Finding Ninee » Sharing our parenting and special needs stories with heart and humor.

Early Intervention Evaluations and the St. Patrick’s Day that Wasn’t

It’s not that I remember most of the St. Patrick’s Days that I’ve celebrated. I remember my friend and I sitting at Bennigan’s, annoyed with the drunks, not drunk enough ourselves to find them amusing or cheerful, green beer aside. I remember that the waitress forgot about us and that we left without paying after trying to pay for much too long.

Tonight though, I’m remembering the St. Patrick’s Day that didn’t happen, three years ago. That was the year when Tucker was two-and-a-half, and we’d gotten the paperwork for Early Intervention Evaluations two months prior. We’d had meetings, a hearing test, and an evaluation that sucked.

Whether I see my little boy – who is laughter and light – more fully when others are watching, or whether he is at his complete worst because he knows it counts, I don’t know. I do know that his evaluation was awful. He couldn’t or wouldn’t make a train using the blocks like they did, he hid under a chair, and he spent 15 minutes focusing on a black spot stuck to the dusty tan mini-blinds covering a dingy window that provided a view of a parking lot.

That was the day that we heard the words uttered with less kindness than I needed and more than was probably the norm, “I’m going to say it now – it’s NOT just a speech delay.” I felt angry, because didn’t they see how incredible my little boy is? What about all of the things that he CAN do, after all?

Early Intervention Developmental delay evaluations suck but they will be fine

But early intervention and special needs evaluations are not about what the kids CAN do – they’re about what they’re NOT doing. They’re about the things that their peers are doing and they’re about taking steps to figure out what to do to help them and to further grow them and to study a particular child’s needs before making recommendations on meeting them.

They’re also about fear and worry and heartbreak and hope because no matter who you are, sitting in a room while you find out whether your child is deaf or not is hard. Sitting in a room when he will not or cannot make a tiny train using six blocks the way that he’s “supposed to” is life changing.

Realizing that he’ll never catch up is scary and realizing that it doesn’t truly matter whether he does or not is freeing. All of it scary and freeing and also just life and just us and just Just.

By St. Patrick’s Day that year, we had begun speech therapy that wasn’t even speech therapy. It was having our son sit in his high chair and focus on something for 30 seconds. 30 horrible forever seconds because all he had to do was point to Daddy’s ear.

Sad Boy _edited-1

I have video of this… he was so upset, just told to touch Daddy’s ear. His finger is not going to touch Daddy’s ear, by the way but going to pick his nose because 30 seconds of trying to do something was that stressful.

I do not know whether that day was the week before, of, or after St. Patrick’s Day that year, but I do remember that when the holiday came, I felt surprise. It was, I guess, a reminder that people were planning and talking about drinking green beer, and celebrating on what was most likely a weeknight because that always makes those holidays more fun.

I remember thinking that it wasn’t that long ago and that it was a lifetime ago that I, too, would have had several phone calls and wardrobe changes and plans and the stress of trying to please everybody because one group of friends wanted to meet at a house party and the other, a bar. Wanting to do it all, as always, and that year, wanting to do none of it, consumed with worrying about my little boy.

Wondering what this would mean for all of us.

Feeling guilty and helpless and hopeless but full of hope and promise because no matter what This Ended Up Being – his what is wrong and what is delayed thing – it was still also simply our life and the same little boy that carries my heart and my future. The same little boy who is Light.

So when it comes to St. Patrick’s Day, this year, I’ll celebrate by helping my now five-year-old make a leprechaun trap, per his kindergarten’s project. I’ll fondly remember green beer as festive and as party but I’ll also know that green beer is just beer with food coloring. I’ll realize how far we’ve come and how far we still have and I’ll laugh with my little boy and his funny little leprechaun trap that may mean he’s still not following directions. I’ll know that he’s still behind and I’ll know that that’s okay. Whether we find the pot of gold under a rainbow this year, or spend the holiday wiping pee from the seat is irrelevant.

We do, however, wish you the happiest of St. Patrick’s Days next week.

***

This has been a Finish the Sentence Friday prompt, where writers and bloggers come together in community to share thoughts on a single sentence. This weeks is “When it comes to St. Patrick’s Day, I…”

Your co-hosts, along with me, your always-host (Kristi at Finding Ninee) are:

Kelly from Just Typikel and

Lisa from The Meaning of Me

Are you a writer or blogger who would like info on upcoming sentences or want to co-host a linkup? Join our Facebook group!

