When Hard Doesn’t Break – Special Needs Parents
Maybe your child has curly hair, or is slightly unique in some other tiny way. Small genetic blessings that somehow will turn to a source of pride. Over time. Maybe you think that parenting is hard, but your hard is a moment. Your hard is a glass of wine, some retail therapy, girl’s night out, and then you move on. Your hard breaks.
There’s nothing heartbreakingly extraordinary that impacts the way your child moves throughout their Mondays, or Fridays – the way they approach their school day, year to year. Just a kid, potentially a great kid, maybe even an A student, going about their life sometimes trying new and fun things, succeeding, sometimes failing…moving on, growing. Just a kid. No labels, letters, or scars.
Somewhere in an alternate universe not so far from you people wake up wondering if there’s anyone who will do anything kind today. They wonder if the transit bus equipped for wheelchairs will show up on time, or at all? They, we actually, wonder, not if, but who, will drop the ball this morning. There are Moms and Dads, some special needs parents, who wake up anticipating every day that someone will fail their child. I know too many of these parents. They are my friends. In real life and on line. Moms and Dads parenting kids whose needs are not met at school, whose friends are few and far between. Same children that sigh before school, or hide, or yell, knowing what to expect when they leave their safe house. Same children who go anyways, often to the schools your kids attend too. Some will get by trying to be invisible all day. A few have what they need, but many won’t.
Believe it or not there are some people who wake up expecting others not to be truthful or helpful, or honest, or kind. They drag themselves out of bed and move through the motions hoping nobody gives up, snaps, leaves school for good, or tries to quit at life. Entirely. Today. Maybe you see one at the gym and you wave. Maybe you think how lucky she gets to go to the gym in the middle of her work day. Must be nice. Necessity looks like this. A Mom racing into yoga late at lunch thinking who takes care of the kids when I am gone?
You can’t begin to know that when we pray, if we still do, we ask please just let them make it safely through to 18 or 19. We pray for strength to keep fighting until she is here. Then here. Maybe here. Slightly shifting goal posts all the time. We put feet on the floor picturing getting through just one day so often, that we can’t plan beyond tomorrow. One day at a time damages your eyesight so that you fail to see sucker punches coming.
Kids are resilient, you say. Sometimes that’s true for colds and flu bugs. Bullies, anxious thoughts, depression, neglect, chronic under servicing, misdiagnosis and a scarcity of compassion – much harder to bounce back from. These are the things that wear us all so thin we can barely recognize ourselves in the mirror anymore.
Jasmine pulls her hair out in clumps because her medication doesn’t work hard enough to help in math where fractions might as well be Greek. Sarah broke a bit when she, the only child with a disability, was also the only child cut from tryouts for basketball. The only thing she’s ever tried out for. Andrew comes home and slams his door and refuses to leave his room after school everyday. Becca eats all the time because birthparents couldn’t or didn’t feed her. Or she’s anxious? Or her stomach never registers full. Or it’s a compulsion. Jane hollers weird phrases out the window at quarter past each hour. If she does that the house won’t burn down. Broken thinking. Different thinking. Jack can’t get into a carseat without screaming because his parents used to leave him there for hours when they went out? Do you know? Do you care?
Did you know we dread field trips because they disrupt everyone’s limited ability to cope? Did you know that we cry a lot quietly, sometimes hiding in the bathroom or the closet? Do you know us?
Somewhere nearby there’s a different house with a different child. Maybe someone is struggling. Maybe someone is crying. Maybe they will be okay without any help or support or understanding from anyone else. Maybe. Maybe they’d really love a kind word, or a simple helpful gesture. Without a doubt, most certainly, special needs parents would love to have coffee or tea with someone who doesn’t lie. A hand squeeze, a hug. A dinner, a glass of wine, a shoulder or an ear…It’s possible that one thing could keep them going through the next crisis.
Robin (Masshole Mommy)
My youngest was just diagnosed with ADD and it’s going to make advocating for him a lot easier now that we have a diagnosis.
That’s true. Diagnosis makes a dramatic difference and is a protective factor. I hope your school is accommodating.
This must be so so hard, I had my own issues at school and I know my parents tried so hard to make it easy for me but it was anything but – I can’t imagine how having something like this on top would have made it feel. x
Happily my older daughter is in a high school that gets her and does well by her. My youngest still gets a bit of help at school but not nearly what she needs.
This is a good perspective and a wake up call! I can be as guilty as the next person and just not think about how hard it is for somebody else to do something that I can do so easily. I will try to stay a lot more aware of that.
As I moderate a moms group, I’m becoming more aware of parental struggles, and how alone some parents/families feel.
It is very helpful to get a diagnosis so we can assist our children better. But indeed so many things grind at us daily can be the make or break.
Thank you for sharing your inside.
Thank you for the kind reply!
Being a special needs parent can be a thankless job. It is so hard and you are subject to so many harsh judgments from people who don’t understand.
It’s exhausting sometimes for the entire family.
Everyone is different, but that doesn’t make anyone any less special or worthy. It is horrible that things fall through the cracks, that things get missed, that someone gets left out. It is hard to deal with from any child.
Posts like this really help me better understand what day-to-day life can be like as a special needs parent. There are so many more things you have to prepare for!
What a great topic for a post! more people need to be aware of the difficulties that go along with parenting a special needs child, it’s not easy, it’s exhausting! love that you wrote this to help spread the word and open the eyes of others so they might not judge!
I am the father of a 5-year old girl in the autism spectrum. I am also a HS English teacher. I didn’t understand “crazy” parents until I caught myself being that “crazy” parent. You never know what battles a person is fighting. Thanks.
That is very true Glenn!
Every child is unique and it can be a blessing or a struggle. However, kids will always be special.
Tanj from A Travelogue
This is such a touchy subject but kudos to you for speaking up! Its probably really really exhausting but worth it.
This reminds me to relax a little bit. To have patience with my kids a bit more. They are happy and healthy and I can’t take that for granted. A co-worker who sat next to me at work exposed me to the life of a special needs kid.
I had an incredible respect for him and his wife for simply maintaining their sanity.
This is a beautiful read and I hope it reaches more people. Thank you for sharing!
This kind of post is so important for those with and without special needs kids. It’s so hard to imagine what it’s like as I know it’s different for every parent
I cannot imagine how difficult it is for you some days. I have worked with kids with special needs for years and know how hard it can be on their parents. On day at a time, you’re doing a great job.
Wow, thank you for sharing this post. I have always said raising 5 kiddos is hard but we also have 4 of them that have different special needs. I was surprised to see the part about Jasmine because my daughter has done the same (Trichotalamania) and I don’t hear much about that anywhere.
Still trying to determine for my own reference if that is anxious behaviour or related to medication the child is on. It’s a hard symptom to deal with.
What a great topic and I hope it reaches more people. I will share this post with my friends too! Great post!!
Wow! Thanks for sharing this. It’s so important to be aware of our actions and surroundings and to be nicer to one another because you never know the struggles that someone is facing.
This is great perspective on an important subject. It’s easy to over look struggles that other families face on a daily basis.
Thanks for sharing your story. Special needs kiddos do need a customized care plan. I’ve volunteered with special needs kids and they are some of the sweetest people you will ever meet.