Friday, August 31, 2012

Pity Party

I know it's Friday.

And I usually like to send you off with something happy and fun for the weekend ahead.

But I'm feeling a little bit sorry for myself and I'm wondering if you'll just indulge me; allow me to ramble on for this post and get some things off my chest.

I think all of you know that Lily started kindergarten this week.  The teachers are great.  The principal is wonderful.  There's just a sweet atmosphere surrounding the elementary school and I'm really happy that we chose this option for Lily.

I'm expecting some great big things this year.

And really, Lily's already had some quite amazing moments, even in this first week.  For example, my partially potty trained child stayed dry for two days, using the potty like a champ.  In about 20 minutes, she mastered using her PECS "yes" and "no" cards to answer questions.  She helped her Life Skills teacher do calendar time with the class and loved every minute of it.  She went on the playground and had some awesome social interaction with some typical kindergarten girls who were all too happy to learn how to use the PECS cards to encourage Lily to "talk" to them.

But here's where the pity party starts....

Up until this point in Lily's life, she hasn't really been so engulfed with typical peers.  Except for Sunday morning church, Lily has been very sheltered, attending private therapies and a private ABA clinic.  She spends most of her time with other special needs kiddos and adult friends.  As a result, most young children I see have special needs of some kind.

Not anymore.

Never has the difference between Lily and her peers been so glaringly obvious as it has been to me this week.

I see children excitedly telling their parents about their school day.

I see children hugging their friends with delight, so glad to see them after the summer break.

I see children riding their bikes or walking home from school, loving that first little taste of independence.

I see children running excitedly onto the playground after school while the parents casually loiter and visit with one another.

I see parents that know nothing about 504, LREs, ARDs, IEPs, FBAs, BIPs....

And I'm jealous.


I said it.

Because while Lily has had some stellar moments this week, she's also had some not so stellar ones.  Like when she bit her Life Skills teacher, not once, but twice.  Like when she turned chairs over.  Like when she actually lifted the lid on the potty and climbed in.  Like when she swallowed a small plastic reward token. (and yes, the teacher was sitting right there with her eyes on Lily when it happened so it wasn't a matter of neglect.)

Honestly.  How many of you got phone calls from both the school nurse and the principal this week?

Of course, everyone is deeply apologetic about the token swallowing but it's hard to not be able to say, "Rest assured.  We will take care of these behavior issues at home."

I mean, we completely agree that the behavior is unacceptable.  And we want it to change as much as, if not more than, the school staff.

But everything is just triple challenging when you have a special needs child.  A quick swat on the behind solves nothing.  An If/Then behavioral chart is a laugh.

I've raised two other girls.  I know how to discipline children.

But honestly, I don't always know how to discipline this little Bird.

And for that reason, right now, I am feeling sorry for myself.

I feel like I should know these things.  Like I should be able to tell the teachers some tried and true methods for taking care of behavioral issues.

But I just don't.

About the time I come up with something that does work, Lily changes and it doesn't work anymore.  And some things work for some people and don't work for others.

Plus, I'm feeling sorry for myself because my kid doesn't come skipping out of class, showing me artwork and asking if she can do the slide before we go home.

I'm feeling sorry for myself because I have a knot in my stomach when I pick Lily up, wondering what shenanigans she has pulled today.

I'm feeling sorry for myself because Lily is on a special diet and can't eat birthday treats - and she really doesn't even care.

I'm feeling sorry for myself because short of wearing chain mail, I can't promise the teacher she won't get bitten again.

I'm at a loss.

And I don't like feeling this way.

Well said.

OK - enough sore feet.

Time for the music.


  1. If it makes you feel any better at all, you are not alone. Everything you just wrote of tends to break my heart when I least expect it. Someone once told me, make no mistake, you are in mourning. Mourning for the child you thought you would have and the sister you thought you'd be giving your other two children. Mourning for the life you once knew. I love the Toodle Bug with all my heart and most days can just see the blessing she is to everyone lucky enough to know her, but there are days when I feel the "death" all over again. And it can be shattering. So I say, let yourself feel sorry for a bit. That's okay too. I am linking you to this post I wrote quite a long time ago right before Christmas. I hope in some small way it makes you feel less alone and/or guilty for feeling just a bit sorry for yourself every now and again.

  2. You and Lily are covered in prayer.

  3. Oh Lana, my heart goes out to you. It probably doesn't help to know that What you're feeling is not unusual. And you know, you're entitled to have a pity party. Hopefully getting it off your chest (blogging is free therapy as I like to say!) will help get you back on your feet. I know my guy is high functioning but I had similar thoughts when he was younger and for years felt very sad that he didn't start in mainstream school the same time as his NT peers. Every year I see our national TV station do a film piece of all the cute NT Junior Infants on their first day of school and it makes me sad! I'm over our beginning but I think of all the special needs parents who are so worried about their children but equally proud of THEIR 1st day...