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  • Dana - Tucker has come so far… and so have you. I’ve had the privilege of watching both of you (if only through my computer) grow and love and support for the past two years, and that’s better than a green beer any day.March 12, 2015 – 10:09 pmReplyCancel

    • Kristi Campbell - Thanks Dana! He really has come such a long long way. It’s pretty amazing when I look back to how hard it was for him to concentrate for just 30 seconds. And aw to it being better than a green beer (and wow 2 years has flown!!).March 13, 2015 – 7:18 pmReplyCancel

  • Allie - Oh Kristi. Are you ready for this? Our evaluation was St. Patrick’s Day week, too. We got our diagnosis on March 14th, 2003. Oh, and we (the U.S.) went to war – for real, a few days later. I also remember the hearing evaluation – the first one he failed, and then second when I had to take him to a hospital, and I prayed he was hearing impaired. How sad it that? And stupid. I am so glad he can hear me now:). We must catch up soon@!March 12, 2015 – 10:15 pmReplyCancel

    • Kristi Campbell - Wow Allie!!! Really? How weird is that and I can totally relate to the hoping that they are hearing impaired because if not – what IS this thing that makes them seem to not hear us?? I’m glad that Tucker passed, too… And yes, let’s catch up!March 13, 2015 – 9:02 pmReplyCancel

  • Kimberly - Oh that face…I can see the anxiety in his face. Tucker is incredible. You are incredible. I love that you are using your space to reach out to those who are in your shoes, and to those, like me, who don’t know but want to understand. Your journey is helping so many. Love you. Green beer and corn beef xoxoxMarch 12, 2015 – 11:33 pmReplyCancel

    • Kristi Campbell - Aw Kim, if you could see the video. He has a complete break down because we asked him to touch dad’s ear, which is how therapy started. Poor guy. Totally heartbreaking and awful. Thanks tho love for your sweet words and for wanting to understand. I feel the same about your words – and how you’ve opened up PTSD and depression for me. So thank YOU.March 13, 2015 – 9:11 pmReplyCancel

  • Lisa @ The Meaning of Me - Wow, Kristi, that is one heck of a post. Your family is amazing. You have strength beyond measure. That poor little face – oh how I know that look!
    Happy St. Patrick’s Day to you – no matter how you spend it. Just watch out for the green beer! You’ll see why in my post.
    *jig jig jig*March 12, 2015 – 11:44 pmReplyCancel

    • Kristi Campbell - Not amazing or strong Lisa, just doing what we do here same as all of us and yeah, sorry to read that you know that face. Poor kids. And happy St. Patrick’s Day to you and your husband and Zilla!!! haha to the green beer 😉March 13, 2015 – 9:28 pmReplyCancel

  • Mike - I’ve never gone out on St Patrick’s Day. Just never had any interest and also I was working 99% of the time.

    Kristi, my gut cringed WITH you when I read, “It’s NOT just a speech delay.” I would have been angry too. That the light of my life could even remotely have anything wrong with him. AND that anyone, especially a Dr, would tell me so. Tucker is Light in every aspect and please tell him I’m still holding out for that mac and cheese guy date with him! Btw…every time I visit here is the pot of gold at the end of rainbow. You, my friend, are the place in folks hearts where dreams come true 🙂March 13, 2015 – 1:38 amReplyCancel

    • Kristi Campbell - You’ve NEVER gone out on St. Patrick’s Day?? Mike!!! One of my best was in New Orlean’s. Oh man, maybe I should have written about that. Oh wait, I have already!! And if I triple-dog-dare you to go out on this one, will you???
      And yeah, the whole thing with the news. It was scary and maddening and thank you for getting it! He’s got you on his calendar for Mac n Cheese whenever all of our paths cross! Also BEST COMMENT ever. Thank you for your words and your support and your love. It is so so appreciated. Truly.March 13, 2015 – 9:30 pmReplyCancel

  • KeAnne - I loved Bennigans. My husband and I were just reminiscing about that place last weekend. Hugs, Kristi, and give T a big kiss. Between infertility & evaluations, I know too well how insensitive doctors can be.March 13, 2015 – 3:15 amReplyCancel

    • Kristi Campbell - Bennigans was awesome! I still miss their chicken quesadillas and awesome happy hours! Sorry too that you know how insensitive doctors can be. Sigh. And hugs. Big ones.March 13, 2015 – 9:31 pmReplyCancel

  • Katy @ Experienced Bad Mom - What resonated with me was this: “I’ll realize how far we’ve come and how far we still have and I’ll laugh with my little boy and his funny little leprechaun trap that may mean he’s still not following directions. I’ll know that he’s still behind and I’ll know that that’s okay.” I’m happy that you can find the positive, the hope, and that you’re always moving forward and sharing that here for others to be encouraged!March 13, 2015 – 7:27 amReplyCancel

