Homage to Poems about Raising Special Needs Kids

Okay, here I go. I am about to offend a whole lot of people. I just have to say I’m sorry upfront and I hope you’ll forgive me. I’m headed into sacred territory. Coping territory. The place where good, caring people go to harvest sentiments to “make you feel better” about having a child that has some sort of special need.

One of the bloggy mommies that I read said it first. She just came out there bold and brassy and said it… “I despise the Holland poem.” GASP. You know the one… raising a special needs child is like getting on a plane expecting to go to Italy but you arrive in Holland, but Holland ain’t all that bad, it’s just different.

Well, I will see your Welcome to Holland poem, fellow blogger, and raise you the God Chooses Mom for Disabled Child article my Erma Bombeck. This is the one where God sees a really awesome woman with a lot of great qualities and says, “Let’s ‘bless’ her with a child who has a disability. It will teach her something amazing through it and she will envied and will be a saint herself because of it.” Hmmm. Isn’t that nice of God?

Next, another prose devoted to the character of our Heavenly Father: The God Said… poem. It my own words, I would say this is the series of the most frustrating answers to prayer I have ever seen. It’s like, “God will you… NO! If you would just… NO! I really need… NO! Could you please… NO!” Okay, glad I asked, I think.

Now, don’t get me wrong. There are some nuggets of truth in all of these sentiments and well-crafted poems. But, I might be going out on a limb to say that it makes people who aren’t going through the reality of raising a special needs kid feel better reading these than those who are. So, there is a rush to forward these links to your friend or family member to brighten their day. I’m inviting pushback here if I’m out of line. Maybe these do make you feel better.

Personally, I’m so thankful that I encountered these links though, along with some of the things that I have heard from very nice, well-meaning people in past two years. Things like: “God knew exactly what he was doing when he gave you Josiah as he is, because he knew you would be strong.” “You’re so creative, so God gave you a child with autism because he knew you would work really hard to play with him.” “Just think about what all God is going to teach you through this.” I found myself getting angry with God with each new phrase. How could he do this? If I was so good, and tried so hard to live for him, THIS was my reward? Not cool.

But, wrestling with all of this sent me on the most prized spiritual journey of my life. On December 12, 2008, I wrote this in my journal:

Here I am, Lord. I have some questions and I look to you for answers. I want to put aside any of my preconceived notions, my theology, religion, or advice from others, and I want to seek You for the answers. Straight up, what does your Word say?

> What do You say about healing–physical healing? Is it still for today?
> Do You allow bad things to happen to us to teach us a lesson?
> Do You bring sickness and disease to some people’s lives so You can use them for a greater purpose?
> What are the lies we tell ourselves about who You are and the place You have in our affairs?
> Do You withhold healing and help based on our level of faith and what we do?
> What are the blessings I’m entitled to as Your child?
> What does it take to get a miracle? Show me. I need healing for my precious son’s mind and body. How will it come?

I have devoted these past 8 months to studying God’s Word and listening to different sermons online addressing these questions. Scripture after scripture has re-energized my prayers, and has made me fall in love with Jesus all over again. Have I learned to be more patient? Sure. Have I learned a lot through suffering? Yep. Do I love my son and celebrate him more because of it? Certainly. Mostly, I’ve learned about God’s true character. I’ve been challenged not to put God in a box, and not to attribute things to him that are not in his nature. He is a good God, and he keeps prodding me on to hope, faith, and one day… victory.

I’ve said it before, and I’ll say it again. Either God’s Word is true, or he is a liar. He makes bold claims. “I am the Lord… I publicly proclaim bold promises. I do not whisper obscurities in some dark corner so no one can understand what I mean. And I did not tell the people… to ask me for something that I did not plan to give. I, the Lord, speak only what is true and right” (Is. 45:19).

What does he promise you? What does he plan to give you? Have you ever looked to see? Grabbing a nice Scripture verse once in a while for comfort is kind of like reading those poems I referenced earlier. It will give a short-term burst of consolation. But, God is not about simply consoling us. He is about saving, transforming, delivering, growing, directing, relating with, and loving, loving, loving us in the long-run. I challenge you to engage in your own journey to discover what he’s really like. I believe it will lead you into territory that looks more like hoping than coping.


21 Responses

  1. I agree. Without hope, we have nothing. That’s the only thing that’s kept me going. 🙂

    BTW, I’m going to add your blog to my autism blog list. 🙂 I’d love it if you did the same for mine. 🙂

  2. Such a thought-provoking post. Thank you for the challenge to go deeper. I know that God has blessed your study of the Word and your seeking His face. I have been blessed to learn from you. Thank you, my friend.

  3. LOL, people are still reading what I wrote? I don’t even blog in the same spot anymore! I’ve decided to grow a pair and once I get moved into this new house of ours I am going to blog WITH PICTURES of my daughter. To heck with those nasty NDers and whatever they want to think.

