Cognitive Delays and Mama's Grief (Vent) - Mothering Forums
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#1 of 9 Old 07-25-2006, 04:56 AM - Thread Starter
 
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ds is globally delayed in his development. He is at high risk for major cognitive delays because of genetics, but it is too early in his life (he's 15 months) to know what pieces of who he is have to do with delays and what are just related to his interest levels and unique development, etc....and on top of that it is too early to sort out the fine points of what is cognitive, what is neurological, etc.

I could not love ds more. I am so proud he is my son. I adore every ounce of him. I knew ds was at risk for a cognitive disability before I chose to foster-adopt him. I knew that this would not impact my love for him, and it hasn't. He is the apple of my eye. I'm sure you all understand that. I also feel confident that even if he does have a cognitive disability, that his life can be fulfilling and filled with love and good things.

I do worry, though, about how to make sure he has the opportunity for a bright future. My biggest fear is that he will live the same kind of lives that his birthparents must live due to their disabilities...that he will know mostly his limits and not his strengths. That life will be harder for him than we would wish on our greatest advesaries. That he will have to struggle at every turn. That he will find himself lost in the world. That he will experience lots of lonliness. I know it is too early to look at him with anything but a sense of infinite possiblities for the future, but since he has scored low on standardized developmental tests since the time we first had him tested at 5 months, it is hard not to feel some anxiety about what the future could hold.

I feel a sense of sadness sometimes about all this. It comes up at all kinds of moments. Like today, I had him at the aquarium and was noticing how attentive and engaged the other kids his age were...how interested they were in these creatures of the sea that they saw in the water. My ds really didn't notice them. His jaw hung loose, as it does, and he just drooled and looked somewhat bored by the whole thing. He was happier when I let him get down and run around, but he showed no awareness of the particular enviornment he was in. It made me wonder, and feel a twinge of sadness that I couldn't be sharing the excitement of these sea creatures with my son like the other moms were with their children about his same age. Or there was the time, a couple weeks ago, when some relatives were visiting and my brother said (in a non judgemental way, but still), that ds seemed a "little slow" and it made me long to hear someone affirm his "normalcy."

I often wish that if ds was delayed, that it could be an obvious, physical thing. I know this is probably way oversimplifying things, but I sometimes feel jealous of mothers whose kids have Down Syndrome because the world seems to accept disabilities that are obvious more readily than ones that become apparent only after conversation. At least that has been my experience with other kidos. And because language is a big issue in ds' life, I wish it was all a matter of hearing and not cognition. I long for my child to be deaf.

I hope I won't be judged for this. It's not how I feel all the time. It is just part of my "gut" response at times. And I guess I just hope I'm not alone.

I'm pro-adoption reform, but not anti-adoption.
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#2 of 9 Old 07-26-2006, 01:06 AM
 
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Originally Posted by Sierra
I often wish that if ds was delayed, that it could be an obvious, physical thing. I know this is probably way oversimplifying things, but I sometimes feel jealous of mothers whose kids have Down Syndrome because the world seems to accept disabilities that are obvious more readily than ones that become apparent only after conversation.

I've been thinking about this recently because ds always just looked like a big cute quiet baby but now that he is getting bigger, his differences are becoming more noticeable and we're getting the double takes and curious glances at some noises he'll make. It takes people longer to figure out what is different about this kid!

and don't worry - not too much judging goes on in this forum!
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#3 of 9 Old 07-26-2006, 01:15 AM
 
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I understand, mama. I really do.
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#4 of 9 Old 07-26-2006, 01:41 AM
 
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Originally Posted by Sierra
I do worry, though, about how to make sure he has the opportunity for a bright future. My biggest fear is that he will live the same kind of lives that his birthparents must live due to their disabilities...that he will know mostly his limits and not his strengths. That life will be harder for him than we would wish on our greatest advesaries. That he will have to struggle at every turn. That he will find himself lost in the world. That he will experience lots of lonliness. I know it is too early to look at him with anything but a sense of infinite possiblities for the future, but since he has scored low on standardized developmental tests since the time we first had him tested at 5 months, it is hard not to feel some anxiety about what the future could hold.
OK, lord knows I have an opinion about almost everything so here goes