    • Kristi Campbell - Aw thanks Katy! Also I love your name. If Tucker had been a girl, he was going to be Chloe or Katy. 🙂 Here’s to finding the positive!March 13, 2015 – 10:43 pmReplyCancel

  • Nina - I think realizing and appreciating (in yourself) how far you have come while being realistic about how far you have to go is the very best place to be as a state of mind.March 13, 2015 – 7:39 amReplyCancel

    • Kristi Campbell - Thanks, Nina. I think you’re right that seeing how far we’ve all come is the biggest part of it all.March 13, 2015 – 10:47 pmReplyCancel

  • My Inner Chick - **But early intervention and special needs evaluations are not about what the kids CAN do – they’re about what they’re NOT doing**

    this is TRUE, but it shouldn’t be like this.

    I work in an autism room, and I believe all the students are brilliant, geniuses, & that their brains work differently (That’s All).

    If they cannot do something, which the “outside” world assumes they should, SO WHAT?

    They can do many other things that blow my freaking nylons off!

    xxx love from MN.March 13, 2015 – 7:52 amReplyCancel

    • Kristi Campbell - I agree. It should NOT be like this. Love that your nylons get blown off. xoxo so much from here Kim.March 13, 2015 – 10:52 pmReplyCancel

  • Kenya G. Johnson - It’s amazing how a day can trigger an associated meaning. I can imagine you look at the photo each year with as much hope as you had in the moment, because he has come a long ways hasn’t he. I’m not asking, I’m just making an statement from observation of stories and videos you’ve shared over the years. I am as certain that there will be no pee just as there will be no pot of gold – and I mean that in the most optimistic/pessimistic way 😉March 13, 2015 – 8:52 amReplyCancel

    • Kristi Campbell - Um. After reading YOUR amazing post about how a day triggered a memory, well, yes. It really is, isn’t it??? And he has come such a long long way, truly. It’s actually a little humbling to remember that he used to not be able to sit for 30 seconds and touch his daddy’s ear. How he cried so much over that. haha to there being no pee and no pot of gold! There will (sigh) be a leprechaun trap though. And thanks, Kenya. You’re so awesome.March 13, 2015 – 10:54 pmReplyCancel

  • Kerri - UGH being told the evaluation results sucks, it is the day you remember being told your child was not perfect and you saying YES they are perfect, they just don’t fit the perfect mold. Tucker has come so far. Why? Because you took those evaluations and determined to defy their limitations. Rock on with green beer my friendMarch 13, 2015 – 9:10 amReplyCancel

    • Kristi Campbell - YES Kerri. Ugh to all of that. I mean, you already know what you know but it sucks to have somebody make it feel like it’s a “bad thing” or something when it’s really NOT. It just is and it’s scary but it’s still your kid who is beyond awesome. Here’s to green beer. Also I was saying “Patty” until I read your post. Um. yeah. xoMarch 13, 2015 – 10:56 pmReplyCancel

  • Katia - He is light and so are you and the way you write just makes me live through your experiences, assume them and internalize them. It breaks my heart to think that the vulnerability of any parent experiencing uncertainty would not be taken into consideration and that life changing words would be uttered in less kindness than expected. I think, though, that a person who expects kindness is one who most likely spreads it. I know that you do and I love this sentence for so many reasons, kindness being one of them: “Realizing that he’ll never catch up is scary and realizing that it doesn’t truly matter whether he does or not is freeing. All of it scary and freeing and also just life and just us and just Just.”March 13, 2015 – 10:05 amReplyCancel

    • Kristi Campbell - Oh Katia, you always always know the best way into my brain and my heart and I thank you for getting it and for raising amazing boys who will love and accept my son as he is – no matter what. That’s pretty powerful and amazing and a testament to you as a person and as a mom. Thank you. Thank you too for your own perspectives that I’d also never have known without your voice. Immigrating to another country where there are cultural and language barriers, working at home, working full-time out of home, the combinations, your own business. YOU amaze me all of the time and I feel blessed to know you.March 13, 2015 – 11:03 pmReplyCancel

  • Lisa @ Golden Spoons - You know what makes me feel really sad and guilty? That when I used to be the one doing the evaluations, I didn’t have kids and I didn’t have the perspective of being a mom and all the emotions that come along with it. Or, maybe just that your blog (or one like it) didn’t exist then so that I could fully comprehend how it felt for them – how hard it was for them to hear what I had to tell them; how those few minutes I spent with their chid was not totally representative of who their child was and what he/she could do. I just wish I had known all this back then so that I could have been a little more compassionate and understanding. That’s what was going through my head as I read this, because you have a way – a wonderful way – of making others really feel it.

