DownSyn Forum

[Solveig]

I've been trying to dig through old posts to find what I believe was written as a letter from a mother of a child with special needs, apologizing for forgetting regular stuff because she has so many other things on her mind. I'm not even sure who posted it, but think it might be Leah?? Not sure when, but a pretty long time ago... :S

I'm kind of in a situation right now that reminds me of the essence of that letter, and would have LOVED to pass it on to Bene's teachers...

Help, anyone?

Leah, was that your post back then as I think it was, or someone else's?

_________________
Mom to:
Jesper 07/23/95 (stepson)
Hanne Torill 06/06/98 (daughter)
Benedikte 04/14/00 DS (daughter)
Mads & Emil 07/05/00 (stepsons)
Svein Atle 05/13/03 (son)

[lespring]

It is not even ringing vague bells for me, but that doesn't mean I didn't post it. LOL

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

[violettesmom]

Can't help you specifically, but there are a number of things like that on this post over on CafeMom - maybe it is one of them? (there are 4 pages worth of stuff.)

http://www.cafemom.com/group/1152/forums/read/1062122/Inspirational_Stories_Poems_and_Quotes?next=1#replies

_________________

[LinMac]

Solveig
You have me think hard but nothing comes to mind!
Will you post a link if you find it?

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)


First Communion Day

[Emdad]

I think that this whole thread is hilariously ironic, actually. We can't remember a post about not remembering.
HAPPY FRIDAY!!!!!

[seansmom]

This post reminds me of Tuesday. I was going to the gym and before I went my contractor asked me to pick up some lino which I needed to strap to the roof of my car and to return something at another store. I said ok and toodled off. I came out of the gym and realized I forgot to bring the rope to tie the lino down and I forgot the invoice to make a return at the other store. On the way home my daughter calls and tells me I forgot to send her money for lunch. Ack!

I constantly forget stuff. It's really annoying. Way too much on my mind. Lol

_________________
Kellie Mom to Sean 10 yrs with DS and Carly 14 yrs

[Solveig]

It was a post written as a letter from a special needs mom apologizing about forgetting to return notes and such, just regular school stuff, and explaining why; because she was too busy running to IEP meetings, doctors appointments and dealing with OT, PT, ST etc. Kind of written so eloquently it was basically telling the teacher to go to hell in such nice wording he or she would be looking forward to the trip

One of Bene's teachers gave me a hard time about forgetting to return a note this week. I was too busy working late, trying to catch up at work for being away for a project meeting with the school district for a project group planning a junior high school programme for kids with special needs in our county, going to an IEP meeting that lasted 1 hour longer than planned, seeing the oral surgeon doing her braces and explaining to her behavioral psyocologist over the phone about her newest issues that need adjustment work and schedule a meeting with him.
What I really wanted to do, was show up in class, give that teacher her note and tell her where to shove it... Then I remembered that post about that letter, thinking it was Leah (or maybe it was Jane?? Or Larkin's mom??) who posted it. I figured if I could find it, it would be a little more lady-like to give her a copy of it than giving in to my "shove it!!!!"-impulse

So....... I can't find the post I can't remember what was called, or who posted it. Probably a preview of downsyn old-timers' threads in the future: "I can't remember, need to vent" There will probably by that time, be a special section for our kids, trying to support each other on issues that come along with having DS and dealing with old parents who can't remember sh**.

Me thinks it's time for a glass of wine. It IS Friday night over here, after all

_________________
Mom to:
Jesper 07/23/95 (stepson)
Hanne Torill 06/06/98 (daughter)
Benedikte 04/14/00 DS (daughter)
Mads & Emil 07/05/00 (stepsons)
Svein Atle 05/13/03 (son)

[LinMac]

Quote:

I think that this whole thread is hilariously ironic, actually. We can't remember a post about not remembering. HAPPY FRIDAY!!!!!

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)


First Communion Day

[lespring]

I hear very faint bells going off in the back of my head. Very faint. It's possible I posted it. hmmm

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

[Solveig]

The good news: I FOUND IT!!!!!!
The bad news: Because of the turmoil it caused, it was moved to the trash can - obviously, someone took it personally.

I'm moving out on a limb here, and daring to copy and paste it into this thread. I was right, too, Leah - YOU wrote it!
I guess that means I don't have Alzheimer's. Or, given the fact that this thing was posted back in 2005, maybe I do....

Here goes:

Quote:

