December 12, 2019
So please read this knowing that I am stepping tenderly here and this advice is coming with the best of intentions after years of walking this road and still stumbling often.
It will teach you so much about who you are, both the strength and empathy that you never knew you had and the limitations or weaknesses you never knew were there. This journey has been such a humbling one for me. I continue to learn daily from my daughter who is an exceptional teacher. I hope that some of what I’ve learned can help others.
There are so many things we Special Parents need to know that aren't found in the textbooks, the doctor's reports or IEPs. Here are the top 5 things (in my opinion) I think moms and dads of special needs kids should know...Feel free to add your own in the comments sections!
Many of the choices you are forced to make have no right answer. As a parent your job is to do your best ...and you won’t always get it right no matter how many sleepless nights you spend agonizing over how to handle a situation. You are going to need to learn to forgive yourself. When (not if) you screw things up despite the very best of intentions, no amount of beating yourself up will change things and it's not going to help you to make better choices next time. Remember many of the toughest decisions have no right answer.
Sorry, you're not going to need a cape....not even close. You are still going to lose your patience and raise your voice. There will be times when you'll feel like you are at the end of your rope. My truth: I'm a yeller. I don't mean to be- but I'm just loud. The more frustrated I get, the louder I become. Also, social media is a great filter for our "truths"... I promise my house is not always clean, there's usually one time every week I rewash a load of clothes because I forgot about the load I was washing until I go to wash another and sometimes we eat mac 'n' cheese from a box for dinner. It's okay. Special needs kids or not- those things are normal. Don't compare yourself, your child, your journey to Instagram. Most of it is a crock.
This will help you keep things in perspective. There are certain things that tend to get under my skin and if I'm not careful, I can become overly sensitive. People will say things that are not nice; however, try to remember that most folks aren't trying to offend or upset you. (For example - a friend lovingly said to me when my daughter was younger: "It must be so hard to be Kinsey's mom: I don't know if I could do it." Her intent was to be helpful. It wasn't.) There are certain words & phrases I hear that I wish people would stop using. I can almost bet the dimwits that still use them don't really mean to be offensive to my daughter personally, they just don't have a clue.
Thankfully, usually not all at the same time. It can be lonely parenting a special needs child. I can recall feeling like an outsider around moms of typical kids. When you're surrounded by a world of mom/daughter shopping trips, mani-pedis and first dates it's easy to feel like you have nothing in common with anyone else.
It's a hard thing to admit, but if I'm totally honest, I've felt jealous, too, which, in turn, makes me feel guilty.
Sometimes truths are hard, ugly things that we just have to figure out how to get through.
My apologies if my transparency makes me seem shallow or less likable.
I worry about my daughter's future- whether she will ever live independently, find true love, or a best friend. I'm fearful of the hurts she has yet to experience because she is “different”. I wonder what will happen when I'm no longer around to provide a safe haven for her.
*Side note- if you ask parents of most any other child (special needs or otherwise) you will find you probably share a lot of the same fears.
You really aren't alone. Over 14% of the children in the United States are classified as having special needs. Don't be afraid to reach out for help.
Don’t let "them" tell you what your kid can or can’t accomplish. Give your child the tools and all the love and understanding you can muster and sit back and see what happens. Don’t give up. Believe in them.
Help build up their confidence.
Be patient with them, and love them fiercely.
While we might celebrate different milestones than other parents, the moments are just as precious to us. There's much more to celebrate, laugh over and learn than you ever imagined. There's a special joy in this journey only a special needs parent can know and with that, I can promise you and your kiddo will be just fine.
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February 08, 2020