We’re Not Special Parents

Special kids go to special parents.

I hate that cliché. I know it’s supposed to be a compliment, but I think this statement does more harm than good for the parents, the kids, and the special needs community as a whole.

First off, it’s flat out not true. Special needs kids are born to all kinds of parents, just like typical kids. There are many special needs parents who neglect or abandon their children, who don’t seek out therapies and specialists, or who decide things are too hard and make decisions about their child’s future based on their own fear rather than what’s best for their son or daughter. And you will find the exact same thing in parents with typical kids.

Second, this statement is incredibly discouraging to parents just starting the journey. Cause ya know what? We don’t feel (or want to be) special. We look at other moms on this journey and think “I’m not special like them. I can’t do this.” We aren’t seeing those other moms at the beginning of their journey when they were in shock and grief stricken. When they just wanted to run away and hide. When they yelled to God that this wasn’t fair and begged Him to make their child “normal”.  When part of them wondered if it might be easier if their child died. When many of them felt that their real child had already died. When every morning they would wake up only to have reality slam into their chest like the ceiling had just crashed down. When their face was always makeup free and tear stained. You can imagine how disheartening it can be to be compared with the moms that are past that stage who look at their children lovingly and say with full conviction that they love their child just the way they are. How can any parent in the midst of their grief think they will ever be “special” enough to love their child so unconditionally?

Third, it creates a mystique that only special parents can parent a special needs child.  That only those that are perfectly equipped with the perfect set of skills can effectively raise a child with special needs. And so parents that get a prenatal diagnosis or those that see special needs kids up for adoption, think “I can’t do that. I don’t have the right amount of (patience, money, courage, organization, whatever) to parent a child like that.” And so children wallow in orphanages because the parents of the world don’t think they can handle it like those “special” parents. And babies are aborted because mothers feel so much less than the special needs moms they see.

Special kids go to flawed parents. All special needs kids. Every single one of them has parents that are flawed in so many different ways. The reason it looks like they only go to special parents? It’s because the parents you see are the ones that accepted the challenge and ran with it and not the ones who abandoned the fight. And? Our children have made us better. They have made us grow and change in ways we never imagined. They have taught us more about life and love than any other experience in our lives. And they have shown us how incredibly privileged we are to be their parents. We are not martyrs, drudging through every day because we have to. We are not saints who somehow were gifted at birth with superhuman parenting abilities. We are regular people with strengths and weaknesses who love our children.

And if you are the type of parent that loves your children, you could do what we do. How do I know that? Because the love for your children will spur you on to do whatever you need to do to give them the best life possible.  If you had told me 19 months ago, that I would be proficient at sticking a plastic device into a hole in my daughter’s neck and trachea to allow her to breathe, I would have said there is NO way I could do that. And maybe my pre-Evie self wasn’t capable of doing it. But our love for her, our desire to see her breathe with ease, the memories of watching her struggle, and our desperate wish to have her home with us, made us into the kind of people that can do trach care on an infant.

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Don’t spread the lie that only parents special enough can love and care for a special needs child. It may seem like an innocuous phrase, but it reflects the bigger cultural view of these precious human beings: that they are a burden that only the best parents can love and care for. Don’t discourage those just starting the journey or plant seeds of doubt in those God may place on this path some day with their own special needs child. If you want something better to say, try, “You don’t have to be a special parent to love this special child, but loving them will transform you in ways you can’t imagine!” because that is the truth!

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75 thoughts on “We’re Not Special Parents

  1. Yes! Finally you have put into words what I have been trying to express for a long time.
    I am not a martyr. I am not a supermom. I am Amy. Mom to Pierce and Mason. I have strengths and weaknesses and I do indeed love my children.
    Thank you for writing and sharing this.

  2. I am not a special needs parent, I work in the special needs field and I love what I do and the individuals I work with. Thank you for sharing this perspective, I can’t wait to share this with others. I have several parents who think they are supposed to be the perfect special needs parents Although they have made mistakes with their “typical” children, they really beat themselves up for their imperfections with their special needs child. Your love for your daughter is such a beautiful thing. Thank you for sharing!

  3. I agree with Gillian and am blessed by your insight! You are spot on! None of us as parents ever know until our parenting days are over (which is a lifetime with our kids) what the end of the story is going to be and it’s all about God’s grace to any parent! No kid comes with an instruction manual! God bless you and all the rest of us parents!

