Sunday, January 10, 2010

Expectations...

I was talking with a friend the other day and she asked how Bennett was doing. I told her I felt he was doing well and that all his therapists have commented on his good tone and how well he holds his tongue in and things like that. She said maybe he has a mild case of Down syndrome...don't I wish.


Without getting into a lengthy conversation, I agreed. Now if you are the person I was talking to, do not think you said anything wrong! Most people think that there are "milder" forms of Down syndrome but from all I've read it seems if you have it, you have it. You can't have a little Down syndrome or a lot, you just have it or you don't.


Now perhaps there are "higher functioning" and "lower functioning" individuals so to give my friend credit, she most likely meant this. Again, to my friend, please don't think you offended me in any way, you don't need to apologize because you said nothing wrong, it just got me thinking...


So for my family and friends and others that are not aware, I thought I'd share what the average age for some of the big physical milestones are for Down syndrome. It may surprise some people, probably most will be surprised that it may take that long to do some things, especially when you see the age range.


But I figure if my friends and family are informed and we stick to the Down syndrome milestone chart, we won't be disappointed or fearful that Bennett isn't reaching his milestones.


After all, Bennett does have Down syndrome and do I want him to be "higher functioning"?- You better believe I do, don't all parents? But that's out of my control. So where ever he is on the functioning spectrum I think it's important to still remember he has Down syndrome so let's not compare him to kids that don't. (Not saying that anyone ever has). {Besides, I'm the only one allowed to secretly do that-lol, just kidding-sorta;)!}


The average is the first number and the age range is the second set of numbers (blogger won't let me space it how I want):



Rolling: 8m, 4m-12m

Sitting, unassisted: 11m, 8.5m-15.5m

Crawls: 14m, 9m-19m

Pulls to stand: 15m, 9-26m

Stands alone: 18m, 12m-38m

Walks: 23m, 13m-48m

Runs: around 4 years


I won't bore you with some of the other cognitive and social milestones but the good news is that right now Bennett is staying pretty close to that first number in the "age-range" for that. However, for example, pulling to stand at 9 months isn't going to happen unless he has a major explosion in gross motor skills. But that's okay. He may be able to do some things early and he may do some things late, just like any other child.


I'm not saying my expectations are necessarily low for Bennett. I'm just saying I don't expect Bennett to do things other kids without DS are doing at exactly the same time. Now if he does, whoo-hoo!But I think it's healthy to have my expectations in check but to still push Bennett to be the best he can be.


And whether he's "higher-functioning" or "lower-functioning", well, I don't think we'll really know that for some time but we'll still love him just the same and expect him to challenge himself and do many if not all of the things his sisters do. I will not put any limitations on Bennett. I will expect him to do everything other little babies do, just on a different timeline...

and we'll call it...

Bennett's
very
own

timeline.

20 comments:

  1. I have heard of several people who were under the impression that you can have "a little Down Syndrome!" I too think they must mean higher or lower functioning!

    Just wait...your little guy will probably exceed your expectations in many areas of development...mine sure has! My Ricky amazes me every day with the things he does and says! He also has always had good muscle tone and this has caused him to be very athletic!

    Your little man is so handsome! Keep setting attainable but high goals for him...he'll amaze you as he reaches OR surpasses them!

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  2. I often get comments about Luke having a 'little touch' of Ds ;) I try to take it as a compliment, as people don't know what to say, or don't really know anyone with Ds, so are surprised at how capable he is.

    Love the cute photos!

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  3. We get that, too. And really, I'd rather hear that than not. "Expect the most, Accept the least" is our mantra.

    Bennett is such a gorgeous little man!

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  4. Bennett's very own timeline is going to be PERFECT! Seriously though, I have LOVED being able to just soak in every stage, and I'm sure it is something you have been able to really appreciate since you have older kids that probably flew through them lots faster.

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  5. I agree with Kenzee - because Joel has taken longer to reach certain milestones I have been able to enjoy each stage even more than when Caleb was little. There is also a lot of celebrating when Joel reaches a major milestone because we know how much work it took to get there!

    Bennett is doing really, really well and he is so blessed to have two amazing sisters to encourage him and motivate him.

    Love the pictures!

