond comprehension and a new, more mature, relationship with their families.
While a 24/7 care may not be available or an appropriate option for your child, maybe there are other ways to forge paths toward greater independence. My oldest daughter has significant learning challenges and high anxiety. She has found greater independence living in a garage apartment on our property. I have a friend whose daughter lived in a condo with a former therapist. Recently, Jacksonville built a special needs community for those not needing 24/7 care but do require access to daytime supervision, activities, meal preparation, and transportation. If you find yourself in transition paralysis, seek counseling or ask a trusted friend or mentor for their feedback. You, your child, and your team can work together to see what is right for your unique situation.
Whatever transition you are facing, see it as an opportunity for growth for you and your child. Make them a part of the decision. When you face transitions boldly, head on, and stare them right in the face be prepared to watch your child soar. Above all, don’t forget, “Change is your friend.”
My Journey as a Special-Needs Mom
written by Abby Khou
It’s been only a year since my son Ethan was diagnosed with autism, and there is still a long journey ahead of us. As of now, he is in a preschool for kids with special needs at age 3. The path we’ve had to take started with a mourning of our ideal picture of what our child should be and the struggle to accept what his diagnosis would mean to our roles as parents. When we first began to see the autism “red flags” that my son exhibited, I was still in denial. I didn’t want to talk to anybody about it except my husband, and I was pushing everyone away and felt extremely isolated.
I would toggle between feeling hopeful and anxious. His doctor said, there are kids on the spectrum who outgrow their diagnosis. I saw the various options for early intervention, and out of the blue, when I couldn’t take the feeling of being alone anymore, I set up a meetup group for parents of kids with autism. A light seeped through the door that was slightly ajar for people to come in and share my experience. I met moms with children on the spectrum from ages 2-8, some of them yet to be diagnosed, and some of them having already undergone all kinds of therapy and early intervention. We had playdates with our kids, friendships were formed, and birthdays were celebrated. I joined communities of special-needs parents on Facebook, where I could learn from other parents’ experiences. I asked questions in my quest for services that my son could receive to better the quality of his life, and ours too! I also attended local support groups, including We Are Brave Together and the Parents Connection group in the Torrance Harbor Regional Center. I derived strength from these warrior mothers who fight for their children day-to-day, while still maintaining wholeness as individuals and thriving in their adult lives.
As I start 2020, I am filled with gratitude over the events of the past year. After a few months of coming to terms with Ethan’s autism, we took control to help propel him forward. We started physical therapy, occupational therapy, speech therapy at 19 months, then feeding therapy, ABA, and the Leaps and Bounds program at Pediatric Therapy Network at age 2. Currently at age 3, he is attending LAUNCH preschool. We are in awe of every bit of progress that he makes; from his first steps at 21 months, the first time he hummed, “Twinkle Twinkle Little Star,” his first spoken words at 28 months, good days in preschool when he made his OT proud, the first time he ate any new foods, and finally getting him off the bottle. The little successes were all preceded by a trail of frustration, failure, and fear – for every day we waited for Ethan to start walking, for every time he came short in his development as compared to typically developing kids, for every time he refused to eat something that I cooked for hours, and for every time he didn’t look whenever I would call out his name. The list is endless.
We must choose to enjoy the successes rather than weep about the failures. I have stopped looking at milestone charts and the age equivalent of his skill levels in OT and speech reports. I have gotten used to people asking why my son doesn’t speak yet or why he is not looking at them. We can only cheer him on as he meets each milestone, even if it takes him more time than others.
I mentioned fear; most of it is focused on fear of the future. Right now, we have it good – he is in the capable hands of the LAUNCH preschool staff, his ABA team, his feeding therapist and us, his doting parents. I ask myself sometimes, what happens when he starts kindergarten and goes to a regular school? How will he fare in an academic environment where most of the kids are typical? Will he ever develop normal speech? What happens when I am no longer around to take care of him? I think these are questions that all special-needs parents have asked themselves at one point or another. Each question leads to another, and there seems to be no answers! I have learned to take each day, one day at a time. We don’t know where we will be in 10 years, but we are doing everything we can to help Ethan with all that we have, and for now, that is enough.