  4. Very well put. Just as God qualifies those he calls to do what he has called them to do, we become special parents because of the children we have, including those without special needs.

    Thank you so much for putting this in the words so many of us wish we could say.

  5. Beautifully said! I am one of those moms who became a better mom and better person because the challenges of each of my children (“special needs” or not) stretched me far beyond my comfort zone.

  6. So well said!!!

    When we found out about my daughter’s limb differences in utero, my husband kept pulling up all of these inspirational stories about people born with limb differences that have gone on to do great things. I never wanted to check those out and he could not understand why – thinking I just wanted to wallow in my grief. I finally explained that 99% of the biographies started with “I would not be where I am today without my parents…amazing…wonderful…” – I felt like my daughter’s success in life was directly tied to my ability as a parent. The truth is, it is a journey, and we grow every day. Sure, I do a lot to help her (she is almost a year), but she also does a lot on her own. And we will continue learning and growing – as a family – together.

  7. you words hit home and are so true in the beginning you feel like everything is gone…. I have a son born with down syndrome he is 4 now…. he is the light of my day , hour, everything………. without him our world would be nothing !!!!!!! thank you so much for your words <3

  8. I have walked this journey since 1994, when my first child was born. I then had 3 typical children, and then my 5th child, born in 2004, had psychological special needs. I would say that it is so much easier to speak about this with other parents of special needs kids. The other phrase that hacks me off is “God only gives you what you can handle.” So, what? If I were weaker my kid would be healthy?

    Thank you for your amazing article and insight.

  9. Excellently written. Couldn’t agree more. As the mother of a child who suffered a stroke in utero, I remember that tear-stained, makeup-free phase you speak of, and I can’t count the number of times I lamented that God would choose ME and MY FAMILY to carry this burden. Now that I’m past that stage, I know it for what it is: BS spewed by people who mean well but know not what to say.

  10. So, so true in sooo many ways. I particularly liked the part where you share about the journey… the grief at the beginning and where it takes you.. it is unfair to think when starting that journey that we will all somehow end up feeling and being transformed by this. I greatly appreciate what you wrote and shared. Wishing you and your sweet girl many blessings. ~ Carrie Wysocki, fellow “special” Mom.

  11. You said it perfectly. I’ve often searched for those exact words. Our daughter has osteogenesis imperfecta, and people say “you must be an angel to have a baby with special needs” and I just laugh. We certainly aren’t angels! We love her, care for her, adore her, admire her and cherish her – but we are just humans. And there are plenty of families who have special needs kids who ARENT angels.

    http://www.nwfdailynews.com/local-news/air-force-lieutenant-colonel-arrested-for-child-abuse-1.58690

    http://www.nwfdailynews.com/local-news/niceville-woman-facing-felony-child-abuse-charges-1.52139

  12. AMEN ! My son is now 31 ! He has spastic quadriplegia , blind, and partially deaf. Of course the docs all said a home for kids like him would be the best thing . BUT the love and fighting spirit GOD gave to my husband and I were more than enough. Everyday we have with him Is truly a blessing. GOD will give parents the Grace and love they need to go on. To us he is not a person with special needs he is just our son ! Oh, he has two brothers and a sister. His sister and her husband both are special Ed teachers ! His younger brother teaches high school sciences , and his older brother works with my husband and helps us when needed with our son.! Trust me, when I say we all tend to look at the minute by minute things in our lives, GOD does not ! He see the whole picture ! Press on all you families with special kids, don’t give up. Your rewards are still to come, in ways you could never even imagined! My son would want me to end this with his Christmas list…. Huggies is all he wants ! And he says Go Bears !

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  14. Thank you I feel so much better. My little one is six months old. I thought God messed up giving me Tyler he has up syndrome. Thanks to you I know he gave me Ty so he could whip this family into shape.

  15. I know what you said is very true – but their are some – not all but some – parents of special children who are brave enough to stand up and tell the world what they think like you just did – That helps to calm fears, educate the non knowers and allow preconcieved notions to be dispelled. With that all being said – you are special – not because you have a special child and yes you are right that is not why you have your special child – You are special because God made you that way. Thank You for your honesty and bravery.

  16. As a fellow parent of a daughter with cystic fibrosis, epilepsy and developmental disabilities- I couldn’t agree more! You put it in words so much better than I ever could, thank you.