    My mind has not changed. I still hate that poem.

    My daughter is six and a half and more severely affected. She did toilet-train this May after a few months on the SCD diet and I am taking the plunge and chelating soon.

    More of us need to stand up like this and talk about our kids and treatments and how long this insanity has to go on before the government says enough.

  4. Amazing, kinda awesome subject. I’m going to blog about it likewise!

  5. Love this – I totally agree. I was never fond of the Holland poem either. Autism isn’t like reaching a different destination which is just as good – well, maybe if your kid is high functioning and well behaved it might be. But for the rest of us with the uncontrollable child who keeps us a prisoner in our own home, no, it is not just a different destination.
    Through biomed, we’re on our way “home” – you see, we don’t much enjoy our trip to Holland, let someone else go – we’re going home.

  6. Go on Girl!!!……I love it!!!

  7. I hate both the stupid poems too. Ridiculous bull….. The thing is you can’t get out of the mess you are in. There is no way to get back on the track you were on

  8. I too tire of these pithy, romanticized notions of parents and teachers of children with special needs. As if we’re saints because we do what we do.

    I teach special ed. because it’s fun. I like knowing kids and their families for several years. I think general ed. is a drag.

    I’m not a hero. In fact, I’m selfish because I wanted a job I liked that didn’t involve a cubical.

  9. I wasn’t offended by your opinion of the poem Holland,so please don’t be offended by mine. I first read it after my daughter was diagnosed with CP and I loved it. The words ring true with me because I didn’t want my child to be different but it wasn’t my call. Her diagnosis did open a whole new world of experiences, people and challenges but the analogy of the poem was right on. It hasn’t been easy but raising a healthy son wasn’t either. I do consider a lot of the people I’ve met along the way Angels or Saints simply because they know how to communicate with children so they feel like people, not freaks of nature. It isn’t just a job to them,it’s their nature. As for God, He is and will forever be my rock. I hope this does not offend anyone as well.

    • Annie, I’ve got to tell you that I’ve shifted my perspective a lot since I wrote that post a couple of years ago. I was in such grief and so desperate for all of this to just “go away,” and I was so determined that if hard work and figuring out this faith piece could get my son on a different trajectory, that’s what I was all about.

      Three years into this journey, I have grown much in wisdom. I have learned much about the value of every human life and that worth or potential does not have to be determined by “typical.” I’ve learned that the supernatural power of God is just as evident in changing my heart to choose joy even when circumstances don’t dictate it. I’ve also learned that there is something profoundly beautiful about being sweetly broken by Holland, and that it can be beautiful abs richer–emotions different than I ever would have experienced if I would have just gone to Italy like everyone else. Your daughter, my son are gifts and God has good plans for them that cannot be hampered by disability. So, thank you for your push back. I’ve finally gotten to a point where I can 90% agree!

  10. Well said. Sometimes I feel like I’m the one learning and my daughter’s the teacher. Actually, most of the time! Take care and I truly pray you get to 100%.

  11. What people do not realize is the woman how wrote Holland was a writer on sesame street and not a new mom to a child with special needs. She was around 49 years old and her son was in his teens. The poem is not for everyone, and I think her background in media gave the public without special needs kids an easier way to look at “those people”. In my opinion, she new what sold and that is what she wrote. She also profited a lot off of her son’s condition monetarily and professionally by putting him in show business. I am glad to hear other people with special needs children are less than impressed with her poem. I am not sure how authentic her experience actually is.
    Someone who truly embraced their experience would not just be passing through another country, they would have moved their permanently as I have.

    • Emily Perl Kingsley is a writer who joined the Sesame Street team in 1970 and has been writing for the show ever since.

      Her son Jason Kingsley was born with Down Syndrome in 1974. Her experiences with Jason inspired her to include people with disabilities into the Sesame Street cast, including an actress who uses a wheelchair, Tarah Schaeffer, and even Jason himself. Jason’s story was the topic of an hour-long NBC television special in 1977, titled “This Is My Son,” and with co-author Mitchell Levitz, Jason wrote the book “Count Us In: Growing Up With Down Syndrome.”

      In 1987 Kingsley wrote “Welcome to Holland,” a widely published and translated piece which compares the experience of raising a child with special needs with traveling to Holland. The same year a made for television movie she wrote “Kids Like These,” premiered on CBS-TV. The film, about a middle-aged couple who have a son with Down Syndrome, won numerous awards.

