Thursday, January 6, 2011


Photo by Tracy Grace Photography (dot com)

I'm frozen. 

I can do nothing until this post comes out of my head, because it keeps bobbing around my brain and the more I think about it, the more thoughts come flying toward it... this blob of information, thoughts, feelings, that need to get purged onto my blog.

I'm sad.  There, I said it again...  Sad, because John Michael has so much to say, and is really trying to say words to communicate, and sometimes I just don't get it. 

Here's a recent conversation between John Michael and myself from last night...

"Yes, John Michael?"
"neh neh"
"A horse?  Yes, a horse says "nay nay"".
He throws his head back and says, "NO!"
"Mom! Mom!"
"Yes, John Michael, what is it, Son?"
"neh neh!"
"Do you mean airplane, like you saw in the book?" 
"NO!" [tears are forming]
"Can you show me or point?"
"Awh!" and he walks away frustrated.

We both end up frustrated, because he wants to tell me something on his mind, and it's not coming out in a way I understand.

Doug feels the same way. 

I know it's a phase, but it could be a long phase...  My friends tell me that speech in kids with Ds often takes off around 5 to 7 years of age.  Well, I understand, rationally, but it's hard sometimes when you can't understand your kid! 

On a positive note, John Michael has many, many (150 or so) words that I understand and that's EXCELLENT!  He understands most of what I say and usually answers with one to three words in reply.  It's those times in the car or at home when he has something on his mind and can't put the words together clearly.  So last night as I tucked him into bed, I talked to him assuming he could understand every. single. word. I. was. saying. 

I stroked his cheek with my fingers and, choking back tears, told him...

"John Michael... Mommy loves you very much and I'm so proud of you.  I know you can understand so much of what I say to you, so I want you to know that I understand that you get sad when Mommy doesn't understand a word or something you're trying to tell me.  I'm sad, too, and I know it's hard to say the words sometimes.  But we'll just keep trying and we'll get it.  OK?"

I left the room crying, just as I am right now...  Softly, but the pain is there.

I am so darned proud of this boy and sometimes it pains me to know how much he will struggle in life.  Luke is a constant reminder of how a typical baby develops and hits his milestones without even blinking twice.  So, it's just a short phase I'm in.

Doug and I talked to his speech therapist today and she said that JM being frustrated is a good sign.  I tell you, that actually lifted my spirit hearing that.  She said that it shows that he has a desire to communicate and just isn't processing the words quickly enough.  She is going to start using a PECS (Picture Exchange Communication System) aid to help bridge the gap for a bit.  It's a board of pictures of words he's familiar with and he can point to the picture, for example, if he's trying to say airplane and I'm just not getting it.  He occasionally uses signs, but has really dropped his signs.  He does remember them, though, because he will say the word when I sign something to him. 

Finally, the photo, above, really hit me emotionally last night.  When I first saw it, I thought it was cute to see the kids running in circles around Doug and I.  That's really how we feel many days at this stage in our family life.  But last night, I saw the photo in a new way... a way that made me cry again.  I saw the three older kids running so fast that their bodies are blurred, and there is John Michael, in focus, not able to keep up... being "slow".  Today, seeing it again with new eyes, and reflecting on it more, I think I prefer John Michael's pace... bringing us into the slower lane, enjoying the small things in life and living in focus... 

Then, out of the blue, John Michael says to all of us in the car... "love you, kee kee (Nic)"  "love you, deddah"  "love you, nanna"  "love you, Looo"  "love you, Mom"  "love you, Dadda" and all the pain and tears lift and it's a beautiful day with our very sweet, beautiful boy.


  1. This made me cry- I can just imagine how frustrating and heartwrenching that must be. I know I am going to have lots of questions for you as Lily gets older... I am taking notes for the future whenever I read your blog. HUGS to that precious boy of yours.

  2. I totally understand. We are in the same spot with Rustin. He has so many words that are so clear but than he just starts gabbing and we have no idea what he is saying and I'm like What? I don't know what i"m suppose to do just say yes I understand. I hope these gabs starts really forming soon. We are thankful for the words he does have and the signs is uses but your right some times we are just sad because he is really trying to tell us something.

  3. A beautiful post, Monica. Thank you for sharing your feelings with us. I love to hear that JM has so many words, even when he can't find the right one now and again. He'll get there. Big hugs, my friend.

  4. Oh, my goodness! You are an amazing mom and have the sweetest little boy. Crying here.....thank you for sharing your beautiful heart!

  5. Tears are streaming down my face right now! I have worried about that myself and although we are not near that stage yet, I hope it will come some day. JM is doing amazing and I love reading about all the things he does! He is so sweet and I'm sure that he did understand every word that you said to him last night.