At this period of my life, almost at the age of 40, I’ve worn many hats. Television writer. Starbucks barista. English professor. Social media manager. Public relations writer. Sister. Daughter. Friend. Wife. Mother. I would never have been able to guess that I would be wearing the hat of “autism parent” or “special-needs mom.” This journey has been unexpected, but now that I am in it, I cannot imagine it any other way. Becoming a special-needs mom has made me more resilient, courageous, patient, loving and open-minded to other people’s shortcomings. It has nurtured a desire in me to help special-needs kids as a Pediatric Occupational Therapist after I finish my education in a few years. It gave me a new sense of purpose and meaning. I am grateful for Ethan, and I truly love him no matter what.
They stopped me in my tracks.
Her words. About her son with autism.
“I just want to allow him the chance to become who he is...”
In almost 16 years, I have never thought of this. I have never dreamed of this. I have never pondered this. I have never wondered about this. About him. About my son Ryan in THIS way.
I manage him.
I supervise him.
I take care of him.
I protect him.
I watch him.
I schedule him.
I walk on eggshells so as not to set him off.
I keep him occupied and happy dare he get bored and become upset or obsessive about something.
I learn again and again what to say, what not to say, what to do, what not to do.
I have gained the finesse of living with him, his needs, his insatiable anxiety, his food drive.
I have a PhD in behavior management, it feels like at times. (Not that I am an expert or that I expertly roll out the techniques and strategies either!)
Have I ever thought to myself or out loud:
Who is Ryan Bradley Patay?
Who is he becoming?
Who is he supposed to be?
Who is he?
No. For all my depth and introspection and thinking and the touchy-feely woman and mother that I am…No.
Have I thought about this with my other two teenagers, my normal neuro-typical kids?
Kate, who is my middle-school 13-yr old, and my mini-adult, Luke who is 18?
OF COURSE I have.
Do I try to have deeper conversations with him? NO.
And yet, he asks deeper questions of me, of life, of God, of other people’s lives.
In fact, he asks 11,000 questions a day, by the way, EXHAUSTING ME to no end--but sometimes there are golden questions in there.
Do I ask about his wants?
About his dreams?
About his hopes?
Any talk about feelings and wants are somehow related to his needs, his meals, his anxieties, his egocentrism. Which still feels like the outside stuff. The Prader-Willi stuff. The Autistic stuff.
NOT Ryan The Human Being, created by God, with worth, beauty, and purpose. Not that Ryan.
Who is that Ryan?
Does he know?
Can he articulate it?
Is he longing for me, his mother, his first love, his blueprint, to ask him? Has he been waiting?
Is he waiting for someone to release him?
I think because of his rare, genetic disorder, and his cognitively impaired brain, I have sold him short. Maybe. Perhaps I have presumed incompetence in my sweet Ryan. He is highly verbal and social, yet, I don’t enter his deep world. I never thought about the fact he has a deep, deep world.
Written by Jessica Patay.
Be the artist
Of your crisis.
You can create something beautiful and lovely out of the hardship you have been dealt.
It may take time.
It may take tackling a lot of anger, tears, WHY ME?s and feeling completely overwhelmed.
It is not overnight.
It IS a matter of perspective.
It is a matter of not giving up or giving in to despair, denial, or depression.
It is also a choice.
But maybe you never knew you had a choice.
Because what was handed to you was NEVER your choice.
You can decide this day:
My child’s diagnosis or cancer or behaviors or struggles SUCK.
It sucks the life out of me.
It sucks the life out of my family.
AND YET—this is not the end of the story.
I own my story and I will choose to write the ending—even if the beginning was written for me in the ugliest vomit color sharpie pen.
I will choose to find the hidden treasures.
I will choose to find the blessings.
I will be transparent when I am absolutely at my wits end and cannot find the joy, the gifts, the gratitude; and I vow to seek help if I get stuck.