  12. This is bullshit pardon my language but mothers of special needs children r saints and who do u think u r telling any mother any child who’s less than perfect isn’t special enough and to all who like this blogger gtfa from me

  13. I would like you to consider…I am the mother of two special needs children. I’ve been doing this for 32 years. I know it’s not the life we would have picked for ourselves, but who says you get everything you want? I really have to wonder why you have you “panties in a bunch” over a stupid poem! I live my life as a support to others. I help anyone I can and I embrace the challenges given to me. My life is nothing like I expected or hoped… too bad! I enjoy some aspect of every day no matter how rough. Step up and stop whinning. Look into the face of the child you have been given and love them for who they are and stop seeing who they are not!

  14. My 26 year old son is Aspergers. It has been a very rough for my husband and me. I had heard somewhere that children with any form of Autism never touch drugs. Not so with my son. He got into drugs in the severist form. At 25, he started heroin. Not only was I faced with his disability but with his addiction. I’ll never know why he started but I am sure it is because he never had any real friends. These people reeled him in and in he stayed. He is in recovery now but the percentages for staying sober aren’t good. Do I pray? I’m not sure where my religion stands right now. He is the love of my life and could have done something with his life. Though he is also learning disabled and he is not one of the brighest children, he loves doing all kinds of things. He was never stuck on one thing. He just doesn’t have anyone to do all these things with. Our local autism center said he I was too high-functioning to join the other AS kids and young adults. I am not sure how I feel about “Holland,” but I am sure that in our hearts and minds, we all have our own poem and that we could fill libraries with our thoughts. I don’t know any of you, but I love you all and wish the best for your families.

  15. I, myself, do like the essay Welcome to Holland. Yeah, it’s short, sweet, and to the point, skipping over all the hard stuff, but that’s what it was intended to be…a short essay to quickly and to-the-point describe what it’s like to have a child with special needs. Everyone will be different, some will have more special/severe needs than others, but this one, short description tells the rest of the world what it’s like in a very easy-to-understand analogy.

  16. Yes. Thank you. About six months after my daughter was diagnosed with an ASD, my husband’s narcissistic aunt decided, in front of an audience, to give me a belated “Christmas gift.” It was a wrapped picture frame with the most awful “inspirational message” I have ever read. The opening line is “It may feel like a curse sometimes, but having a special needs child…” To paraphrase four paragraphs later, it goes on to say “While other parents are focused on little league and school plays, you will have to focus on simpler things….” She first told my husband she wasn’t sure how I would take this “gift” and considered not giving it to me. Her final decision was to give it to me as a belated Christmas gift at a New Year’s Party in front of party goers ringing in the new year. Why the huge leap? Because this meant she would have people patting her on the back all night. Exploiting my child was just the price my child and I would have to pay for her to have her audience. I avoid her now because the inevitable “My intentions were good” will come out, and we all know that isn’t true. Let me be clear. I am not blaming God. There are ample blessings in my life and my daughter is first among them. However, using a child with a disability to make oneself look good is beyond reprehensible.

    • When I told my Aunt that my son had high-functioning autism, she said,”Oh. I feel sorry for you. All that head banging and arm flapping.”
      Ignorance is bliss, so I’m told. When I first took my son to a pediatrician to find out if my son had Aspergers, the doc tested my son briefly and told me it was my marriage that was troubled. This doctor now writes a column for a community newspaper and every time I see it, I want to vomit. Forgiveness does not come easy but it does come.
      I think there will be many times when you will hear or see something about your child’s disability which will upset you. My brother thinks my son is mentally retarded. My father-in-law always said he feels sorry for Brett but he has never even sat down with my son to read to him or throw a ball to him. It is I who feels sorry for my father-in law. My brother has an adult son who is very bipolar so my brother should know better. I will go to my grave helping my son because he is a worthy, loving, smart young man. As for the people who chose not to know my son, it’s their loss.

  17. I’m sure the poem means different things to different people. Right now I hate it. I feel that finding out my son has autism is not the same as simply going to a different place than I expected. My son is not just different he is going to have to work harder than other than people and struggle everyday of his life. That is more than just being in a different place than I expected. I love him and value him as he is but I hate to see him struggle. If I knew that he was different and unique but not suffering it would be okay. But it’s not just being different or living differently it is being hurt. And so that’s why I hate the Holland poem. We are not in a different place, we are in a hurting place.

  18. I agree 100% with you. People always say God gives His strongest solders the Hardest battles. I would just stand in shock like I’m not strong!! When I had my daughter I was angry at Him bc I honestly believed God did this to her and I was getting payback for not always following His direction. So I wanted answeres I wanted the truth I dug myself into Gods word so severely I started seeing the True God a Father who loves me unconditionally. As I began to seek Him for answered He did something in me that was beyond what I could have ever known. I fell in Love with God His word His Love His Joy Peace Strength I began to feel these things as well. He dwells in me and now I can say I am strong bc of The One who lives in me:) I count ever man a lier and Gods word to be true!! I have build a relationship with God build on stone and not sand He is my cure and He is everlasting. Vicorty it is my Friend!! Wonderful article!!!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: