Thursday, July 29, 2010

frustrated by developmental delays



I am frustrated. Frustrated that Chubbs is going to be six months next week and there are a lot of milestones that she isn't hitting yet that she should be. If I get one more email from BabyCenter saying "Your baby should not be__________ this week" I think I might scream. I know that she is supposed to be developmentally delayed, but I see other babies with Down Syndrome who are ahead of her as well and I panic. I know I shouldn't compare her with other babies, but it is hard not to. I have had long conversation with Addison's PT and OT about where she is, and they both say because of her heart surgery and oxygen needs she might be even more delayed. My competitive side reared its ugly head and wanted to argue with them...No, how could that be?

My three siblings and I crawled by six months and walked by eight months. Growing up, I always assumed that my children would do the same. This is killing me to think that my baby might not walk for years. I see how determined she is and I push her every day as we work through different PT exercises. If only my will power could make her do these things faster, she would already be running (away from me...probably...)

I started really thinking about this when I got a call from Addison's case worker and PT this morning as they scheduled two six month evaluation appointments to see where she is at. Up to now I have just been taking it a day at a time, but all of a sudden, she is going to be measured against other babies her age and it makes me panic. What if she is found wanting?
I love Addison so much that it kills me even to admit that this bothers me. How do I continue appreciating her just for who she is without constantly having the comparison between her and other babies? How do I not let this bother me? I go on facebook and I see my friend's babies who were born months after Addison, accomplishing milestones that she still can't touch. ARGHHH. Does this feeling ever go away? Has anyone already had this appointment and is it as bad as I am thinking it will be?

12 comments:

  1. Deanna...I certainly don't want to take away from how your are feeling as I know that those feelings are very real and I also don't want to tell you how to feel. I can only tell you how I felt at that time. Ella was my third child so I probably would have been easier on her anyway. It seems that we always expect the most from our first born. In your case, Addison is your first born, right? So naturally you will expect more from her, typical or not. The key is to truly NOT CARE and NOT COMPARE. The good news is that she will do everything eventually. The "when" really doesn't matter. Ella didn't sit up until 9 months, crawl until 15 1/2 months and still isn't walking unassisted at 28 months. It doesn't bother me a bit!! Again, being a seasoned mom, I understand how crazy life is once your child walks so I have actually learned to relish the fact that Ella is a baby longer than other kids. I think that I am lucky because everyone always wishes their kids would stay babies longer. There are always going to be Ds kids that will do things earlier than yours. About half of the kiddos Ella's age that I know of are walking and about half aren't. I just know that she will do it eventually. And who knows, maybe Addison will be more verbal like Ella is and a little slower with her gross motor movement. Hang in there....if you allow yourself to wait on her, you will feel much better, I promise!!

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  2. Stop getting those Baby Center emails! I had a hard time sometimes if K wasn't doing the things she "should" be doing or things other kids were doing. (darn our competitiveness, right?) :) Don't add another "voice"; just unsubscribe.
    Secondly, enjoy what she's doing now and be proud of her for it! You said last week that she accomplished all of her goals for 4 the next months. Yay, Addison!

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  3. I know I haven't experienced the same circumstances that you have, Deanna, but I have watched Addison (through your blog) all these months, and I think she is doing fantastic! Look how hard she works to knock the mirror over with her head. Look how strong her legs are when she is bouncing her little heart out in her bouncy seat. Look how determined she is to get that nasal cannula out of her nose. Look how aggressively she attacks a bottle of formula! Look how happy she is! I see Addison as a determined, hard working, go-getter! She is an overcomer! It may take her a little longer to do things than it takes other babies, but Addison WILL DO all of those things! She has two wonderful coaches to help her to accomplish those goals-her loving mom and dad. Try to focus on all of Addison's abundant accomplishments! And Addison's accomplishments are your accomplishments! They are the result of the hard work and determination of BOTH of you! You go girls!

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  4. I have to say Deanna I honestly think little Addison is doing SO awesome!! And DO take in account that she has had surgery and is on oxygen...her little body has had to work harder just to survive, she has needed all the energy she could muster for that.
    And I soooo know how you feel! I went through that feeling just last month when I realized Russell had turned 7 months and he wasnt really doing much...but then you know what, all of the sudden he just started really going, really accomplishing lots and gaining so much strength. Give it time...I know its hard, but just give it time. And by the way, I hate admitting it to, but it still stings my heart a tiny bit when I see other babies younger than Russell with Ds doing so much more....but it only lasts a minute and then I am just happy Russell is doing as good as he is. Its funny cause just tonight Brad and I were talking about how Russell may not be walking by next summer, he will only be a year and a half by then...and it makes me a little sad...we all have those moments, I dont think one ever really gets over them as fast as they would like.
    Addison is a little fighter, and she is so strong, and in no time she will be reaching all kinds of milestones :)

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  5. you guys are all so right. my momentary pity party is over. i am so thankful for what addison can do (like breathe and eat without her mic-key). maybe to encourage myself i should actually read my own blog (-: thank you for the encouraging comments! and denise, i love what you said about enjoying the fact that other people wish that their kids would stay babies longer. i like that. i am going to try to think about it that way-

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  6. Every comment on here...I just am overwhelmed at the timely encouragement and wisdom of your friends and cheerleaders. They each said something so extremely profound, and it got me thinking a lot about a system that grades on external check points. You and Aaron are going to encourage her to excel as she can, and knowing what I know about your little Addison, she will give it every thing she has! She is courageous. And though courage is not graded on tests, that is an amazing quality few children (or adults for that matter) ever achieve.

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  7. we have ours on tuesday...im secretly scared to death....i don't even know if i want to hear the results....because i so know exactly how you are feeling....i do the same thing with camden.... there are things that he is so great with but then there are other things that i wonder if he will ever get to...and i try and try but he shows no interest in some things....and i have to remind myself that he will do everything eventually...but it's all on his time schedule...i can just show him how... up to now we have been telling ourselves he is so great...and hoping that he is....and i know that we should just think that anyway...because he is...but those test results scare me...and i can't help it....so i know how you feel....even though addison and cam might be working on different delays...i still totally understand....and truthfully i wonder if these fears will ever go away? i guess it's just part of this game we are playing now.... :) i'm here for you...addison IS doing great....and remember, she will be able to do everything that every other kid can do, maybe not at the same time, but she will.

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  8. We had our 6mo IFSP a few weeks back; I built it up in my head so much that I was a nervous wreck and you know what....it wasn't that bad! Addison is doing amazing considering all her little body had been through in the last 6 months and she will continue to get stronger each day!

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  9. I know this isn't the same thing, but none of my kids crawled by 6 months. It was around 9 months for all of them. And Jessica didn't even walk until 22 months. And they didn't have other major things to overcome like breathing, eating, and major surgery. Addison's an amazingly strong little girl, and as others have said, she will accomplish those milestones. When they're ready, they're ready. Don't stress yourself out thinking that it's up to you to "make" her do it.

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  10. Hi Deanna,
    Your most recent blog on Developmental Delays hit a cord with me. When Bekah was starting to talk there was a little boy, her age, who spoke in paragraphs. She was saying stuff like, "Me Betah" meaning "Me Bekah" and "Go in tar" - meaning "Go in car" - we had to translate for her. I struggled horribly over her delayed speech. I think with the first child, it's especially difficult to have delayed development. I knew this would be hard for you - and am praying for you. I wish I could say something to make things easier for you - Bekah, of course, did turn out great and I know Addison will too! Just at the time - there was so much uncertainity and no guarantees.....
    I love you and am very proud of you!

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  11. Hi - from Dan Larson
    Thanks to Dr. Rachel Larson, my cousin, for pointing me to this. Our hearts go out to you, and we are praying for you. We know, kind of, what you are going through. God knows and WILL guide you one day at a time. You may remember that we have an autistic son, among the other two sons. That has been hard for us, of course I am speaking for myself and I am sure Dorathy has a 'womans' viewpoint also. Remember that God gives special children to special people. I know that this is very trite, but it is true. I know that we weren't perfect parents, but we are well blessed. God bless you both very much.

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  12. I did a post recently (last week?) on comparisons and while they can be hard, I've tried to use what other kids are doing as a way to see what Claire has coming up next. But even with that, I'm getting impatient for her to sit up. :)

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