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Old 01-10-2013, 12:50 PM   #1
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Need to decompress a little

I just need to decompress a little from our meeting with DS's Growth & Development team today.

We know that he is delayed, we know that he almost certainly has CP he's basically been diagnosed by his Pediatrician, OT, PT, EI team and the G&D clinic at the children's hospital we are just waiting on his MRI to officially confirm his diagnosis on paper and tell us where he lies.

Today though at his appointment the specialist said he is way behind in his motor skills and mentally. The SLP came in and talked with us a bit but since we are on the wait list for EI at the local treatment center they are going to contact our team and talk with them about next steps.

The specialist said he's just at the 6 month level and he's 1 corrected or 17 months actual. She made me feel like it's my fault she was telling me I need to talk to him more and make sure I am taking care of his mental needs as well as his physical.

I just wasn't ready to hear this I guess, I have been hoping his case of CP would be more on the mild side.

Sorry I'm just bummed.

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Old 01-10-2013, 01:28 PM   #2
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Re: Need to decompress a little

So sorry the meeting went poorly mama. CP can be hard. If they have motor issues it can make it difficult to tell where they lie cognitively, if they have trouble speaking and pointing, etc, it's hard to know. I hope things get better for you!
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Old 01-10-2013, 01:37 PM   #3
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Re: Need to decompress a little

I'm not following; What exactly do you mean talk to him more? Like during play? As in "I am putting the blue block in the red basket now you help me take the blue block out of the red basket" type play? If the above is what you meant then this type of descriptive play is pretty standard protocol for children with speech delays. They mean you just need to talk to him more during play, as well as regular day type stuff like "oh here Mommy goes opening the front door." Also describing verbally the pictures they see in books is helpful vs just reading the words on the page. All the above examples are just parenting tools to help them pick up language. Most parents don't do this naturally which is why they make the recommendation but the recommendation doesn't mean you are a bad parent.

Now after saying that I wasn't there and really can't get a real sense of how she came across to you. If you don't like her then request someone else next time. I have found out the hard way a bad therapist can do more damage then no therapy at all.

I am sorry you are having such a rough time. Being a special needs parent means you are constantly on an emotional roller coaster; right now you are down but next week or next month he will make a baby step in development and you will be on the crest of the hill over joyed. Getting through the low times is tough just know eventually you will get to a point where things will go better.
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Old 01-10-2013, 02:41 PM   #4
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Re: Need to decompress a little

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Originally Posted by mekat View Post
I'm not following; What exactly do you mean talk to him more? Like during play? As in "I am putting the blue block in the red basket now you help me take the blue block out of the red basket" type play? If the above is what you meant then this type of descriptive play is pretty standard protocol for children with speech delays. They mean you just need to talk to him more during play, as well as regular day type stuff like "oh here Mommy goes opening the front door." Also describing verbally the pictures they see in books is helpful vs just reading the words on the page. All the above examples are just parenting tools to help them pick up language. Most parents don't do this naturally which is why they make the recommendation but the recommendation doesn't mean you are a bad parent.
Yes this is what she was suggesting. She is not a therapist but a doctor and I think she was having a bad day, she was getting angry with the front receptionist when we went in because she couldn't find a patient for over 20 mins because they were in the wrong waiting room or something.

She was a bit frazzled.

I think her suggestion was because we have been so focused on his growth and getting him to gain weight that it would be easy to forget about his other development and I think she just wanted us to make sure we were equally focused on the mental aspects of growth too.

This whole year has been a roller coaster I am all too familiar with the being high then low. It's like we take 1 step forward and two steps back.

I just have to keep reminding myself how far he has come, I mean he has come so far for someone who started at 1.5lbs. Really what more could we ask, we have to give him a bit of a break.
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Old 01-10-2013, 05:19 PM   #5
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Re: Need to decompress a little

Take a deep breath!
I have CP. I was born 5 week earlier than your little. I was never, ever supposed to walk or talk, or even eat on my own. This expectation kept being set over & over for my Mom until I was three.
I'm 25, with a full education, taking college classes online, have lived on my own since I was 18, have a full time job, a [almost] wife & we'll be having babies this year.
I was at a 6 month bracket when I was over a year old. I had more therapies than my mom knew how to manage, I had IEPs, I was misdiagnosed SO MANY times, my mom was given so many "she won't...." lectures she thought I was going to need to be shipped off to a care home.

