This is a letter many special needs parents might want to send due to the changes brought by COVID-19, but don’t have the time or energy to do so…
It’s been a long nine months and I want to share some perspective.
During a typical school year, we special needs parents and families struggle. We wonder if we are getting it right. We worry if we are getting our children the right amount of support, too much support, or even if our kids are going to make it without us one day. We worry about dying. We handle our special needs trusts earlier than most families with typical children because, if we die, our kids might not cope. It is life or death for some and our kids depend on us for everything. Their future and independence are not guaranteed.
I happen to have a child with milder challenges but it’s still a different kind of educational journey because we have to fight just to get to ground zero. Let me make one thing very clear: I never want special treatment. I want my child to have access to a free and appropriate education. That means he needs support just to even the playing field. We also happen to be living in a difficult time. Now, our kids have bigger challenges because they have lost all of their necessary support to access the curriculum. No crutches for you and now you must learn to type with your toes blindfolded!
For kids with significant challenges, they have lost their world. They have regressed in skills that took months or years to develop. You never want to see a child go backwards, but especially a child who is already behind. A child already delayed is under water gasping for air. That is what it feels like to be that child’s parent too. Gasping, grabbing, fighting for your life. “Help me,” you scream but no one hears you.
Changes brought to parenting by Covid-19
This whole COVID-19 thing has kind of changed things, right? I laugh a little when I see typical parents struggling because I have always struggled since the first day I became a mother and now many more mothers understand what I’ve been screaming about forever. I don’t laugh because I want them to suffer of course, I laugh because they finally see me. The light has turned on and now there is compassion where there was once judgement.
As a former educator from Los Angeles, I can confidently say: none of our kids are getting what they need to thrive. And now we all feel it. It’s not just a special needs thing anymore. It’s an everyone thing.
That in some ways brings awareness to what it’s like to be part of the special needs community. That means that people are more empathic of others with learning needs. That is a good thing so let’s celebrate that for a moment. Let’s celebrate that we can now see perspectives that are not our own. In this heightened political climate, I wish for more of that daily as we watch our leaders fighting it out in absolutely cruel displays of power.
I transformed when I became a special needs mother. I immediately realized I was not very sensitive, not very kind, and not very wise when it came to my opinions. In short, I had no clue what I was talking about. Yet I believed I did.
You don’t really know until you become a special needs parent though. And that’s this ironic thing that happens when you actually care for a special needs child. Your opinions and beliefs and all that information you thought you knew, blows away with your new stacks of paperwork. You don’t know until you’ve cared for a special needs child for a month, a year, or a decade.
Don’t judge special needs parents
Unless you live with, care for and are responsible for a special needs child, please don’t judge us. Don’t call us “crazy moms,” “out there” or any other name. Don’t judge us because we are tired and overwhelmed and burned out from this constant parenting during a ludicrous time.
We were burned out before COVID-19. Like barely crawling across the finish line each day. Actually some of us special needs families were not even doing that. We were physically sick, mentally beat, late to work, late to school, unorganized, dirty, tired, cranky, and much, much worse even before this happened. When this happened, it was our worst nightmare. Why? Because the only time we got to recover from the demands of special needs mothering, modeling, cleaning, cooking, teaching, planning, IEPing, calling, emailing, begging for services and support is when our kids left each day for school. It was only during that time that we could sob our big tears alone in our bathtubs, or take a nap, or just mentally succumb to the failures we had faced. Or deal with grief. Grief that would arrive at our doorsteps at the most inconvenient time, sometimes when we were celebrating the success of someone we loved very much. That grief is real. I want people to know it exists and it matters. You have the right to grieve those feelings of loss anytime you need to. It is a great time to do it when your child is not there. But now your child is always there! So what happens to our grief when we need to express it? When do we get to let those feelings out? Never for most of us.
COVID-19, for most people, sent parents over the edge. Special needs parents were now in an impossible position, hanging upside down and praying someone would catch us! After nine long months, three summers long, we just hope and pray someone will show kindness to our families by letting us have the services we need to survive.
Please know that we special parents understand that no one wants to work in these uncertain times. No one wants to get sick. We definitely don’t want our kids to get sick. Our kids would NOT do well in a hospital. We do not want COVID-19 or any other illness. We pray for no cavities, no colds, no flu and no anything. We are not naive about the seriousness of this illness especially for certain individuals.
But sanity is priceless too. If we are not sane, we can’t make good decisions for our kids. We can’t decide on services they get to keep or give away to some other hungry family. We need to be sane so we can sit with you at that IEP and breathe through all that is being decided about our child’s future. Please be kind to us as we struggle. Please show grace to our kids and our families.
When you feel compelled to judge us, please remember that most of us would never choose a challenging road like this for our families. We go to war for our kids to give them a fighting chance at survival! And we do it day after day because of our intense love for our beautiful babies. They are our world and we have to find a way to make the world love them back.
My son asked me recently: “Mom, what does survival of the fittest mean?” I told him: “That means we gotta be tough and only the strong and the tough survive. We are tough and we are going to survive.” He liked that.
If you are part of that support which helps us survive, I want to thank you for being on that cliff and reaching out your hand to us from time to time.
Sincerely,
The Perfectly Out of Order
Special Needs Mom
