About What I Can’t Write

I’ve written various drafts of this post for months. And never hit “publish.” But when I heard today’s news that the CDC has revised its estimate of the prevalence of autism in the U.S. to a shocking 1 in 88 kids (and 1 in 48 boys), I felt I should speak up.

I can’t tell you in what ways autism (or autistic-like symptoms) has affected my family. But I have told you before at this blog (and on Twitter) that I have two children with special needs, and that I am also a single parent. In my spare time (ha!) I am a special needs advocate and serve on the board of a NYC non-profit serving people with developmental disabilities.

For many reasons, I can’t go into specifics about my own children’s special needs. You do know that my son (who is now age 5 1/2) has apraxia and sensory problems. He attends a wonderful school for children with learning disabilities, and is making good progress.

My daughter’s situation is more complicated, and her symptoms and diagnoses are more stigmatized than my son’s. She is now eight-and-a-half and for privacy reasons, I don’t divulge much information about her on this blog. There are also legal reasons for this, and if you’ve gone through a divorce you might imagine what they are. It is hard not to be able to share and seek the support of others. I can tell you this about my daughter–she is beautiful, bright, opinionated, funny, and destined for great things. I can also tell you that she suffers. A lot. And so does our family, as a result.

There is so much I wish could say about my experience of raising two children with special needs, particularly against the backdrop of a tough divorce. If I had a dime for every person who has told me, “Joanna, you must write a book….”, well, I’d be very rich. Sometimes it is strange to me that the reason I am known (mostly) in the blogging community is because I write this shopping blog. Because shopping (and blogging) are actually a very small part of my life, and any work I have done in any career (blogging and others) has simply paled in comparison to the most staggering, overwhelming, challenging, and unexpected role of my life–raising two children with significant special needs.

Back to the CDC’s news today. Soon after I heard the news, I spoke to a friend of mine whose child is significantly impaired by autism. “We knew it, right?” she said. She and I, and the legions of other women in this crazy “sisterhood” of parents of special needs children, just knew that the old figure of 1 in 110 kids having autism was just too rosy. We know because we “see” it everywhere. We are trained–our eyes, ears, and gut feelings can tell us when a child–not just ours–is “off.” Frankly, we even think that the newly revised number of 1 in 88 (and 1 in 48 boys) may not last long.

I thought about all of this this morning as the news kept getting re-tweeted on Twitter, and as I spent a brisk but beautiful spring morning with my 5-year-old son who is off from school this week. We visited one of our favorite NYC haunts, this little gem called Greenacre Park. We tossed pennies into the waterfall and made wishes. I took some pictures (sorry, I disobeyed a sign).

Then we stopped for his “lunch”–a soft pretzel. I’ve mentioned before he is an exceptionally picky eater. He is going to start feeding therapy soon. Another story for another time. There are so many other stories for other times…and, yes, I could fill a book. Actually, a series of books.

My son doesn’t have autism (as far as I know), but he has significant special needs, and more than several people have asked me if he is autistic. We get looks wherever we go…when they hear the odd cadence in his voice (caused by apraxia), stare when he melts down (because a sound is too loud or a smell is too strong for him). But this morning he was happily eating his pretzel, and at 11am a nearby church sounded some beautiful bells.

“Hey! I hear that noise!” he laughed. I laughed too. For a moment, I thought, “Well, who cares?” More and more children are being diagnosed with special needs. And life doesn’t end…it goes on, for all of us. We take these moments that we can with our children–special needs or not–and make the best of them. We hear bells and music and we laugh.

Then about a minute later, my son burst into tears, and covered his ears, and cried, “The bells are too loud.” Back home we went. Moment over.

I have enough little anecdotes like these every day to fill an entire blog–several, actually. Some moments are mundane, some are extremely poignant. Like when a pediatrician told me my child may not walk, or a speech therapist told me my other child may not speak. Like when a doctor told me, “I don’t know what else to do for her.” Like when people have made fun of both of my children. Like when I received a devastating diagnosis about my child, and two moments later had to be in court for my divorce. Most of all, the moments when one of my children has cried to me, “Help me get better.”

But, my hands are tied from writing more about those moments. Instead I write a shopping blog (don’t get me wrong. I love writing MyMomShops and it has kept me sane for the past 5 years).

I’ll admit I get jealous or even angry when I read other blogs where a mom complains that she is a “single parent” for a week while her husband travels on business, or that her child is “difficult” because he or she wakes up at (gasp!) 6:30am, or that she has a child who is “occasionally” moody.