    Good luck with the leprechaun trap and Happy St. Patty’s to you!March 13, 2015 – 12:41 pmReplyCancel

    • Kristi Campbell - Lisa Lisa Lisa (I can hear my dad in that and that’s not as bad as it may seem). Of COURSE you didn’t know. How could you? It was your job to bear the news and if anybody should feel regret, its your supervisors who never taught that and the ones here too. It’s an underpaid and under acknowledged job and so of COURSE it’s flawed. It’s also awesome because your heart is big and amazing and I am positive that you were kinder than you remember – that your mom heart has skewed it. Also? People like me needed to hear those words from an expert. I was completely in denial, and often times, still am. So thank you for your service to doing it and thank you for seeing a bigger picture now. I’m sorry though that I made you doubt you. And hugs.March 13, 2015 – 11:08 pmReplyCancel

  • Kim - I love that this year St. Patrick’s Day will be enjoyed – your son is so cute. That picture of him is sweet – I don’t like doing things on demand either!!! He will touch his dad’s ear when he wants to I bet!!!March 13, 2015 – 7:04 pmReplyCancel

    • Kristi Campbell - LOL thanks Kim. He did touch it, eventually… but man was it hard for him when we started the therapy!March 13, 2015 – 11:13 pmReplyCancel

  • Emily - I can still recall those early intervention evaluations as if they were yesterday. They are traumatizing, no question about it. I may have told you this once already, but I distinctly remember one of the evaluators saying to me about my non-verbal child, almost matter-of-factly (in other words, not too kindly): “Your son may never be able to talk.” Oh how I wish I could march my Big Dude into her office today and say, “guess you were wrong, bi-atch.” Anyway, I know those evaluations can be haunting, but I hope you realize that you and Tucker are already light years beyond what anyone may have said or predicted and there is NO LIMIT to where you both can go. I plan to toast to you and your little man with some green beer this year!March 13, 2015 – 9:20 pmReplyCancel

    • Kristi Campbell - UGH I hate hate hate that somebody had the balls to say “Your son may never be able to talk.” WTF. People are stupid and I hope you DO march him in and let her know that he talks and can talk to GIRLS!!! And yeah, I am pretty surprised by where Tucker is (and where I am) and thank you so much. Your advice over the past couple of years has been priceless and meaningful and helpful and THANK YOU). I’ll toast you and your little man and middle man and big man and biggest man right back with some green beer, Emily!March 13, 2015 – 11:17 pmReplyCancel

  • Roshni - You’ve all come a long way and I’m so glad he’s enjoying kindergarten so much! Hope you all have a fun St Patrick’s Day!March 13, 2015 – 10:22 pmReplyCancel

    • Kristi Campbell - We have come such a long way and thank you Roshni! I’m so glad he’s loving kindergarten too… Happy St. Patrick’s Day to you and Big A and Little A!March 14, 2015 – 10:47 pmReplyCancel

  • Marcia @ Menopausal Mother - Awwww…Kristi, this post just makes me want to hug you so hard. It almost seems surreal to me when I look back on the St. Patrick’s days of my youth. They were great times for sure, but I’m happy just to spend it at home now with my family. I’m betting you are, too. XOMarch 14, 2015 – 12:24 amReplyCancel

    • Kristi Campbell - Thanks Marcia. And yeah, I’m happy to spend mine at home this year with family too. 🙂March 14, 2015 – 10:51 pmReplyCancel

  • Chris Carter - I just kept thinking “Look how far Tucker has come, since then!” Oh, those scary early days of diagnoses and the ‘what ifs’- I remember mine with Cass. Different reasons, same fear.

    I remember Cass screaming so hard during therapy, that they finally decided she had sensory integration disorder or some nonsense because the PT said she has never seen a baby cry so hard for so long- and they evaluated her for OT. Which we then went to in addition to the PT. Little did I know, that was only the beginning of the nightmare. Sigh…

    But somehow you come through it and out of it and keep learning as you go that things WILL be okay: Because you realize that each turns brings more hope, change, and strength than you ever thought you had, yes?