  17. Yes. Yes. Yes. My floors are dirty, the older daughter’s feeling neglected, we’re all tired and stressed out, and someone tells me I must have been selected by angels??? This is just the response. My baby is just my baby and I’m just her mom – but that’s enough.

  18. Wise words. Thank you for expressing in words what has been in my heart. Found the link to your blog from Noah’s Never Ending Rainbow on FB.

  19. Thank you for wiring this, I believe that u are right and I tell new moms with special needs that its a crock of s…t when people say that u were meant for this and in the beginibg it was like I died and couldn’t wake up, but now after our ruff start of nicu and oxygen and tubefeeding we are on our way and I’m better and she’s better now. So yes we can deal with this.

  20. As a Mom of a 22 year old son with Downs Syndrome I say you are right on. Reading that brought me back 22 years! Lots of tears & struggles, but so many more smiles!

  21. Thank you for these words. I felt the same sentiments when our son was first diagnosed with Angelman Syndrome. I sympathize with all of your feelings mentioned above. However, your above perceived image of a special needs mom (or dad) 5 or 10 years down the road may be similar to the perception of a non-special needs parent’s version of you. Although the grief and lack of confidence surely diminishes through the years, my heart still aches to know my son will not experience life the way most of us get to. There are still nights of weakness where I wonder if it’s worth it. There are still nights where my wife and I feel soooo inadequate. Days when my son is sick and doesn’t eat a single thing. Days when he rips up a favorite book that I left on the counter for only a few seconds.. or breaks a laptop that was sitting on the kitchen table in the time it take a quick bathroom break…. or waking up at 1:30 am when your son is ready to go for the day. I still catch myself saying to myself “it’s just not fair” at least weekly, if not daily.

    You do not get to see the “seasoned” parents in the trenches, just as the people at church, or your cousins, or a co-workers, or an acquaintances don’t get to see you in the day-to-day. They see the Facebook version of you. The see the at church version of you. The smiley version of you. The not totally-gonna-puke-at-putting-a-plastic-tube-into-your-child’s-throat version of you. In the very blog post that you posted to dispel the image of you being a perfect special needs parent – there is a picture of you looking like a perfect special needs parent.

    This being said, your feelings are valid, as seen in the comments above. Many, if not most special needs parents feel this way and we can all relate. I have and feel this way. I’m just trying to take a step back and put myself in their shoes. I’m guessing they mean well. Maybe we should all just say “Thanks” and keep putting on that angel parent smile. =)

  22. So beautifully stated. Thank you for bringing me back to the start of the journey and making me realize wow, I’ve transformed to that established parent who just looks at my son with adoration. I now say he is the best kept secret, because I can’t begin to explain how much he has taught me, how I have been transformed by this beautiful boy who is now 10. Best wishes on this path! One step at a time. My best advice – get some sleep and take all the help you are offered!

  23. Thank you for writing this. As a parent on a similar journey, I can say that my son was made in God’s image and he is a gift from God. Is the hand that God dealt me the one I dreamed of? No, but I will play that hand the best way I can to maximize my son’s chances at the best possible life. And his special needs make up his identity, and who am I (or anyone else) to wish for my son to be someone that he isn’t or wasn’t meant to be.
    We all have different battles presented to us in life; some more challenging than others, but none that we can’t overcome. I’m reminded of the story where a man talks with Jesus while reflecting on his life. Represented by two sets of footprints in the sand (Jesus’ and his), he notices the most difficult periods in his life only had one set of footprints in the sand. The man asks where Jesus was at those most difficult times, and Jesus replies by saying it was during those time that I carried you.

  24. As someone who does not have a SN child, I appreciated this post because when I read that SN children are given to special parents, then I some how feel inferior. I continue to pray for Evie and you and Ty.

  25. Thank you so much for sharing you thoughts and feelings of being the parent of not just a special needs child but a special child. All children are special and sent to us from God to make us better people in life. I am so sorry that someone had to steal your wonderful words and try to pass them as their own. Thank you for taking us into your life and sharing all the raw emotions!!!

  26. Beautifully put, Megan! We have been following your journey with Evie, and I admit I’ve thought more than once that you and Ty are just amazing. This is good to remember, though. As a friend of mine says, God gives you the grace to be the mommy you need to be. Hugs to you all!

