Today I want to send a big shout out to parents, grandparents and other caregivers of kids with special needs. If anyone ever needed a virtual hug, it’s you! Muah! (That is a kiss sound in computer language).
Nobody gets pregnant and says, “Gee, I hope I get a multi-handicapped baby that needs special services and all of my attention for the rest of my natural life.” Nobody imagines their child struggling to reach the most basic of milestones, like rolling over and sitting up. Nobody sits and daydreams about this impending child coming into the world and plans out speech therapy appointments, specialist appointments in Pittsburgh, and two hour long IEP meetings. Nobody.
Whether you find out that your child has a “diagnosis” during pregnancy, shortly after birth or when they are two, it is devastating. It rocks your world. It makes you question everything you thought you knew. Whether you realize it or not, every parent who finds themselves getting a “diagnosis” for a child goes through a grieving process. While the child has not died, many of the parents’ hopes and dreams have, at least for the time being. The transition involved in moving from “normal” child rearing to the process of “special needs” parenting is huge and not for the weak at heart.
Parents of special needs children sometimes find that they are required to be at home 24/7, and have to give up jobs (and income) when they weren’t expecting to. They may find themselves running from appointment to appointment, getting conflicting advice, and wondering if things are ever going to get better.
Parents of special needs kids sometimes find that their relationship with a partner has taken a backseat to this new set of responsibilities, and in fact, while approximately 50% of marriages in the United States end in divorce, approximately 80% of parent with kids who have special needs will eventually dissolve their union.
Parents find that they are constantly fighting for insurance coverage, for appointment times that best suit their schedule, for appointments that aren’t four months down the road, for goals in school and therapy that make sense….I have had parents tell me that they were NICE people until they had to start fighting for everything. I’m with you!
Parents of special needs children often find that their children do everything much later than those “normal” kids, and take twice as long to get there. While other parents are enjoying the freedom that comes from not having to feed their child, or not having to carry them inside from the car, your child is getting older, but still needs so much help.
Parents of special needs children have a hard time giving their other children equal time and how can you if the special needs child needs you every minute? These parents also usually find that their house is a train wreck. It’s pretty hard to be with one child constantly and still clean a toilet and do laundry. Spring house cleaning????? That should make you laugh out loud.
Parents of special needs kids very often find that their best friends have slowly slipped away…you don’t have time for them, and they can no longer “deal” with your issues or your child’s handicaps. It can get very lonely, and sometimes the parents of special needs kids start to wonder where their “old” self went, and who they are now, and what their real purpose is.
I’m not trying to depress you! Heavens no! I am trying to get across to you that despite the fact that I don’t live your life, I DO have at least some understanding of what you might be going through on any given day. Not only do I have some understanding, but so do all of your therapists, nurses, teachers, social workers, and the other host of people hovering at the edges of your life. We KNOW that your life is hard. What you may not know is that YOU are MY hero. I think of you parents the same way that I think about our servicemen and women –God Bless you for being in the trenches, duking it out every day and doing things that most of the rest of us don’t think that we are capable of.
I admire you tremendously. You have taken an unexpected situation that you were totally untrained for, and turned it into a love fest. Here’s what I have seen and experience in my 20 plus years of being a Speech Therapist. No matter how sick, no matter how challenged, no matter how thankless it sometimes is, you guys LOVE your children, wholeheartedly, with no reservations. Although you hope your child will soon achieve the next goals, your love for them is not dependent on it.
You are often so selfless. You do things you never thought that you would do and you master them! Six years ago you didn’t know what a Speech Pathologist was. Now you could practically be one! Sensory diet? No problem. Feeding issues-tacking it. You always put your child first, even if it means missing out on things for yourself.
I’ve mentioned just some of the challenges associated with having child with special needs. There are probably hundreds more. Now I want to remind you of the positives of having special needs kids. There are some bonuses too!
When a “normal” child hits a milestone, yeah it’s something, and mom usually calls a grandma to let them know. Milestones for the “normal” kids are expected and almost inevitable. But when your child hits a milestone, it’s a GREAT BIG HAIRY DEAL! It should be a party. This is the culmination of months or years of hard work, dedication, keeping appointments and providing praise & rewards. This “thrill” that you get when your child makes progress not only affects you, it gets your therapist, the people at the office and even the custodian of the building right smack in the heart. You and your child bring sooo many people sooo much joy. Did you know that? We are all rooting for your child and when something great happens, we feel like it’s a community thing. Therapists drive home, blasting tunes, boogying in their seat, and are so excited about the totally amazing day they had because of what your kid did. Your child brings other people joy, as do you, and reminds us all that compassion, love, patience, people, and relationships are what it is all about. Thank you for sharing your child with us!
Here’s another benefit: If you had not had this child, would you even know the people who are currently the most reliable, caring people in your life? Many parents of special needs kids find that their “friend list” has changed dramatically since the birth of this child. But, many also find that they have therapists, teachers, medical professionals and other parents that they are suddenly closer to than their own siblings. These people would not have come into your life at all if there hadn’t been a child with special needs.
Finally, I want to know that sometimes, people like me wish we could trade places with you. WHAT???? I can hear you now…”You want to still be working on potty training after a year? You want to watch your kid eat nothing but crackers for three days straight? You want to constantly tell your kid to “use your words?” Well, no. But..my fifteen year old (who I love with all of my heart) is now living with his dad 3 hours away from me. I dropped him off the day after Christmas with $1200 worth of gifts that I’m not sure he fully appreciated, and did not even so much as get text from him for 6 days. He’ll be getting out of school in an hour, and I don’t know if he’s going straight home, or is staying for weight training for football , or going to baseball practice. No clue. Don’t get me wrong, this kid loves me and thinks I’m a great mom. He just doesn’t need me anymore.
See, it turns out that all those “normal” kids get to an age and maturity level where they need their parents less and less. It turns out right now that I am a cash machine and a ride to wherever he wants to go next. There are not any more spontaneous public displays of affection. So, when people like me see your child plant a sloppy kiss on you, or come running from the therapy room to show you what they worked on, or grab your hand to walk to the car….yeah, I wish I could have those extra couple of years of my kid just being a kid, like many of you will get. Because special needs kids typically develop more slowly, your will likely get a few more years of hugs and kisses. Go ahead and look forward to your child achieving independence, but enjoy this time right now, because it’s gone before you know it.
I know that this has been a long post, but when I think about you parents, I seem to have an awful lot to say. Let me finish with this:
If you are the caregiver of a special needs child, give yourself a hug, a pat on the back, and some very nice, positive self talk today. You are a great parent, doing a great job, taking care of a great kid. You are admired and cared about by many people. Be kind to yourself today!!
Tracy
PS—in upcoming posts I will address “positive self talk,” considering a “mommy’s helper,” and some other simple, tried & true things to help parents cope with this sometimes difficult world of parenting a child with special needs.
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