    I love your comment about the photo too! There is something to be said about taking life a little slower! I've been thankful for Sweet Pea for that very reason myself!


  6. Oh Monica, I know that has to be so hard but sounds like you've got a plan! Now, onto the photo, wow, never looked at it like that when I first saw it but wow, just wow! He is totally in focus and yes, you can look at it as he is "slow" but then also look at it as this is how we should be! In focus, slow down, enjoy life! John Michael is such a blessing!!! This photo is truly beautiful!!

  7. I am sure it is so frustrating for both of you...I am so glad that the ST thinks this is a good sign! John Michael is amazing and what a great picture! and your description is very thought provoking...I am not looking forward to this part of Maddie's development...I had tears throughout your post and cannot imagine when it is my reality...smiles

  8. This may sound strange but this is one of the sweetest posts I've ever read. I can feel your sadness, your joy and your love and it's pretty incredible. We are not at this stage yet but we struggle with speech too. Lucas is 21 months with no words. He knows signs but that is all. There doesn't seem to be a connection between sound and speech with him. I am so worried constantly looking for that "connection" with him. It sounds to me that John Michael is doing very well with speech and I agree that his frustration is a good sign. And as for the photo, it's quite beautiful and I love the idea of a focused pace, enjoying the small things.

  9. monica I know this is hard, trust me I go through the same thing with W now. He knows what he wants to say but it wont come out right. We dont do signs much anymore but when we get "stuck" on a word I do ask him to show me a sign (of what he is telling me) and that usually works. Love your perspective on the picture and I think it is a precious shot

  10. Though Emily is so young we aren't quite where you are...I can already see signs of it happening with her. At just 19 months she always knows exactly what she wants and sadly a lot of times I don't have a clue and it just results in her sucking on her little fingers and pouting and me frusterated. I know it's not fair to compare but my firstborn could communicate his basic needs and wants through words by the time he was 18 months old, granted he was on the early end with speech and still is...but I can't help but notice it already. John Michael is such a beautiful boy and I hope this phase passes quickly and I think your ST is right because if he desires to communicate well, then he will push himself in that area and that is a good thing!

  11. Monica...I loved this post. When Patrick was a little guy (probably JM's age) there was a book on the bestseller list called, "In Praise of Slowness". Every single time I went into the bookstore and saw it prominently displayed I would burst out smiling from ear to ear. YES! Slowness has its beauty and its own kind of perfection. I've never contemplated the "focus" component but it is so true.

    Patrick has an ability to focus his compassion, his love and his exuberance like nobody I have ever known. His pace of life is truly one of his greatest gifts to me and I'm grateful that in your sadness you already know its beauty.

    As for the technical part of speech, I can speak to you for quite a while about what Patrick's goddess of a speech teacher has done to help him gain the clarity and the ability to speak so well. It can happen. One thing that surprised me but now makes so much sense...learning to read was a HUGE boost to his verbal language. All of that visual support really helped him. Great post!

  12. PS Your pic at the top of your header could win a photo contest...hilarious!

  13. What an awesome straight-from the heart post. So, so glad JM does get frustrated, because that shows ambition/desdire there, he wants to communicate, that is HUGE, monica!! Glad you guys are going to try PECS. Often used in the ASD world, it is a great tool for ANY situation.

  14. You are not alone!! I felt your pain as I read this. I've been there! I have cried in front of Beth as she walks away frustrated in my lack of understanding. I see the dissapointment in her eyes and my heart aches. Really aches. I don't want to scare you but it hasn't ended for us. (Beth is 26.) We still have moments when I'm just not understanding what she's trying to say. Especially over the phone, oh my word that's the worst! But hang in there. Beth has become much more patient with us. :)
    I know one day John Michael will be as patient with you as you are with him.

  15. What a beautiful post!♥
    I truly enjoyed each and EVERY word written...

  16. I'm sorry you're sad Monica. Life can be filled with frustrations for all of us, even adorable little three year old boys :). When I cannot understand Erin, she now instantly grabs my hand and "shows" me what it is she wants to say, by pointing or signing, or at least directing me to something that will give me a clue. She is so patient with us. But, with that technique, I have to say that 99% of the time, she is successful in getting her message across. I tell everyone that if they ever want to win at charades, get her on your team! She's awesome at it. LOL I remember that we started noticing this issue more when she turned three. Now, at 3.5, it is better. Dr. McDonald, of Communication Partners, has some great ideas. Blessings and hugs, Kris

  17. Now, this made me cry too. We just started the same phase, that Joshua gets more and more frustrated when i can´t understand him.
    Christine & Joshua

  18. Okay... tears are flowing this morning. Although Justin will be 3 in May... all he can say is "mom." I am so proud that he is finally making a few sounds... but I totally understand. It is just heart breaking that we can't fully understand their needs... then in return, see them get upset. I'm right there with ya... Hope things get better my friend!