    That’s what I see here. XOMarch 14, 2015 – 12:59 amReplyCancel

    • Kristi Campbell - Aw Chris, he has come SO SO FAR. And I know that you get the fright from the early days with Cass. Sigh. So sorry that they thought OT would help when it was just pain and not breathing. We do get through though somehow don’t we? With the help of one another and the community and the love and the sharing and the hope. Mostly the love though and thank you.March 14, 2015 – 10:57 pmReplyCancel

  • Scott - i really don’t understand the fascination with St. Patrick’s Day. No one (that I know, anyhow) actually celebrates their Irish heritage. It’s just an excuse to get drunk. Do you really need an excuse to get drunk? I don’t…March 14, 2015 – 7:55 amReplyCancel

    • Kristi Campbell - Although maybe, an excuse to get drunk is welcome when we need it? I dunno. But yeah.March 14, 2015 – 10:57 pmReplyCancel

  • Elizabeth - I love how you say evaluations are about what are kids are not doing, not what they can do. I think one of my biggest frustrations is that professionals have such a hard time after the evaluation making the transition from “not doing” to “can do” in developing therapies. The not do should only be a starting point and yet for some professionals they appear to be stuck there.March 14, 2015 – 12:47 pmReplyCancel

    • Kristi Campbell - The whole what they can’t do thing is such a huge problem I think because you’re right – the teachers and therapists get stuck there, and parents deserve the hope of how it gets better with therapy!March 14, 2015 – 11:08 pmReplyCancel

  • Tamara - You’ve both come so far, and sometimes the silliest parts of a holiday will make you remember what used to be. At least for me.
    You enjoy those leprechaun traps!! And maybe throw in some green eggs or something. With natural food coloring? I don’t know what kids are doing these days.March 14, 2015 – 6:59 pmReplyCancel

    • Kristi Campbell - Thanks, Tamara! We made the Leprechaun trap tonight and Tucker had better ideas than I did 🙂 And um green eggs. Ok. 😉March 14, 2015 – 11:08 pmReplyCancel

  • Nicki - “All of it scary and freeing and also just life and just us and just Just.”
    You and your little boy have come so far, together… the perfect travel companions.
    Um, what is a leprechaun trap??March 15, 2015 – 3:14 amReplyCancel

    • Kristi Campbell - Thank you for your sweet words as always, Nicki! A leprechaun trap is a box that lures the mischievous little dudes in with gold or promise of it and then traps him. We went to Michael’s and got a bunch of stuff – Tucker actually conceptualized it himself which is awesome. I was going to have the lid fall down (propped up with a straw or whatever) but he wanted to cut a hole in the lid and put a paper over it so that the leprechaun would fall in when he walked across the paper – I’ll post photos on FB. 🙂March 15, 2015 – 2:18 pmReplyCancel

      • Nicki - I love hearing how into it Tucker is… although it seems a bit odd to encourage entrapment lol. The leprechauns sound cute. I have a soft spot for cheeky, naughty faces 😉
        Can’t wait to see those photos!March 15, 2015 – 11:25 pmReplyCancel

  • Michele @ A Storybook Life - Kristi, I learn so much from you every time I read one of your posts, and this one is no different. I love reading about Tucker — his light does jump right off the page (off the screen?), and I think it’s awesome how far you’ve come, together.

    But yeah, if you ever want to spill the beans on your New Orleans trip….I’m sure we’d all love to read that, too! 😉March 16, 2015 – 3:05 pmReplyCancel

    • Kristi Campbell - LOL Michele – I’ll spill the beans about New Orleans one of these days, I promise and thank you for the sweet comment!March 16, 2015 – 4:26 pmReplyCancel

  • Galit Breen - This is so beautiful because it’s so very raw and real. I feel lie we just sat down together and you opened up with all of the things you’ve meant to tell me but haven’t had a chance yet. Stunning. Truly.March 17, 2015 – 11:18 pmReplyCancel

    • Kristi Campbell - Aw Galit. What an amazingly comfortable comment. When you said that, I pictured us sitting down, too. Thank you for that.March 18, 2015 – 10:10 pmReplyCancel

  • Meredith - That picture is just heartbreaking! But Tucker has the best mama in the world for him, so it’s beautiful in a way to look back at the past and see that you made it through that difficult time. Great post!March 22, 2015 – 10:45 amReplyCancel

    • Kristi Campbell - It really is amazing to see how far he’s come. Sometimes I forget and remembering how we used to try to get him to just touch his dad’s ear… And thank you!March 22, 2015 – 11:15 amReplyCancel

  • Sarah - IEP meetings are never easy and hearing results are so hard! Results mean nothing! You both have come so far. Go Tucker! He’ll continue on his journey and continue to amaze you!March 23, 2015 – 11:51 amReplyCancel

    • Kristi Campbell - It IS hard to hear the results but you’re right – they don’t mean anything really. Thanks so much!March 25, 2015 – 11:13 amReplyCancel

  • Tarana Khan - Beautiful post, Kristi. I like how you started with your worries and fears, but ended on such a bright and positive note. Really made me feel that your son is truly incredible!March 23, 2015 – 2:02 pmReplyCancel

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