First of all, your concern about your child ending up like his parents or being lonely out in the world as an adult, etc. etc.
Well, I think you should not worry about that in the least and here's why---
I used to worry about this same thing and I would see older kids with disabilities and adults who clearly were not given all the opportunities I wanted dd to have and I would see how they didn't fit in and all that.
Well, it turns out that being raised by a supportive parent/s is more important than anything else and makes all the difference. Lord knows my kid drives me nuts with her behavior and I still worry about a lot of stuff, but I DO NOT worry about her making her way in the world. I get compliments every day from people who talk about the confidence she has and how she does not see herself as less than anyone, etc. Well, guess what? That was our doing : (ya, I'm tootin' my own horn)

I've met other parents too who treat their kids like the awesome kids they are and do not dwell on the negative and don't allow their teachers or therapists or Dr's or their friends and family to either.

THIS IS WHAT REALLY MATTERS! and this is what is going to set your boy apart from his parents and the other kids who do not get to grow up being loved unconditionally and given every opportunity.

One of our friends who has CP always says that she wishes that we were her parents (even though she is older than us), because she was blamed for her parents financial problems, etc. and just in general was not loved for who she was.

I also have a friend who is in her early 40's who has CP and is non-verbal and she was raised the opposite way. She was given every opportunity (which says a lot since it was 30 years ago) and was loved unconditionally. She is the most confident person and is a huge advocate for herself. She is awesome.
I only wish my other friend had the same opportunities and could have the same confidence.

Anyway, quit worrying(yeah right ) How you parent will be the deciding factor and not how delayed your ds ends up being or anything else.

Me : , husband ,daughter Raven : 10-28-95 :
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#5 of 9 Old 07-26-2006, 01:53 AM
 
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Originally Posted by Sierra
I feel a sense of sadness sometimes about all this. It comes up at all kinds of moments. Like today, I had him at the aquarium and was noticing how attentive and engaged the other kids his age were...how interested they were in these creatures of the sea that they saw in the water. My ds really didn't notice them. His jaw hung loose, as it does, and he just drooled and looked somewhat bored by the whole thing. He was happier when I let him get down and run around, but he showed no awareness of the particular enviornment he was in. It made me wonder, and feel a twinge of sadness that I couldn't be sharing the excitement of these sea creatures with my son like the other moms were with their children about his same age. Or there was the time, a couple weeks ago, when some relatives were visiting and my brother said (in a non judgemental way, but still), that ds seemed a "little slow" and it made me long to hear someone affirm his "normalcy."
First of all no matter how well meaning, your brother will have to learn the proper language to describe what he wants to say...and saying something positive does go a long way.

The other thing about what you said and noticing the other mothers with their kids and how they were interacting.....this I'm afraid never goes away. I think it may get better or come and go, but there are always those moments when you wish your kid could be doing the things the other kids are doing. It can be hard sometimes when you have a friend with an "average" kid who goes on and on about their achievements or complains on and on about the littlest of things. Sometimes it is hard to not be jealous and it can be hard to be supportive of friends at certain moments. One of my closest friends who had her ds a couple months after I had my dd said to me (when they were about 12 or 14 months) that I was lucky that I didn't have to chase after dd all day. I didn't say anything but given that dd has paralysis from the waist down and is delayed in all areas...well, I thought that was really insensitive and really hurt my feelings. My first thought was "don't you think I would love to chase my kid around all day? and I'd be damn grateful too".