I've heard them talk in the staff lounge. You know who they are.... You know who you are! You've talked about the parent of a child with a disability who has become uninvolved in their child's education. No wonder that child can't succeed! Afterall, his parents do nothing for him! They never turn forms in on time. They forget to sign permission slips, and God forbid there should be homework, 'cuz you know it's not going to get done anyway! When you do see this parent, (I'm going to follow the law of averages and say it's the mom) she the looks like she just rolled out of bed. HHmmmmm I wonder if you really know? I wonder if you REALLY have a clue what it took to get that child to school? I'm not talking about just that morning, but for the past several years! Lets first take the mom of a typical child. They fly through infancy and toddlerhood, hardly noticing that their child does 10 new things a day. Yes, they notice the major milestones...When the baby sat up, crawled, etc. But most of the time they can't tell you the other very little things, like the day their baby discovered his hands, or the day he started cruising furniture. Then the child his 3 or so and can start dressing himself. (Do you know how many moms of kids who are perfectly capable, dress their children? It's sad!) and the very next day it seems they're 5 and headed for school. Mom now moves into a new phase of her life, particularly if this is her youngest child. Now, lets turn the tables a bit. My baby had Down Syndrome, but you could substitute a number of diagnosis in it's place. She spent the first 6 weeks in the NICU, with me and the rest of my 5 kids making the 120 mile round trip every day so I could 1) see her and 2) hopefully get her to breastfeed. When she came home, our life took on a very unusual kind of normal. It is the "normal" assumed by all parents in the US who bring home a new baby like Angela. It's called Early Intervention, and when run right can give babies with "issues" a fantastic boost in their development. The goal is to keep kids from falling behind, at least not very far. The sad thing about Early Intervention is you have to be a marathon runner to participate. Oh, did I mention participation is mandatory? When you were a new mom, weather it was your first or you had others before, did you like people coming to your house? You may not have minded it, but with Early Intervention it's almost every day! That means almost every day you have to have your house clean! There is speech, PT, OT, Special Ed, D/HH, they all come for an hour per week. Now throw in (in our case) and average of 3 doctor visits per week. These are not just visits to the pediatrician (who the heck is that anyway?) but specialists. Yes, its the ists that run our life. Cardiologist, Gastroenterologist, Endochrinologist, Pulmonologist, Orthopedist, Opthalmologist, Anesthesiologist, Radiolgist, Neruologist, and then some others like a surgeon, pediatrician, etc. In my daughter's first three months of life, she saw every one of these specialists on a regular basis. By one year of age, she had seen some of them far too many times for any tiny baby! There are also meetings. Oh the meetings! IFSP's they're called, and they cause us parents much distress! I bet you have no idea how upset we become when an assessment of our child's skills has just been handed to us. We may not cry right then and there. Some of use have gotten good at hiding our tears. Instead we wait until later, alone in the bathroom (if we're lucky enough to have a lock on the door!) and we let the tears fall. We read the reports again and again. Not because we were in denial before, because honestly, we know exactly every little thing our child can and cannot do, but because seeing it in writing makes it real! Seeing in writing that our child is 2 years behind in one area or another is like getting punched in the stomach, and then whacked over the head with a 2x4, only it takes longer to recover. So the Early Intervention schedule keeps up the pace until age 3 when that little tiny being goes off, on a bus, to school! School at age 3! On a bus! However, the other junk..all the ists, did not change. They're still there, it's just that now I have to call someone to say my child won't be in school today because today we're seeing of of the ists. LOL Some parents choose to work outside the home at this time, because they are under the false impression that things will slow down a bit. Silly them. Along comes Kindergarten. The same specialists are still in their place, the only difference is the IFSP has now turned to an IEP and is more scary, because now this is real school! Now we have a new problem. We have think of things like mainstreaming, inclusion, resource rooms, FAPE. It seems that we spend a lot of energy fighting for the things our child needs. Unfortunately in the US, you're in the minority if your child is automatically included in the mainstream classroom. Isn't that sad? Did I mention in all of this there are other children who need me too? As my friend Michelle so wonderfully said it, "They're hanging on for dear life in the shadow of her." Because yes, it's hard not to get lost among the ists and the schools, and the meetings, and the surgeries, and the occasional nap. So when your field trip slip doesn't come back, or homework isn't done, don't assume the parent is uninvolved. Assume, instead, that she is exhausted and just plain didn't have the energy to remember one seemingly small detail. PS. My daughter's teacher just called. Seems I forgot to put her almost invisible hearing aids on her this morning. Go figure Written by Leah Spring info@downcues.com [Edited by lespring on 10-28-2005 at 09:26 PM

]

_________________
Mom to:
Jesper 07/23/95 (stepson)
Hanne Torill 06/06/98 (daughter)
Benedikte 04/14/00 DS (daughter)
Mads & Emil 07/05/00 (stepsons)
Svein Atle 05/13/03 (son)

[lespring]

Wow...you're good! How did that cause controversy?????? And wow, in 2005 I hardly knew anything! ROFL Never mind. It's probably a discussion that doesn't have to happen all over again. And...can I edit that thing now, cuz I just added TWO MORE kids, and more "ists" than I can count. If I was sucking at getting forms done before, well....send me to bad mom jail now because I can guarantee this did NOT improve.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

[Emdad]

Just goes to show:
1> What amazing Moms you both are
2> Your memories are not "gone", they're just being rendered in the cuisinart of this life.
3> You are doing more than just persevering.

"Insanity is hereditary - you get it from your children" - Sam Levinson

[LinMac]

Solveig
Thanks for posting it! It's very good Leah!

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)


First Communion Day

[seansmom]

I love that! You should have sent it to a Parenting magazine to let the other half know what our lives are like!

_________________
Kellie Mom to Sean 10 yrs with DS and Carly 14 yrs

[Solveig]

Emdad wrote:

Just goes to show: 1> What amazing Moms you both are 2> Your memories are not "gone", they're just being rendered in the cuisinart of this life. 3> You are doing more than just persevering. "Insanity is hereditary - you get it from your children" - Sam Levinson

That is sweet, Jeff It's a good kind of crazy

_________________
Mom to:
Jesper 07/23/95 (stepson)
Hanne Torill 06/06/98 (daughter)
Benedikte 04/14/00 DS (daughter)
Mads & Emil 07/05/00 (stepsons)
Svein Atle 05/13/03 (son)