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  6. People say the same thing to me too. I think they think it will make us feel better. It doesn't really bother me. We know Mattie will reach her milestones when she is good and ready.
    Bennett is such a cutie! Love those chubby cheeks!

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  7. Love this post... Actually, I wrote about this during October's DS Awareness Month on my blog (http://caringriffith.blogspot.com/2009/10/life-with-extra-chromosome_10.html)

    I love your attitude -- our kiddos will do things when they're ready -- and whenever that is, we'll be there, ready to celebrate!!

    So glad to hear Bennett is doing so well! He's adorable!!

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  8. He is so cute!! I can't get over how perfect he is. I'm always amazed at the things he does.

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  9. My daughter Emily doesn't have down syndrome, she has a chromosome deletion, and is progressing at about the same speed as your son. {who his totally scrumptious by the way}.

    Anyway, after reading your post it got me thinking back to something that happened in the store the other day.

    Rewind: When I go to stores, or anywhere for that matter, I tote along a portable DVD player to occupy Emily. She has sensory issues and when she is in big places like that ....it is very upsetting to her. So...the DVD player sort of distracts her from that.

    When I got to the register to pay, there was a lady in front of me who noticed Emily's dvd player...she thought it was neat....after all we didnt have those things when we were little.

    And then she said: Wow, she's so lucky!

    Now I know she didn't mean anything by it. Quite frankly, I KNEW she was talking about how lucky Emily was to have such an amazing little toy to keep her happy.

    But.....in the back of my head when I heard those words SHE's LUCKY, all I was thinking was...... YA She's real lucky alright.

    She has to work a lot harder to do things that regular kids do, she can't talk yet, she may never have a drivers license or have her own children & quite possibly never live independently.

    Don't get me wrong.....we are SO very blessed to have Emily in our lives. I love her more than life!

    But Is it bad, for that ONE brief moment I was thinking to myself..........Ya, she's lucky alright.

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  10. I agree with Wendy--I posted awhile ago about the numbers--the amount of delay we were given and someone commented that they "Set expectations high, accept less, and enjoy the moment." Which I think really sums it all up.

    Bennett is adorable--really, how do you get anything done in the day? I think I would just want to snuggle him all the time. :)

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  11. I just ran across your blog. your son, Bennett is so handsome!

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  12. Bennett is sooooo CUTE and I think he is doing AWESOME. {{HUGS}} and Prayers forever. Great post !!
    Caroline

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  13. GREAT post!! :) Plus...I just love those pictures...I just wanna hug him and kiss his cheek!!

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  14. yes, I hear it all the time.."maybe it is a mild case" no harm meant, don't we wish it were true? The chart is great!!! Good to have my expectations in check!!! I am jealous, he looks like he has had a haircut. :) Parker still has about 20 strands on top in a "cupie doll" cut! He is SUCH an adorable little man!!!

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  15. In a very rare number of Down syndrome cases (about 1–2%), the original egg and sperm cells are completely normal. The problem occurs sometime shortly after fertilization; during the phase where cells are dividing rapidly. One cell divides abnormally, creating a line of cells with an extra chromosome 21. This form of genetic disorder is called a mosaic. The individual with this type of Down syndrome has two types of cells: those with 46 chromosomes (the normal number), and those with 47 chromosomes (as occurs in Down syndrome). Research has suggested that individuals with this type of mosaic form of Down syndrome have less severe signs and symptoms of the disorder. So a child can have more or less severe Down Syndrome symptoms.

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  16. This post is really helpful. We are just hitting the stage where we notice a delay, especially in Gross Motor development. I'm always feeling like I need to explain this to family and friends. Can I use your milestone chart for my blog?

    Thanks a ton for the effort.

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  17. I've told my older two boys(now 18 & 14) that there is nothing that Caleb (now 9) cannot do. He is going to climb that mountain...we may just have to take a different path..or walk the trail twice...but we will conquere the mountain. And then we all wind up at the same place!

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  18. Adrienne - I haven't seen pictures of him for a while, and OH MY!!! He is such a handsome little boy! How can he be this big already!

    I wrote on my blog about the same sort of thing a while back...

    http://yomammamamma.blogspot.com/2009/10/31-for-21-so-how-severe-is-it.html

    I'm so excited to be following you now!

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