Down syndrome · Me

Goals not met.

Today I made the goal that I WOULD post today. I wrote it on my status update that I was going to blog after Abby’s six month review, which I knew wasn’t going to be fantastic. In my brain I composed the beginning of this post. Several beginnings, as I usually do. I was rushing around trying to make my house not look like it was growing and moving with lifeforms unknown and thinking about stories I wanted to share. I wanted to tell you about the Imagine Autism Walk yesterday and how proud I am of my son for LOVING his autism. A post to end Autism Awareness month. Then I started braintinkering with a post about Listen To Your Mother- a show I’m in this Saturday. How I am in awe of the amazing women I’ve been able to meet because of it. How I’m learning to come out of my own shell blah blah blah blah.  Then I started thinking about the shit that has gone down in the last week in the autism and Down syndrome communities and wanted to write a hard hitting angry piece.  Just as I started to REALLY steam the doorbell rang for Speech Therapy for Abby followed by her six month review. I promised myself that one of those posts would get written before the day was over.

A review is when you sit around and talk about all of the fantastic gains your child has made in the last six months. You make new goals that your child will not only master, but far surpass in the next six months. Except, I knew going in, this wasn’t going to be that meeting. I knew her speech had stagnated. Abby doesn’t talk. She DOES communicate, but she really doesn’t have many words, and those are rarely heard. She’s said “mom” but has never called me that. I want her to call me mom. I want it so much. We started with Speech. No surprises. We moved to occupational therapy. Surprise. Goals not met. We moved to physical therapy. Surprised again. Goals not met. We moved to feeding. Those weren’t met either.

None. None of her goals were met. We wrote the same plan over again. Same goals.  It’s not to say that she hasn’t made progress. She has. It’s just slow. I called Lance and ugly cried while I ate a block of packaged meat. I’m not sure why I’m telling you that part. I was pretty messy. I just straight up chomped into it instead of  eating it by the slice on something like bread or in a salad.  I felt myself slowly climbing back into my Motherhood Box of Shame that I’ve worked like crazy to get out of. That it was MY fault for not pushing her harder. For working harder with her. He said, “It’s hard for me to feel like we need to push her harder. Sure, we want her to progress, but she’s so much more than can be quantified on an evaluation. She’s so much more than what she can’t do. On top of that, she’s got so much to her that can’t be taught, and I don’t want to take any bit of that from her in the race for goals.”  He reminded me of what the last six months have been like for Abby. She’s been really sick. Correction, she’s been patient, upbeat and strong while she was really sick. She’s had surgery that she just barely stopped having nose bleeds from. Correction, she had multiple surgeries all at once, and was up and walking and laughing the next day even though she wasn’t feeling great. She dances through the same kind of allergies that make me feel like a very hateful zombie. She’s amazing. Talking will come. Motor skills will improve. It isn’t a race. She’ll get there in her own time. In the meantime, she is herself. She’s confident and stubborn and spirited and wonderful. That’s stuff that can’t be taught.

The cutest girl in the world

I did not meet my goal of writing a blog about Autism, Listen to Your Mother, or anger. Things change.  I’m glad they do. I sat down earlier to find that a lot of people had commented on my status with words of support and love for me and Abby and how they’ve had times where there wasn’t progress. I cried as I felt such love from people I’ve never met.

My goal wasn’t met. Neither were Abby’s.  Life got in the way. But at the end of the day, I’m so grateful that it did.

23 thoughts on “Goals not met.

  1. I’ve said it before and I’ll say it again. That little girl is the total embodiment of what it means to be loved and to feel happiness. There is no way that she is anything other than exactly as she should be. She will get wherever she is going, whenever she gets there. You, my friend, get the unique pleasure of enjoying every freaking second of that smile, giggle, tummy, and everything else while she works on getting there. Screw the reviews. That’s for the therapists, not for the mommy. You are totally meeting the goal of loving your sweet little girl. She OBVIOUSLY feels loved.

  2. Want to hug you! I feel your frustration. I love your husbands response. Abby is proof of the power of love! Get out of that Motherhood Box of Shame, I was planning on redecorating the box and you are in my way:)! Your love and dedication to Abby and her brothers cannot be quantified.

  3. What jillsmo said there. Plus, if that kid gets any cuter it’s gonna kill me. Who says she has to do all that growing up meeting goals crap, when she could stay cute and sweet and mischievous a little bit longer? I swear, she is the one toddler I have seen who I have to admit is as cute as (maybe even a smidge cuter than)my own Abi.

  4. Sounds just like what happens with my Oli. A lot of her goals aren’t met when we go in for a re-evaluation. In fact, I can’t remember the last time one of them was checked ‘mastered’. But, a lot of goals that she has mastered cannot be written or measured on paper. She hugs now! She gives great hugs and she gives kisses. Both of those things are relatively new. She’s almost 6. Progress is slow, but as long as there’s progress that’s good. I have to remind myself of that. Great post!! It’s nice to read that I’m not alone and that other moms feel what I feel. Thank you for that.

  5. We’ve had those reviews, too. In fact, I think sometimes that if we put a certain goal in writing, we’re almost guaranteeing he won’t meet it. My boy’s last IEP meeting went that way. He hadn’t met a lot of his goals. We moved some goals to the back-burner and continued others on to this year. His last speech evaluation went much the same…his speech stagnated for 6 months. It’s hard, especially when you see progress – intangible progress – but the scores and goals don’t always reflect it. I’m a firm believer that the biggest goals can’t be quantified with reviews and standardized testing…the little things like happiness and warmth are harder to put in an IEP or IFSP.