    Hope Lily continues to blossom and that school and yourselves will find strategies that work. Meanwhile keep playing the happy music!

    xx Jazzy

  4. Like smilinjo said, Lana... you are not alone. And right now, I'm sending you super-duper internet hugs.

    Seeing your child among typical peers is hard. Like it has been for you, school was a HUGE wake-up call for me too. Little Miss's differences stood out so much -- and they continue to stand out. How can that NOT wear at a person's soul?

    But I'm going to let you in on something -- it will get better. Lily is going to continue to grow -- albeit at her own pace... but these things you see now... with practice and understanding -- will fade.

    It took almost 2 YEARS of school before Little Miss gave me the slightest hint about what happened during her day. I'm still jealous for those kids who show off their art projects and tell their moms about recess... but that day I got a little something from Little Miss? Wow.

    Lily will get there -- maybe not in the same way or on the same timeline as her peers, but she will get to the place that is right for her. THAT is all that matters.

  5. I cried with you and I am praying for you.

  6. You are NOT alone! My sweet girl is now in 8th grade, but I remember those days so vividly. The hurt is obviously still there as I teared up reading your words. It definitely taught me how to celebrate each and every accomplishment, no matter how small it might seem to others. I grieved over those differences and the things I might not ever see or experience. I still struggle with the differences that are so glaringly obvious. My niece who is only 6 months older just started high school, made the swim team & is busy with her friends. I'm thrilled for her, but I still hurt for those things that my daughter may never do. Instead we celebrated how well she did on her math lesson yesterday and were joyful with her about receiving The Lorax on DVD.

    Allow yourself to hurt, to share that hurt with us, & then focus on what is ahead. I promise you there will be more days of feeling sorry for yourself & being jealous, but there will also be great days of accomplishments & total joy!

    Blessings to you!


  7. I'm with you. I have mini-pity parties all the time. This week has been difficult because we have company with a child 4 months younger than Boo. I see everything he can do and think to myself it's not fair! Then I think my Boo cuddles and he hits so it's not so bad.

    I think it is okay to have the party once in a while. You can only be the family cheerleader for so long.

  8. I am not a parent but a teen who has a hearing loss and gluten intoreance. I would bring special treats in for Lily for class parties and such. Even though she may not be able to express her feelings and may not even know the difference and it is one more way to make her feel included and not different. Just my opinion :)

  9. So sorry :( I don have any other words but feel exactly the same way.

  10. Lana-reading your blog brought tears to my eyes. I am not going to tell you that I know how you feel because I don't have a child with special needs. However, I do have children and I always feel for them when they get hurt, or when people make fun of them, or they don't measure up to other people's expectations or have as much as others. I also feel for you because I love the Bird and every special needs child (as well as typical ones:). I agree with what Mom2LittleMiss said, Lily will experience progress in her own special way, she already has, even in church:)As Whitney O. said, you are covered in prayers and loved by so many.

  11. I can is very difficult to watch "normal children" do things that your child cannot do. I see that with my little guy all the time. It is difficult to put aside what you dreamed of for your little one and face reality that things are different and not what you signed on for with regards to being a parent. At least it has been that way for me and there have been days when I have cried and wondered why..I wonder if his issues are due to my getting sick so early on in pregnancy, being of "advanced maternal age", some sort of environmental factor..the list goes on and on but it does not change reality...I know you love The Bird and I love my little guy and in the end that is what matters...hang in there and keep doing your best and it is okay to have one of those days every once in awhile..give yourself permission to grieve for what is not.

  12. Thanks to all of you for your understanding and kind words. It means so much to know that there is a great big community of people who "get me" and offer wonderful wisdom and prayers for me and my family.

  13. Kate of Rainbows is the name of her blog) posted a similar post about her son Gavin who started kindergarten last week.

  14. I hear you! Google Elizabeth Video Project1 on YouTube - maybe that will make you feel better. Enjoy the successes and try not to compare your life to others - everyone has something. Hang in there!

  15. This breaks my heart for you my friend, because I know exactly that stabby pain of those other NT kids. It hurts. But you know what? What I learned once I started listening is that we miss out on a lot of stuff that I'm happy to miss out on. Like when one of Toots many girlfriends told me about her mom's skin rash all over her body that her mom did not want her to talk about... yeah. Toots doesn't tell any embarrassing family stories to strangers. That's pretty cool. Remember, there are always many different angles to look at something from... Once you chew that bitter pill that we all do, you will see it more clearly. For now, when you choke down all that NT-ness, know that we are choking right along with you and passing the "chai tea" to help it go down more smoothly. Lily is beautiful and she is just beginning her adventures. With learning will come more skills and more skills and soon, you will be looking back on these days with amazement at how far she's come. ((((Hugs))))


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