Thursday, May 9, 2013

Sometimes I break....

Boo has had a bunch of appointments over the past two weeks. More of the same, she is doing great/keep doing what you are doing. The thing is, and here I am being selfish and a total nitwit, Boo hasn't 'evolved'.  What I mean to say is that yes, she has had a language explosion and she is doing great. I am not trying to minimize her gains at all. But when you look at the whole picture she is still in the 18m to 2Y developmentally.
 
Yes she has made gains, but she hasn't advanced. She seems "stuck" at this stage. I know I need to be patient and keep doing what I am doing. But if her developmental growth is starting to stagnate does that mean anything or is it that the gains are more noticeable at 6m old than they are at 4 & 1/2?
 
If we "judge" (seriously, my word of the freaking week) by the developmental scale for a 1-3YO: she can walk alone, but not run. Boo can kick a ball, but does not have awareness of self. She cannot find a hidden object 2-3 levels deep (what the hell?) but can if it is behind your hand. Does she play make believe? Again, no.
 
Then I (idiot that I am) looked up the 3-5 YO developmental scale. (file under what were you thinking?). Walks up and down stairs alternating feet, no but neither does my dad. Climbs well? Check! Bends over without falling, no but then neither do I. Understands his/hers, no. Matches an object to a picture, sometimes. Can take turns, sometimes (but both Allie & Hubs have trouble with that concept.
And let's not even put the whole potty training thing into the mix.


Okay, I know I should stop the pity party...but I feel so, I don't know...if down is the right word. The developmental doctor wanted Boo to start at-home services. At first I was like no way, when do I have time for that? But because she was so insistent that I arrange it, I called the services. Guess what Boo isn't eligible. Now I was ticked off that here the doctor wants her to have services and she can't get them. Of course, the fact that I didn't want them in the first place is totally irrelevant.
Gosh, I feel like a teenager. Not wanting something and then getting ticked that I didn't get it.
Anyway, I am sitting at home having a pity party for myself and totally mad at myself for having it. I know I should be happy that Boo is safe and healthy and home. She is not on a feeding tube, oxygen or sitting in a chair staring at the wall. Her issues are so minute compared to what other children are triumphing over.
But, seriously, sometimes it just gets tough to be the upbeat supermom.

26 comments:

  1. It does get tough sometimes, I know! And I'm not in your situation, but I can say that when I have days like this and just can't help feeling the way I do, no matter what I say to myself--it always helps to remember that tomorrow is a new day and will most likely bring me back to who I am, and that is the person that looks at the positive instead of the negative. Not that looking at the negative is wrong! We can't help but do that sometimes, and that's natural and okay. But just remember that you'll get back to "you" sometime soon, and it will all be put into perspective in a wonderful way again. Does this help at all? Keep on going, mama, because you sound like one tough, great lady!!

    ReplyDelete
    Replies
    1. Thanks, Shay. You are so right and it does help.

      Delete
  2. "But, seriously, sometimes it just gets tough to be the upbeat supermom." I think sometimes it is IMPOSSIBLE to be the upbeat supermom. It seems like all of us in blog land have had a really rough day today. Remember, your trials aren't diminished just because other people have it worse. Yes, of course it's always great to count our blessings and focus on what we have, but we need to respect our trials for what they are. Our suffering doesn't hurt less just because others' hurts more.

    I hope tomorrow is better. For all of us!

    ReplyDelete
  3. Kerri, you and Boo are amazing, and don't ever forget that. AMAZING. I read about Boo and I am in awe of her determination, her resiliency, her spirit.

    I know it must be difficult sometimes, and I feel for you. Sending lots of hugs!!!

    ReplyDelete
  4. Awww Kerri, I just wish I could hug you know! You know that I know exactly how you feel and that, excuse my french, is just crappy. Lots of love to you, dear friend!! xoxoxo

    ReplyDelete
  5. ((hugs)) Those developmental leaps really do slow down a bit after the first 2 years. But something I've discovered with Samantha, is that she stores stuff up and doesn't tell/show me she actually knows/can do it. Sometimes kids just wait for the right time. :-) Btw, why was she denied services?

    ReplyDelete
    Replies
    1. Because, get this, she doesn't have autism. The ONE freaking thing the child doesn't have. Sometimes it is enough to bang my own head against the wall.

      That is great to hear, though, about how Samantha seems to store up her gains.

      Delete
  6. Big hug to you. I read your posts and you are doing great. I do understand. Truly I do. My husband and I have adopted five times. All special needs/medically fragile children. I home school them. Although we have worked very very hard in homeschooling....my 18 year old is at a four or five year old level in cognitive functioning. My 11 year old is still doing and has been doing 1st grade stuff for the last four years. He cant seem to go any farther. sigh. My 13 year old and 10 year old are both doing 4th grade work and 2nd grade math. But my 16 year old....when he was young he was stuck in kidnergarden and 1st grade stuff for years.....when he turned 10 he literally went thru and up two grade in one year and then the next year did the same. Now at 16 he is stuck at the 6th grade level. I am just saying that I have learned a lot over the years. One of them being....children regardless of a huge amount of therapy (if you do normal parenting) are going to learn what they are capable regardless. I beat my head against the wall for years trying to teach telling time to my 11 year old because it was a goal of a therapist. One year my dad got us a clock that chimed on the hour and half hour. He in about three days learned to tell time. He would run back and forth between the digital clock on our oven and the one that chimed and compared what they looked like and literally was so interested in that chiming clock he learned. Let the rest of the world quote mile stones to me all day....I say as long as our children are clean, clothed, fed, loved and cherished each day for who they are and not who others think they should be...who cares? Not me and I haven't for years. I rejoice in every thing they learn but more so I rejoice in the blessing God gave me in them being my child. :) Your daughter is beautiful by the way!

