Things No One Says About Parenting Special Needs Kids

The day that you give birth, they hand you this beautiful (ok, in my case not-so-beautiful) bundle of joy and a few days later, send you merrily on your way, they never tell you that this little creature might not grow up to be such a joy. You see it maybe, from day one, maybe a few days later or maybe months or years down the road, that this critter is different from the rest of the flock. Yeah, they tell you not to compare one child to another; every kid is different. “They”….they need to check their advice at the door because it all goes out the window when one of the flock isn’t falling in line as the rest do. You sit there on many a sleepless night reading books like “Go the Fuck to Sleep” and you ponder whether your should maybe write your own; variations on the theme of utter insanity. What would you call it? Would anyone read it? Sure it would be attention grabbing, but is it the kind of attention that you really want?

Oh hell, who cares what kind of attention it is, at this point, while failing miserably to easily slip into a bond only a mother and baby can have, you consider your options? Siberia? Too far. Honduras? Too many mosquitos. Iraq is looking pleasant but you decide to tuck tail and head for the safety of a locked bathroom; hot shower optional but highly recommended. And while the warm water is cascading over your puke caked body, washing chunks of God-only-knows-what out of your hair, you think to yourself, surely this can’t be my life??

 

It can be, and it is, and I’m here to tell you that parenting a bipolar (or any special needs kid) is not easy, not always fun, certainly not heartwarmingly glamorous. It’s tedious, often thankless and no one…NO ONE, but the people who are in your shoes, will ever truly understand. What other surprises are the neurotypical-child blessed parents hiding?

1. You know your child best from day one. This one is extremely important. icd9 code loving, PhD toting people LOVE to impose arbitrary age guidelines on when a child can be diagnosed with things. So? So what does that matter? You know your child is different regardless of whether or not there is a diagnosis, so as they say in EMS, treat the symptoms. Or is it turn the patient toward the other guy when he’s about to puke? Eh…either way, both good rules to live by. Quickly followed by, DON’T be afraid to be that parent. It is your God given right, as well as your duty do to right by your child. It’s not going to be easy, but there are things like early intervention and developmental pediatricians for a reason. Find them. Use them. Love them. Send them Christmas cookies.

2. Parenting a special needs kid of any sort can really f-ing suck! Lets not gloss over this simple fact. Parenting of ANY type, unless you’re June Cleaver, is never going to be all sunshine and rainbows, but parenting a special needs kids brings more dark days than any of us are really willing to admit. I’ve had my share of days where I plotted my escape to Siberia WHILE in the shower. – If I can just grab my passport while my husband is at work, book a ticket and pull out money on my way to the airport before he gets the text that something has happened on the bank account…I could be free and clear, I’ll pack light, just what I need for the trip, surely I can pull that off – and then all of a sudden someone is banging on the bathroom door and I’m violently snapped back to this reality, whereupon someone has spaghetti in their hair and the dog has chewed something to oblivion. Ugh…this life is not easy, don’t expect it to be, and don’t EVER feel guilty for wishing you had another one sometimes.tires

3. Speaking of guilt… I’m sure by now you’ve read the special needs boards and blogs about how super mom and wonder dad have all their finances in order, all the specialists set up, therapies in place and everything is hunky dory, oh and by the way, they’re also changing things in congress, helping pass bills and laws to support their kids education, raising funds for their school district and hosting an Alex’s lemonade stand in their spare time. They’re not as happy as they put on for the outside world. They may want people to think that, but please for the love of all that is good in this world, don’t compare yourselves to them! They may be happy doing what they’re doing, and that’s all well and good, but if all you can muster during the day is getting a load of laundry done and ensuring that everyone survives until bedtime, call it a win and move on. Good enough is sometimes as good as it’s going to get.