I decide every day.
I will create beauty out of the ashes of disappointment, loss, heartache, endless appointments, meetings, hospital visits, medicines and schedules.
Even if it starts out looking like a paint-by-number piece. At least I started.
I can rise up,
And reach out.
I CAN DO SOMETHING beautiful for someone else.
Ask the universe:
What am I called to do as a result of the crisis I have walked through? What have I learned? What do I have to offer?
And then just wait.
The whispers will come.
Until then, say every day:
I will be the artist of my crisis. I will paint something beautiful.
I choose this. I choose this today.
Because of Ryan…I follow a meal schedule, a supplement schedule, and a medication schedule for him.
Because of Ryan…I avoid restaurants and parties; and I must tone down any food-related holiday—which is every holiday, by the way.
Because of Ryan…I have a blue handicapped placard in my car. That I use at Target, with or without him, I confess. There have to be some perks to this journey.
Because of Ryan… I have to hide many things from him, like if his brother or sister ate out, if there are any upcoming events or plans.
Because of Ryan…I walk on eggshells, doing a fancy dance daily in an attempt to prevent triggers and tantrums.
Because of Ryan…I have taught my other kids to lie, lie and lie. “If Ryan asks where we were, don’t say we got Yummy Yogurt, say we ran errands. And hurry up and finish that before we get home dangit!”
Because of Ryan…I splinter apart the family, trying desperately to give my neuro-typical “NORMAL” other kids the attention they so desperately need and want and deserve.
Because of Ryan…I am not always the jovial, light-hearted, SUPER-FUN mom I thought I would be.
I’m SO SICK and TIRED of saying “because of Ryan I do this, we do this, I can’t do that, or we don’t do_(?)__ fill in the blank with a million things.
But is this really RYAN’S FAULT? Is it?
Or is it the fault of Prader-Willi syndrome, a rare disease, that took up residence in his genes 15 years ago?
This crazy, genetic disorder laid claim to Ryan’s brain and body and eating and behavior and anxiety and perspective and functioning and motor skills and speech and social abilities.
And it laid claim to my family’s life, too.
It’s not really Ryan, it’s Prader-Willi syndrome.
When the madness stops for a brief moment, I hear the whispers of my soul:
Because of Ryan…I have been given the gift of shifted priorities. That all that really matters in life is faith, family, and friends.
Because of Ryan…I have grown in tenacity, endurance, and perseverance. I run emotional marathons every month.
Because of Ryan…I have mastered the art of answering 29 questions in 10 minutes while driving down the freeway, and not losing my cool.
Because of Ryan…I have learned what crisis feels like and I have tremendous empathy for others going through crises.
Because of Ryan…I am recovering from the prison of perfectionism and all its false claims and nasty “shoulds.”
Because of Ryan…I have watched my husband rise up in super-human patience and love and support.
Because of Ryan…I have witnessed a maturity and responsibility in Luke and Kate as they cheer their brother on, AND, those times when they talk him down off the ledge of his horrible meltdowns.
Because of Ryan…my life is deeper and richer and filled with goodness-moments and sweetness-moments I never would have noticed nor appreciated. Like Ryan’s daily morning hugs with me. Or when he is genuinely grateful for new socks or spiral notebooks as if they were the best Christmas presents he ever received in his life. Or when he asks about a friend or family member recovering from surgery and reminds me to pray for them.
Because of Ryan…I struggle, I yell, I cuss, I cry and I grieve, and yet simultaneously, I am filled with more gratitude for this one wild and precious life that I was given.
AND----Because of Ryan…I have met the most amazing, kick-ass, brave, warrior-mamas that I call my friends.
Because of Ryan, We Are Brave Together was born.
Author’s Note: I wrote this piece, with permission, after a friend shared about how other moms were responding to her and her little girl. This piece is a compilation of stories told to me through the years and my own observations.
We are all in the trenches of this thing called Motherhood.
It is exhilarating AND exasperating.
It is enlightening AND exhausting.
It’s a JOY and it’s a privilege.