    ReplyDelete
    Replies
    1. Thank you for the experiences you shared, it definitely helps.

      Delete
  7. I was going to say something similar to what Susan said. Sometimes YEARS go by when it seems like my boys don't make any progress and then they go through a cognitive growth spurt and just amaze me daily.

    I remember when Joe was little his SLP was hung up on his oral motor difficulties because he couldn't drink with a straw. I knew it wasn't oral motor but was in fact cognitive (he didn't understand that he was supposed to suck in). She had been working with him for months with no noticeable progress. I got him one of those cups with a built in straw on the side, tipped it and taught him in about 5 minutes what she had been working on for months.

    The point is just hang in there and try to enjoy what she can do and when she is ready, she will move forward.

    Julie

    ReplyDelete
    Replies
    1. Thanks, Julie! You are so right. Boo had the same issue with the straw. Too funny how that happens.

      Delete
  8. You need to have a pity party sometimes! Otherwise one day you will just explode!! Hugs!

    Love how your husband also has trouble sharing ;)

    ReplyDelete
    Replies
    1. Oh he totally does. He, the adult in the house, ate the last of the ice cream on Allie the other night!!

      Delete
  9. Aww, friend!!! <3 I wish you lived here because if you did, I'd drive over right now with wine and chocolate and hugs and understanding. I know what you mean about how, as our children get older, their delays seems more obvious. She IS making progress though. And something that a teacher told me about Tucker - sometimes there will be periods of time when it seems like there is no progress being made and they often lead to a big leap. So there's that.

    Still, I, too, have these days. And know also that although we ARE so so lucky compared to some, them having it harder does not lessen the pain we feel. It doesn't minimize our heartbreak. Yes, it reminds us to be grateful but we're still allowed to mourn the children we imagined we'd be raising.

    ReplyDelete
  10. As a former special educator, I can tell you with complete honesty (not just trying to make you feel better) that kids do NOT develop in a linear fashion. I have spent MANY, MANY hours agonizing about a student's lack of progress over a period of time, only to have them ALL OF THE SUDDEN make big strides. It can be discouraging, but it's like water smoothing the jagged edges of a stone. Really! Hang in there, Kerri! I'm routing for you and Boo! :)

    ReplyDelete
    Replies
    1. Can you please be a current special educator in my town? I could use you :)

      Delete
  11. Hey Kerri! Our pediatrician once threw away Silas' pediatric assessment in front of me at a check-up. It was one of those questionnaires designed to see where your kids fall on the scale, and she seemed to appreciate the ridiculousness of comparing Silas to other kids his age. I get how you feel for sure. But I'm guessing Boo has some amazing progress coming in her good old time.

    ReplyDelete
    Replies
    1. That sounds like the Pedi I have for the girls. I remember with Allie who still is not on the growth chart our Pedi saying, hey she just has her own height/weight measurements. As long as she grows a little we are fine with that. For some, crap, reason I have more trouble with Boo's progress. Completely unfair but completely true.

      Delete
  12. Kerri, it's okay to have a pity party. You're entitled to have one every once in a while. We all do! I remember when Bethany was finally well enough to come home, but not fully recovered, I kept asking everyone, "will she be able to do such and such by age 20?" (don't know why I picked age 20) No one would answer that question. Well at almost 15 I am pretty sure that even though she has come along way and achieved some huge gains there are many things that she probably still won't be doing at age 20! And it's Okay! Boo has a great mom! She's going to be okay too! Happy Mother's Day! I'd love for you to link this post up at Friendship Friday!

    ReplyDelete
    Replies
    1. You picked 20? Dear God, woman I picked Kindergarten! I will definitely link up with you on Friday. Thanks for the invite.

      Delete
  13. Kerri, completely normal to feel stuck yourself as well as your child being seemingly stuck. I can really to relate to super slow progress but in a way I remember every little thing Coop has achieved whereas with the other two I just blinked and missed it xx hang in there! Boo is ace so are you and maybe its the calm before the storm!

    ReplyDelete
    Replies
    1. Thanks, Bron. I know your Coop works so much more than Boo...

      Delete
  14. For what it's worth, I think you're totally justified in grieving, feeling frustrated, and yes: even feeling sorry for yourself and having a pity party every now and then. My kiddo is mostly "on track" developmentally, but there are some areas where he's still really behind, and that can definitely get discouraging and frustrating... even downright disappointing sometimes. Hang in there, mama! <3

    ReplyDelete

Thanks for stopping by and letting me know what you think!