  19. This post made me cry a little too...Monica, I think you are an amazing woman and a wonderful Mother.

  20. This made me cry and for so many reasons! I'm sad for you and for JM...I can feel the frustration you both must have been feeling. I deal with this almost everyday with Landon, but usually he can show me what he wants or we eventually work it out, but not always! The difference is once we figure it out Landon learns the new word and we move on.

    My biggest worry with Sutter has always been language...above all other milestones language has always been my concern! Maybe it's because I hear the cute, funny things that come out of Landon's mouth on a daily basis and I know it won't be like that with Sutter....and that makes me sad. I try not to think about it too much, knowing that Sutter will have his own ways of making us laugh, but this post hit home!

    Want to know what I noticed about that and your husband are both looking at JM! The other kids are running JM is looking at something that caught his eye and the two of you are totally focused on him....LOVE! :)

  21. Oh, Monica, this gave me chills and brought tears to my eyes. You are such an awesome mom, and he's a truly amazing little boy. Bridging that gap is so hard when it comes to communication, but he'll get there! PECS sounds like a great idea since he's dropped so many signs. But, remember, the fact that he's dropped those signs in favor of speech is HUGE!!!! ((hugs))

  22. Loved this post Monica. Although Mia's speech has really taken off, there are still many times I struggle to understand her. She will often take my face in her little hands to focus my eyes on her and repeat her sentence very slowly for me. I totally agree with your tactic of having JM show you what he is talking about. I do this with Mia too. It's important to make sure that they know what they have to say is meaningful.
    I've gotten extra speech therapy from Sac State for two semesters now. It's provided by grad students and monitored by credentialed speech therapists. If you ever want more info on this, please let me know. Take Care.

  23. Sobs here...big, big sobs. We aren't as far along on this journey as you are, but I already see the frustration in Lily sometimes. I know she understands so much.

    I like Wren's interpretation of your photo. (((HUGS)))

  24. This brings tears for me too. Just this afternoon I was reading Early Communication Skills in children with DS while Alayna napped and read a chapter on this very topic. It made me stop and think about her communication with us and others.
    Thankful for your ST that brought in the positive perspective!
    And then tears again for JM's conversation in the car. Oh I can't wait for that day when Alayna says I love you to us.
    I so enjoy reading your blog. Thanks!

  25. We're in the same boat of communication frustration. Matthew and I have many days like that too. He understands so much but the speech just isn't clear enough yet. **HUGS**

  26. Hi JM! I'm Ty!

    I can't wait to meetcha!

    I just wanted you to know I get what you're feeling when your Mommy can't understand what you're trying to tell still happens to me, too! Is it something like this?


    Then I try to show Mom or act out what I'm trying to say (sound effects are always a fun bonus hehehe)

    I want to let you in on a little secret, dude...

    One day I betcha you'll wake up and feel a little funny, kinda bright & shiny inside, like a lightbulb has been turned on inside of you & you can't stop talking! Not even if you tried! You've been waiting so long to get the right words to come out, so why not let 'em all fly out in one day!?!?

    Weird, huh? I know, just wait, just wait...
    Then your Mommy is going to do all sorts of weird & embarrassing things like jump up & down, hug you, scream, cry, hug you some more, giggle for no reason, stuff like that.

    But the best part is you won't be able to wipe the smile off of your Mommy's face no matter how hard you scrub. It's pretty silly, really. But her smile will make you smile, too. And how bad can that be, really? Plus you can cause a little extra ruckus & not get totally busted for it! Bonus!

  27. Hallo Moni,
    Dein Post rührt mich zu Tränen, denn ich weiß so genau, wie Du Dich gefühlt hast - mir bricht es auch manchmal das Herz , wenn ich sehe das Carlos es frustriert und traurig macht, nicht von mir verstanden zu werden. Wir lernen mehr und mehr Gebärden und die Situationen werden weniger. Du bist großartig, weißt Du das? Ich habe so eine Hochachtung vor Dir und vor dem was Du leistest. John Michael hat eine ganz wunderbare Familie - ich staune und freue mich sehr ab und zu ein bischen von Eurem Leben mitzukriegen. Hoffentlich treffen sich die beiden kleinen Cousins bald mal. Alles Liebe und eine feste Umarmung sendet Dir