At the same time, I am extremely lucky that I was raised to be an optimistic, grateful person. I am eternally looking at the glass as “half-full.” I am blessed with loving friends and family that help me with my children in every possible way, including getting them the help and therapies they need. My children are physically healthy. And, four and a half years after my marriage ended, I am in a wonderful relationship now with a man who is 100% supportive both of me and of my children exactly the way we are.

Maybe some of you will pay very little attention to today’s “1 in 88″ news. That’s OK. I just want to ask you this. If your children are typically developing and have no developmental disorders, please take a moment after you read this post to be grateful. Think of how tough “regular” parenting is for you. Then think about how much harder it is for those of us who parent 1 or more children with developmental disabilities, and/or do it on our own without a spouse. Please think before you judge children on the street who seem out of control, poorly behaved, or spoiled. Think about what those children–and their parents–might be going through.

Unfortunately, as today’s news indicates, parenting is about to get tougher and tougher for many of us.

Thanks for reading this, and I welcome your thoughts and comments.

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25 Responses to About What I Can’t Write

  1. Jillian says:

    J,
    You know I walk in your shoes. Well said, my friend, well said. Here's to the day when kids with special needs are always looked at as kids first.
    Peace.

  2. Anonymous says:

    Your kids are extremely lucky individuals for having you as a mom!!!!! Wouldn't it be nice for all kids with special needs to be "equal" to typically developing children…I've been wishing that since I was aware of my brother's condition as a young girl..You're an amazing person, friend, mother and advocate and I hope you don't give up looking at the glass half-full :) )))

    Maria

  3. Single Mama NYC says:

    I want you to know that I was one of those people who'd shake her head at parents who had children who were acting "out of control" in public. I was raised in a very authoritarian household where children were to behave perfectly in public or they'd incur the wrath of God when they got back home. So, when I'd see unruly, "disrespectful" kids I'd shake my head and lament the lack of parenting going on there. Then I became your friend. And I met your wonderful children. I will never forget sitting on a park bench when you described a particularly challenging public moment with your girl and I said to myself, "Never again. I will never sit in judgment of ANY one else, no matter WHAT the situation looks like from afar". I want you to know that I've kept my word.

    Thank you, J, for giving that to me. For opening my eyes to my past conditioning; to see that it made me judge instead of empathize. Thank you for giving me the proper perspective. You are such a terrific mom. I love you, dear friend.

  4. Isabel @alphamom says:

    Thank you for sharing your story.

    Your last paragraph is a perfect note on which to end.

    I look forward to the day when we all understand what Dr. Howard Koplewicz once wrote that truly made it all seem better about child developmental and mental issues: "Bad parenting doesn't cause them and super parenting doesn't cure them."

  5. mymomshops says:

    Thank you so much- Jillian, Maria, Issa, and Isabel- for these beautiful comments and for your support (and especially your friendship).

  6. b.mousli says:

    We are grateful… And surrounded by so many kids with special needs… And I'm also grateful that my daughter's best friend is a kid with special need going to a "special" school… They've been friends since 1st grade, and now in 5th going strong despite the different schools.. Thanks for your post, and here is another dime… you should explore how to get around those legal requirements and write that book…
    and thanks for the blog!

  7. Anonymous says:

    I'm a regular reader for years who has never commented on a post, but as a mom of a special needs kid, and someone who coincidentally just attended the initial session of a parent support group that is just getting started through my son's social therapy group offices, I am so grateful for your opening up and sharing more about your situation. Beautifully written post, and I wish you continued strength as you fight the hard fight we all do to get our kids (and ourselves) the support we need.

  8. tamara tamfrish@gmail.com says:

    Joanna,
    Although we've never met, I have followed your blog since the beginning because we know someone in common who told me to read when you started, and I got hooked :) I have read since you started with a very early waking baby and greatt shopping finds, to the tidbits about your kids, to the great opportunities you have had because of your HARD work. It is wonderful and inspiring to be able to read your blog, you are such an excellent mom, advocate, and writer. I wish you only the best.

  9. Anonymous says:

    Regular reader. . . family of special needs. . . love what our child has accomplished. . . love the other special needs children that have been part of our lives. . . love the laughter, tears, and friendships with mothers' of special needs. . . would love a nap!