This is just a part of my life that I have accepted. Not in a way like I have accepted that I am going to be sad all the time, but I know that I will have moments like that, but I also know that a lot of the time I won't and that's just how it is.
(hope that's not too depressing)

Me : , husband ,daughter Raven : 10-28-95 :
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#6 of 9 Old 07-26-2006, 02:00 AM
 
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Quote:
Originally Posted by Sierra
I often wish that if ds was delayed, that it could be an obvious, physical thing. I know this is probably way oversimplifying things, but I sometimes feel jealous of mothers whose kids have Down Syndrome because the world seems to accept disabilities that are obvious more readily than ones that become apparent only after conversation. At least that has been my experience with other kidos. And because language is a big issue in ds' life, I wish it was all a matter of hearing and not cognition. I long for my child to be deaf.

I hope I won't be judged for this. It's not how I feel all the time. It is just part of my "gut" response at times. And I guess I just hope I'm not alone.
Can I just comment on this real quick --- it's a bit of a pet peeve of mine. I understand all the feelings you are going through right now and there's nothing wrong with anything you feel ....having said that I would just like to point out that as a parent who has a kid with an obvious disability; well we have it no better off because you may have people expecting more out of your kid, but my experience is that people with obvious disabilities get treated like they are stupid a lot of times and have trouble getting people to take them seriously. Also, my dd is small for her age so they also think she's a little kid. They talked baby talk to her until she was about 7 I think. It was horrible for her.

Anyway, my point is just that we all have things to deal with concerning how we are viewed by the public and I'm pretty sure that none of us have it any better than the next.
I have heard people say this a lot---about their kid looking so normal and wish they didn't sometimes.
It's a mixed bag either way -- bottom line is that sometimes it just sucks...people are just so clueless for the most part.
The good news is that most people do try to be kind.

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#7 of 9 Old 07-26-2006, 02:13 AM
 
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yeah I deal with this. actually right now DD is doing ~~okay~~ cognitively (of course, I freak out and work myself into panic attacks over the future anesthesias she faces....can't go there right now). But every other way, she's delayed. Luckily, she's also quite small for her age so no strangers think twice that she's not mobile or verbal.

honestly, I don't know how not to be crushed by it. I don't. Every day I try to make this all right in my mind and I can't. Helpful huh?

but seriously, I know I have to. And then I remind myself of the millions of people who are WAY WAY WAY worse off than I am, because One, I have a relatively healthy child, Two, I have access to great medical care and therapies.

and sometimes I tell myself this, "She had to be born into this world. So God gave her to you because he knew you'd grab the ball and run with it. Don't drop it now." (I'm not religious, dunno if you are, it's just something that works for me sometimes.) And I am so so so glad she is mine, and not someone else's who might not do everything possible in their power for this AWESOME kid. I wouldn't trade her for the world. I know you feel the same way about your son. I don't know how to feel good about it mama, but just because I can't feel good about IT, doesn't mean I'm not going to feel good about ME and HER.

DD1 7/13/05 DD2 9/20/10
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#8 of 9 Old 07-26-2006, 03:49 AM
 
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and sometimes I tell myself this, "She had to be born into this world. So God gave her to you because he knew you'd grab the ball and run with it. Don't drop it now." (I'm not religious, dunno if you are, it's just something that works for me sometimes.) And I am so so so glad she is mine, and not someone else's who might not do everything possible in their power for this AWESOME kid. I wouldn't trade her for the world. I know you feel the same way about your son. I don't know how to feel good about it mama, but just because I can't feel good about IT, doesn't mean I'm not going to feel good about ME and HER.
:
We also like to think that she chose us because she knew that we would do right by her. Like we have an important job to do and we have to focus on that.
(of course I'll be posting next month when dd has her surgery and recovery for a month---someone remind me of this then, OK?)

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#9 of 9 Old 08-01-2006, 04:50 AM - Thread Starter
 
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I am about to offline for the Month of August, but wanted to say before I go that I did read these posts and appreciated the time you took to write them. I will be giving this a lot of thought, I am sure.

Thank you.

~Sierra

I'm pro-adoption reform, but not anti-adoption.
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