  6. Oh, Lexi! I know how much it hurts and how much we think it’s our fault. I have been down this road so many times I could give guided tours. But I finally found a way to reframe it: We ARE getting closer to our goals. We’re taking the scenic route and we may not be meeting our self-imposed DEADLINES, but we’re getting there.

    Any time you doubt you’re doing your absolute best by that beautiful daughter of yours (or by your boys either!), pull out the pictures you so proudly share with us. The ones which show the joy, the sass and spirit. The utter surety that your children feel safe being who they are as they are right here and now. That’s what will propel them all toward those goals at whatever pace they need.

    Believe me, one day you will suddenly realize that Abby’s doing SO MANY THINGS she couldn’t do before and you won’t really remember when the change happened. Because you will have been too busy just loving her and encouraging her. Pinky swear. xo

  7. you know what?

    you have to do the honking goals because that’s how the paperwork about services is organized. it has to be organized somehow, and it’s not a perfect method, but think of it as progress in the system.

    it is tempting to feel shame or place blame when we don’t meet the goals but really sometimes we don’t know what the goals realistically should be or what reasonable progress looks like when it actually happens so we pull stuff out of our hats and make some guesses.

    try not to think of the goals as an evaluation of you or your kid but maybe as a framework on which to hang some of your hopes and expectations and to keep all the players on the same page.

    you just keep on keeping on, ok?

    do you have goals for yourself every day? i do. they’re just guidelines. sometimes i do what i had hoped to do and sometimes i do better or worse than expected.

    every day i try to do a good job with what i have and some days i do better than others. tomorrow i will try to do better than i did today.

    even if i did great today.

    that’s important. it is really important to have hopes and goals but it is vitally important to let go of them if you have to and it is screamingly, grippingly important not to let yourself be crushed under the weight of them.

    you have the wisdom to know when you have done your best with what you’ve got.

    let yourself breathe.

  8. Get out of the box of shame! You are doing great and Abby is doing great! She may just be doing great at a slower pace! 🙂

  9. Screw that guilt. Seriously. I realized when Cora turned 2 that her gross motor skills went from approximately the level of an 7-8 month old when she was 1, to about a 10 month old when she turned 2. How’s that going to look on paper? But the truth is, she’d made loads of progress. It’s just slow. Sometimes slow can be painful, since it’s not as impressive when you measure it like that. But darn it, she’s developing. Cora is and Abby is.

  10. Oh Lexi. I’ve been there girl. Natalie is almost five and doesn’t even have a 2 year old’s speech level. Madeline is 6 and has a speech level of a 3 year old. Madeline didn’t walk till 3 years old. She doesn’t know her last name. Can’t write her first name.

    And yet…there are so many thing they do that can’t be measured on a test much like your Abby. They aren’t failures. They are just paving a different path in their own time frame.

    You are such a great mommy. I too know what it’s like to be ached to be called mom. Both of my girls hadn’t used that word until last year. Same with I love you. I waited quite a few years to hear that. When it happens it will be magical and you forever engrave it in your heart to be remembered for always. And THAT feeling will never go away or ebb with time.

  11. I m in constant awe of you and all you do, not only for your own family, but for countless others. Stop beating up on my friend. You do so much for so many. Take a step back and breathe.
    Your hubby is a wise man. Cut yourself the same kind of slack you would for one of your friends. When you doubt yourself, just look at that little miracle of yours and KNOW that she will get there when she is good and ready to. Because she will.
    XO

  12. I love your posts about Abby, especially, and I have to tell you that I think you are doing a fantatic job. Seriously, in that completely adorable picture she is dressed in cute, matching, clean clothes, and you’ve even done her hair in pigtails!!! Are you kidding me, You are super mom!! My girls ask me if they can have “nothing” in their hair before school, and I “give in”–mostly because I’m too lazy to make them get a clip or something for me to put in it. Even though I know that they look cuter with their hair cone, but it’s easier not to. Although the whole time I’m worried that their teacher will think that I’m THAT mom. Cause she’d be right.

  13. Im quite new to your blog, and love it…As an EI PT, how about another perspective? Maybe the goal was not a good one for her at that time based on her medical history, or her self directed/motor driven/observant/cautious/insert descriptor here….or maybe the team is not taking into consideration the building blocks of each goal, and how she is beginning to move toward them. Maybe she is taking baby steps towards her goals and that IS progress. An evaluation (and especially a standardized test) is a snapshot of how the child is doing at that particular moment. Maybe she has not really connected with the therapist, or its a therapist centered approach vs child centered, or maybe Abby needs/wants more structure. Maybe all her energy has been spent in healing, getting healthier and growing and that is enough for this 6 month period. Perhaps a new goal is to support Abby as she explores and plays with family and friends in a safe and nurturing environment. How about “working toward goal” and not “goal not met”. Slow and steady wins the race.

  14. This motherhood box of shame you speak of…I think we all have one that we crawl into more often than we would like to admit. That box is a bitch. I hate her. I keep trying to break up with her, but like SOME PEOPLE to Jill, that bitch keeps stalking me and probably always will. I love how you are able to (at least on paper here in this forum) look at the wonderful things your kids CAN do and are able to kick that boxy bitch to the curb. I ❤ you Lady.

  15. What a beautiful and truthful piece this is! Thank you for sharing it, it made me feel better. Your husband is very wise. I do not have a child with autism or Down syndrome but I could certainly relate. Why do we push our children so much? We need to learn to accept and celebrate them for who they are!! I love reading your blogs they always speak to me – please keep publishing them!

  16. I favor the dear information and facts you actually source on your reports. I most certainly will search for your blog site and also test out just as before the following usually. Now i am moderately positive I will understand a good amount of innovative stuff listed here! All the best for the next!

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