  10. Anonymous says:

    I follow your blog regularly, but this is my first time leaving a comment. As a mom of two typically developing children I am so incredibly appreciative every day of what I have, and try to take any perceived difficulties in stride. What I admire most about parents who are open about their children with special needs, is the fact that they were willing to see the concerns, and do everything they can to address them. Nothing breaks my heart more than seeing a child who I believe would benefit from assistance and/or therapies, but the parent is unwilling to provide help, choosing instead to live in denial. And so I honor you as a parent who puts her children first.

  11. Aimee K. says:

    J, I am so proud of you. This post was beautifully written and brought tears to my eyes. I'm so glad you finally posted it! You have taught me so much over the years (did you know that?). I have become a fighter- I am battling our school district to make it a safer place for kids like Maxwell. I think of what you deal with on a daily basis and it gives me the strength and courage. You are an amazing role model for parents everywhere. I think of you often. I miss you and love all 3 of you! XO-A

  12. Anonymous says:

    Joanna- Knowing the additional details you graciously decided not to share here (I know why you can not) I want to say how proud I am of you. If people only knew the rest of this story! Well, they would be even more impressed with your courage and resilience. All our love to you and the kids. C. (and fam)

  13. Ellen says:

    Joanna, I completely related to everything you said. I can only imagine how much of a relief it was to finally put this up, but I KNOW how meaningful it is to read. You're going to change minds and perceptions.

  14. Teresa at MomsWhoSave.com says:

    I totally get it! I have a son with Aspergers, and sometimes I'd like to start a blog just about that, since it is the focus of my life. He's still at a point where he's very embarrassed about it though, and we're trying to help him overcome that. I truly understand everything you're saying, but for now I have to settle for leaving a comment here ;) I do also pass on autism info. wherever I can via Twitter, etc. My son just doesn't want HIS life out there for the world to see.

  15. mymomshops says:

    Teresa, I had no idea you have a son with Asperger's. I totally "get" why you can't blog about it. And how isolating it can feel. I'm glad you left your comment. And I *love* your own blog btw.

  16. Anonymous says:

    I am a regular reader of you amazing blog… what a heart wrenching story. How grateful I am for my completely healthy child. He has an eyelid muscle condition called Blepharophimosis (some surgery required in the next few years) but other than that he is healthy, happy, confident, developmentally on track and has perfect vision. Once again, I have to say that I am grateful. Thanks for a stunning blog.

  17. Anonymous says:

    I went to high school with J and remember her as a sweet and very smart girl. After reconnecting on FB, I started to read her blog and I am so impressed by what I read and so proud of her.

    J: you have a beautiful heart and soul. All of our children have "special needs" …they just need our love and it is apparent that you give your children oodles of it. They are so blessed.

    Love,
    Annie

  18. Jen @ TheUnProcessedKitchen says:

    Yes, yes, yes, yes. Yes because I know what it feels like to have your kid made fun of. Yes because people who have it good have no idea… yes because I can see "it" everywhere too, yes because even though you can't write about it – you worked around it beautifully and still communicated what needed to be said.

  19. Karianna says:

    Such truth. I wish those of us could get the support we need, and I am thankful for voices like yours.

  20. Anonymous says:

    I have read your blog for the past 2 years ever since I had my daughter. While I love your shopping entries, I was extremely moved by your post and I thank you for sharing your story and journey with us. I am a parent of a healthy child with a hands on husband and it is stories like this that make me realize how blessed I am and that we should not take anything for granted. Thank you for making me stop to be appreciative and to be thankful for all that God has blessed me with.

  21. Anonymous says:

    You are so sweet to share this post with all of us. Although I obviously have typically read your blog for the shopping tips, this post was very meaningful and special and just wanted to thank you.

  22. Melissa @ married sugar daddy says:

    Joanna–you are just one of the most beautiful and brilliant people I know. You have such a light that emanates from you and I've seen it in your daughter- by gosh those two are blessed t have you as their mama

  23. The Worthington Post says:

    So beautiful, and so sorry. You are a rock and your kids are so lucky to have you. I don't know you, but kids with special needs touch EVERYBODY. I can only hope in this situation I would be as brave as you are.

  24. The Worthington Post says:

    So beautiful, and I'm so sorry. Kids with special needs and their parents touch EVERYBODY. I have a nephew with autism, and another with severe developmental disabilities. It's so generous of you to share your thoughts, even if you must limit them the way you do for your protection and that of your kids.

    I hope you don't feel bad about the angry moments, and as the mom of three developmentally on-track kids, I would say you are more than entitled to them. Even knowing very little about your situation, you have my full support, and I am on your side completely.

    Sending you and your glorious kids love, comfort and strength!

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