He is still so little, with a brain and body that is playing catch up.
All you can do is the best you can. Be his cheer leader, his coach, his voice. Just because "they" say he can't or won't doesn't make it true.
CP is VERY, VERY tricky. In 25 years of meeting people with CP I have never met any 2 people with the same limitations. They can tell you what they *THINK* his future looks like based on what they have seen before, but that doesn't mean it is written in stone for him.
Keep your chin up mama. He loves you & I promise you that no matter what happens in his life he will always love & appreciate everything you do.
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Old 01-10-2013, 07:02 PM   #6
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Re: Need to decompress a little

You got me crying.

THANK YOU I REALLY REALLY needed that more than you could know.

I'm just tired of fighting, tired of everything being a fight for him. I feel like we get excited because he is doing something new, like this weekend he JUST started to stand for a couple seconds at the ottoman when we stand him at it and then we get brought back to earth by therapists or doctors with not so great news.

The not so great news just makes me feel guilty even more and like it's all my fault that he has to go through all of this in the first place. Which I know isn't true but it's hard not to think like that when I am his mama.


Quote:
Originally Posted by justsamma View Post
Take a deep breath!
I have CP. I was born 5 week earlier than your little. I was never, ever supposed to walk or talk, or even eat on my own. This expectation kept being set over & over for my Mom until I was three.
I'm 25, with a full education, taking college classes online, have lived on my own since I was 18, have a full time job, a [almost] wife & we'll be having babies this year.
I was at a 6 month bracket when I was over a year old. I had more therapies than my mom knew how to manage, I had IEPs, I was misdiagnosed SO MANY times, my mom was given so many "she won't...." lectures she thought I was going to need to be shipped off to a care home.

He is still so little, with a brain and body that is playing catch up.
All you can do is the best you can. Be his cheer leader, his coach, his voice. Just because "they" say he can't or won't doesn't make it true.
CP is VERY, VERY tricky. In 25 years of meeting people with CP I have never met any 2 people with the same limitations. They can tell you what they *THINK* his future looks like based on what they have seen before, but that doesn't mean it is written in stone for him.
Keep your chin up mama. He loves you & I promise you that no matter what happens in his life he will always love & appreciate everything you do.
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Old 01-10-2013, 07:23 PM   #7
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Re: Need to decompress a little

hugs mama. The fact that you are taking him to all these appointments and doing so much for him shows how lucky he is to have you as his mama.
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Old 01-11-2013, 08:43 PM   #8
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Re: Need to decompress a little

I can totally see how a brusk attitude can bring you down. One of the things about seeing doctors all the time is you are going to see the worst docs and even see the good docs at their worst. I even came close to smacking one once with my knitting needle (I didn't but gracious I really wanted too). His office made a huge medical mistake which caused more suffering for my son, didn't even apologize and then said "Oh by the way I am a size medium in case you want to knit me a sweater." My hubby at the time (now ex) took one look at my face and very quickly ushered him out of the hospital room before I could react.
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Old 01-11-2013, 11:24 PM   #9
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Re: Need to decompress a little

Mama--just remember--he is still the same little guy that he was yesterday, before you knew all this. Sometimes, it is so easy to get caught up in the medical diagnosis that you forget that the little guy didn't change a bit. You did. At least for me, I have to tell myself that on a regular basis. The labels don't define him.

This story means a lot to me. When I'm having a rough time, it kinda puts things back into the right perspective for me. I hope maybe it will help you as much as it does me.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
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Old 01-12-2013, 12:07 AM   #10
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Re: Need to decompress a little

Quote:
Originally Posted by luvsviola View Post
Mama--just remember--he is still the same little guy that he was yesterday, before you knew all this. Sometimes, it is so easy to get caught up in the medical diagnosis that you forget that the little guy didn't change a bit. You did. At least for me, I have to tell myself that on a regular basis. The labels don't define him.

This story means a lot to me. When I'm having a rough time, it kinda puts things back into the right perspective for me. I hope maybe it will help you as much as it does me.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Oh thank you so much for sharing this... made me cry.
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