Yet, our beloved children are a little different from each other.
Your child’s hard-wiring is such that sitting still, keeping quiet, and following simple directions, rules and schedules, fit him or her like a glove.
Your child keeps their hands to themselves.
Your child seems to listen at first command. Or 2nd.
Your child can sit quietly during rug time.
Your child can wait patiently for his or her turn on the swing at school or the park.
But this is not my child’s luck. She was born with a different wiring and processing in her brain and body.
She has severe ADHD.
She struggles to sit still.
She struggles to keep her hands to herself.
She struggles to NOT be physically or verbally impulsive.
She is not happy or gloating about this behavior.
She does not feel good in her head and heart that things go awry with playmates, so much so that she is rejected constantly.
And I, as her mom, am rejected constantly.
I have been shamed countless times for my child’s “unacceptable behavior.”
I have been sneered at and yelled at: “Fix your child!”
You assume I am a bad parent.
You assume I do nothing about her bad choices or mistakes.
You assume I have my head in the sand and act helpless about her behavior.
You assume I am not sad and mortified to my core that my child hurt your child.
Little did you know, we have been working with therapists and behaviorists and doctors. We are trying to learn absolutely everything we can to help her.
She is only 7 years old, by the way.
You have labeled my child as BAD.
You have labeled me as BAD. That I am negligent of doing what is “supposed to be done” when children are not easily compliant or re-directed.
You other moms of Naturally Compliant Children look at us as PROBLEMS.
I have a heart.
I have feelings.
I think deeply.
I feel deeply.
And so does my daughter.
She is not a psychopath without remorse or emotions.
We feel the burning coals of shame you heap on us down to our bones.
We are alone and isolated. Because you never took the time to get a little closer. You feared my child would rub off on your child, and then your child would never get into Harvard.
My daughter desperately needs to practice her social skills in real time, with neuro-typical kids, not just manufactured time in her social skills group. But you will have nothing to do with her because she is a “bad kid,” “the hyper girl,” “the kid at school who always gets in trouble.”
What I would love for you to do is ask me to coffee. Get to know me.
Ask genuine, caring questions about me and my daughter because you see the struggle that is taking place.
And you have decided to lean in and care and have compassion.
I would love that. I crave that. I need connection as much as my daughter needs connection. Please see us as humans, as hearts, not issues.
Please. I beg you.
Mom Seeking Empathy and Understanding
We said he would catch up on all his milestones.
We said he would be able to do all the things that other kids do.
It would just be delayed, due to his “hypotonia” or low muscle tone. His poor, little weak hands would learn. His long, skinny fingers that did not naturally or easily handle fine motor tasks would get stronger.
And they did.
And they didn’t.
Ryan is almost 15 years old and he does not know how to tie his own sneakers.
This hit me hard the other day.
My brace-faced boy who is SO EXCITED to go to high school next year, who is growing so tall and so handsome, cannot tie his shoes.
Should I have hired an OT (occupational therapist) to work with him over and over on this years ago?
Should I have printed out each step in pictures and tried myself to work with Ryan?
Was I too lazy or too busy?
How did this slip by?
Shouldn’t he know how to do this BY NOW? Insert flogging and self-flagellating behavior…
Did I fail?
Did I fail him?
What do we do with REGRET?
What do we do with the woulda-shoulda-couldas of our lives as mothers?
1). I think first we acknowledge it. Say it out loud. Be aware.
2). Then ask ourselves: what is the lesson here? What can I learn through this?
3). Do something with it. Don’t let it just sit there, hanging over you. Can you do the thing you didn’t do?
Can you apologize to someone?
Can you apologize to yourself?
Make a decision.
As in: I didn’t teach Ryan how to tie his shoes and NOW I am going to.
4). Let it go. Choose to be grateful that you learned something through this and then leave it alone. Write it down on a piece of paper and then rip it up, toss in the circular file. Or burn it--preferably without children in sight. ;)
Regret is an appalling waste of energy, you can't build on it - it's only good for wallowing in.