4. Finances also f-ing suck. Kids as a whole eat up more money than you can possibly imagine, but special needs kids eat up even more of that. Aside from the obvious, extra copays for umpteen doctors and therapists and all the special needs gadgets your child may or may not need, there are a lot of indirect, hidden expenses. You will inevitably need to pay for a babysitter that isn’t the run of the mill high school sophomore, yes, someone experienced that can handle your little ball of crazy. If you’re like mine, my cherub with bipolar, adhd and ODD….you’ll want two sitters. One for him and one for his older sister. My kids are like a nuclear warhead and a hellfire missile tried to have babies and failed miserably, and that’s on a good day. There can never be just one sitter, or if there is, said older child needs to find a friends house to hang out at for the evening.

5. Siblings get the shaft. I absolutely loved being a single mom to my now twelve year-old daughter. We did a lot of growing up together; we were buddies. But sadly, that is not as much the case anymore. I often imagined that my life with her would be far more Gilmore Girls-esque. Well, now I spend most of my time separating the two of them so that the police or child protective serves don’t show up at my door following all the commotion. It takes a HUGE toll on the “normal” sibling, believe me when I say this. Get that sibling counseling, purposefully make a weekly “date night” with that sibling, hell, put a lock on their door (one with a key’d entry) so they can have an escape for their own sanity (and at times safety). Try desperately to explain to them that they are loved immensely, but that unfortunately these were the cards that the family was dealt. Eventually one day it will get straightened out, but for now, please just try not to hate us all, least of all me, for creating the spawn of Satan.

6. Marriage gets the shaft. Take heed of all the above mentioned notes in #4! Hire a few sitters, gather up the pennies you have left at the end of the week and make a date night with your spouse too. This shit is hard and you will both need some time away. Also reference #3 and don’t feel guilty about it either!

7. Make time for yourself – yeah I’m lookin’ at you mom! You can’t do it all, and you are going to resent or even begin feeling like you may slightly hate your child. Gasp….insert all pitchfork throwing here. Yes, there are times you feel like you just wish that child wasn’t around. That thought is short lived however, and inevitably he or she will do something endearing and sweet and it will remind you how much you really do love them! Incidentally, if you are genuinely feeling as though you are a danger to yourself or you child, please seek professional help. I, wisely, at some point, decided to be medicated when I got to the point where I seriously dreaded getting out of bed and having to face another sucktastic day. The point being, rant, rave, yell obscenities into your closet while throwing shit around, call a friend and grab a cup of coffee (or something stronger), get a tattoo (pain, when done right, can be strangely cathartic), cry to your spouse, write in a journal or perhaps, take a trip to Siberia, but call me first if you do, it’s on my bucket list! You CAN NOT take care of others if you do not take care of yourself. Repeat that back to yourself as many times as you need to but keep it in mind when you’re on the verge of losing it.

Ok, so I’m not saying that everything about special needs parenting is awful. There are many rewarding moments; when your first grader FINALLY starts sounding out some words, the week when there are more advances toward the prize box than classroom restraints, siblings that can play Minecraft next to each other without killing each other…for five minutes or so. It happens, life happens. Sometimes days are totally crappy, other days the heavens open and you’re reminded that you too, can do this! If all else fails, call me and we’ll commiserate!

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Remember the old mantra, “this too, shall pass”. And while I guarantee that it won’t always feel like it’s passing quick enough, cherish the moments that you can, crazy as they are because childhood, no matter what kind, goes by entirely too fast!

3 thoughts on “Things No One Says About Parenting Special Needs Kids

  1. I don’t think parenting a special needs kidlet sucks. In fact, now that he is older, I never have to worry about him drinking and driving, doing drugs, or staying out late. He gives me the best hugs ever and tells me everyday “Thank you.” It will get better; you’ll see.

    • I didnt say it sucked all the time, but there are definitely times I’d like to run for the hills. I even said there are some great moments and at the end of the day I just love him…good or bad. The truth of the matter is, that with my little guy, we don’t know if it’s going to get better or much MUCH worse…just have to take it as it comes. My point in writing this is to put a voice to the feelings others may have but are too afraid to say. Some days suck, other days, not so much…it is what it is.

  2. As a mother of two special needs children, I am NOT afraid or ashamed to say is that there have never been any days like you describe. May God give you the grace to face each day with gratitude and love for your child.

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