  27. At last someone says it how it is! Thank you from the bottom of my heart, I really needed to read this at the moment and my friend shared a link on FB. It sucks that people can say such a rash comment and feel like they have ‘done some good’ – if someone had cancer and was told “only brave people get cancer” they’d probably get slap that person in the face! No different, just as life changing, terrifying and unpredictable. xxx

  28. this blog was brought to my attention through the craziness of the who wrote it first thing. I am the mother of a child with spina bifida, like the mother who claims to have written blog. There’s no doubt in my mind that you wrote it. compared to her writing and even spelling on Facebook, there’s no doubt that you’re the original author.
    I know that many people jumped to defend her and sent you nasty messages and comments and for that I am so sorry, I can only imagine how hurtful that must be and how disconcerting it would be to know that your words have been stolen.
    on the other hand, I want you to know that the message of the the blog has not been lost I found your words very touching and very true to the point. Thank youfor sharing your beautiful daughter and your experiences.

  29. Wonderfully written. You have a way with words! This touches on many of the thoughts and emotions I’ve had raising my severely disabled son. Thank you.

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  31. Every child is precious and a perfect gift from God. Only man defines the package they are born in as perfect or flawed. Thank you for expressing so eloquently what needed to be said.

  32. This was incredible! Thank you. I have had these thoughts so many times……with guilt. I love my Claire with all my heart. I had to stick that same type of plastic piece in her throat for more than 2 years and tube feed her for just as many. She is six and healthy now. You have truly made me feel supported and I support you!

  33. The reason people think ‘special kids go to special parents’ is because the crucible that creates parents is so much hotter when you have children with special needs. So it looks like that to people who don’t know better. I have worked with children and families for nearly 40 years in many different ways. A great deal of that time has been with families where there are children with a hugh variety of special needs. I also have my own children and grandchildren and they have taught me how to be a parent and a grandparent. They stretched me and moulded me. I am not the best parent in the world but my children and grandchildren made me a better person than I was BC (before children) because I love them enough to try. When you feel there is nothing left within you to give, you lift your game and give more, out of love for them.

  34. Megan, you are amazing :) What a gem! I always try to read and catch up on your sweet little one! The truth is “who couldn’t love that little girl?”… but you really are special, you always were ;)

  35. YES YES YES YES YES!!!!! So very very well said. It makes my skin crawl every time someone says that to me. Last person who said it to me, I asked them about the woman who murdered her child with autism – was she special like me? Gah, it’s so Pollyanna! You are spot on when you say that “Our children have made us better”. I say it all the time.

  36. Thank you for this lovely share :) There should be more sharing like this one, a true, heart-felt story…. that many of us can completely relate to!
    All the best for the future, and again, thanks!
    Audrey

  37. Reblogged this on Septo-Optic Dysplasia, My Normal and commented:
    I came across this post today, shared by another special needs mom who deals day in and day out with what my daughter and I deal with. Every special needs parent can agree with most of the sentiment, I am not a special mom just because I have a special needs child. I am a special mom because I love that same child, in the same way you take care of your child. Yes, I do make it look easy some days, but mostly that’s because you only see us on our good days. If it’s a bad day we stay home, we deal with it privately. I don’t want to deal with a complete and utter fugly meltdown in the middle of the store/holiday dinner/whatever. You see most of us “special parents” on the good days. When we ourselves hold it together and don’t lose it. We do make it look easy after awhile. But what most times you don’t see is the tears, the despair, the loneliness, the heartache, the grief, and every other negative emotion that we may deal with at any given time.

  38. I also hated hearing these words when my daughter was first diagnosed. And God doesn’t give you more than you can handle. I forced myself to go to a Christian retreat a few years later and one of the moms just dropped her special child off and left. I said see, why do people always say God only gives special children to special parents when that woman just dropped this precious child off and left him and she said that’s the devil.

  39. Beautifully said, thank you for writing this. At least once a day, I am consumed with a gnawing guilt feeling like I’m not paitent enough, not smart enough, not loving enough……just not ENOUGH of anything to care for my son in the way he deserves. It’s a good reminder that we are just regular poeple too. THank you!

  40. I am a special need person and everything u have written is exactly what I have felt through my journey but I just couldn’t find the right words to explain this to people but u have worded this perfectly x

    • We are special. By choice. God chooses who he thinks must be tessted. But free will decides. So you are special because God chose you and you chose life and responsability over abortion or denial. So at first all are special but then by choice only the ones who accept and deal with it in a suitable manner in terms of Gods will.

  41. Well said I to have a special needs daughter who is now 34 and the love of my life, she make me laugh daily her smile is so beautiful

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