This post will be all over the place I'm sure...But I think it will feel good to get some things off my chest.
So in no particular order...My confessions....
1. I am tired of thinking about Down syndrome.
The past few months I have felt a shift in the way I feel...It's almost like Down syndrome is phasing out of my life in a way...Or at least becoming less of a focus. Russell just seems so typical to me, so normal.
Russell is just Russell now...Ds has faded into the back ground.
Russell is just Russell now...Ds has faded into the back ground.
I will ALWAYS blog about Down syndrome because it is important to me...There will always be ups and downs for me...There will always be times I need to vent or talk about it...And I will do it on here because this is where (Besides my family) I have found my greatest support...But I find even when I post about Russell it's not even really Ds related, it's just a "what he's up to" type post.
When I started my blog it was mainly to sift through those powerful emotions I was struggling with after finding out Russell had Ds...Now I like blogging about our family in general. At the end of each year I print my blog out and the kids love flipping through it, it's a great family journal.
One of my good friends said the best thing to me the other day, she said...
When I started my blog it was mainly to sift through those powerful emotions I was struggling with after finding out Russell had Ds...Now I like blogging about our family in general. At the end of each year I print my blog out and the kids love flipping through it, it's a great family journal.
One of my good friends said the best thing to me the other day, she said...
"Your blog is called Our Little Chilli Tribe...Not my Ds son"
And that sums it up perfect for me!
2. I have been fighting off blogging about this for the past week...I promised myself I wouldn't bother wasting my time on something that is not really any of my business...But alas I cannot help it...It is eating away at me so here I go...
That book called "I live with Peter Pan"...It bugs me...I mean really bugs me.
Now I am all for someone writing their own book and publishing it...Sharing it with your friends and family...Whatever that's great.
But I just have to say if a book with that type of bullshit message ever, ever made it to our public school system or local Hospitals I would be outraged!!! The last thing I would ever want anyone to think about MY son is that he would "never grow up"...And that that is some how a charming and endearing way to describe him or others with Down syndrome.
But I just have to say if a book with that type of bullshit message ever, ever made it to our public school system or local Hospitals I would be outraged!!! The last thing I would ever want anyone to think about MY son is that he would "never grow up"...And that that is some how a charming and endearing way to describe him or others with Down syndrome.
There is nothing cute about that analogy.
I'll be damned if anyone dares compare my child to Peter Pan!
There I said it...And it made me feel better :)
Moving on...
Ok...here it is...The Big One...The one thing I hesitate to confess because once I say this I'm sure I will be considered a "Bad Ds Mom"'...But whatever, this is just the way I feel and I'm saying it...
3. I want to quit every single one of Russell's Therapies.
That's right... Every. Single. One.
I'm tired of it and I have been for a very, very, long time now.
For two years I have done every single thing I was told to...I followed every direction, every suggestion, every idea our Therapists have given us...And now I am done.
This is nothing personal against any of the women we have worked with. Russell has absolutely fantastic workers...But I do not want to do any more evaluations, any more sessions, any more goal setting or check ins or assessments. I don't want anyone coming over anymore to ask what we have been working on or checking our progress.
I'm done. I'm over it.
I'm done. I'm over it.
Now that's not to say that I don't think Russell needs any extra help with anything...Because I get that he does, I am fully aware that he has needs that "typical" kids don't.
I myself am very mindful of the things I need to work on with Russell, so its not like I just want to throw in the towel and let him end up however he will end up.
That's not what I am saying at all.
That's not what I am saying at all.
My point is merely that I feel confident in taking over my sons development myself.
That's all.
That's all.
The best information I have received has been from Moms who have older children. When I have a question about Russell's development, I ask. This is what I feel comfortable with. Getting ideas and tips from Moms who have actually walked the road before me has been the greatest thing ever!
I feel like I can gather information myself this way, I do not need weekly or monthly meetings and appointments to accomplish all this.
So I believe in the ideas and stuff in general, just not that it has to be done in a formal PT, OT, SP session or with someone watching my every move or charting Russell's progress.
I feel like I can gather information myself this way, I do not need weekly or monthly meetings and appointments to accomplish all this.
So I believe in the ideas and stuff in general, just not that it has to be done in a formal PT, OT, SP session or with someone watching my every move or charting Russell's progress.
I am tired of being in this rat race world of Down syndrome...I am tired of not being able to make a decision as simple as buying a damn cup for Russell without first asking everyone else what they use.
I don't even buy into that shit half the time anyway...Never did.
But when you find out your child has Down syndrome you are shaken to the core...You are scared and unsure...You want to do what everyone else is doing because you don't want to be the one who is doing it all wrong. Right?
That's how I felt anyway.
I don't even buy into that shit half the time anyway...Never did.
But when you find out your child has Down syndrome you are shaken to the core...You are scared and unsure...You want to do what everyone else is doing because you don't want to be the one who is doing it all wrong. Right?
That's how I felt anyway.
Well guess what...I have never owned a honey bear sippy cup, and low and behold Russell can drink from a straw! I have never watched a single signing time video and yet Russell can sign a ton of things...I never did treadmill training and Russell learned to walk...And I mention these things because these are the very things I for the longest time felt guilty about not doing with Russell.
I was worried for a long time that I didn't jump on any of these things...Now I am not.
Those things didn't interest me, I only wanted to do it cause everyone else was. And I am sick of feeling like that. So I'm done. I don't care what everyone else is doing anymore.
For the entire first year of Russell's life I beat myself up over his development...How much I was "working" with him...What more should I be doing...What toys were best and most educational...Teaching him proper movement, what was he allowed to do and what shouldn't he?
Was it my fault he wasn't doing this or that yet?
I drove myself crazy.
And I am done.
Those things didn't interest me, I only wanted to do it cause everyone else was. And I am sick of feeling like that. So I'm done. I don't care what everyone else is doing anymore.
For the entire first year of Russell's life I beat myself up over his development...How much I was "working" with him...What more should I be doing...What toys were best and most educational...Teaching him proper movement, what was he allowed to do and what shouldn't he?
Was it my fault he wasn't doing this or that yet?
I drove myself crazy.
And I am done.
Now I get that pretty much everyone reading this will disagree, and I am perfectly ok with that.
We all believe in different things. Some people believe in all the Therapies and that they are an absolute necessity...I do not.
I'm just not entirely sold on the whole Therapy thing. I cannot think of a single Therapy Russell has had where I learned anything so profound that we could not have done with out it.
Not one.
We all believe in different things. Some people believe in all the Therapies and that they are an absolute necessity...I do not.
I'm just not entirely sold on the whole Therapy thing. I cannot think of a single Therapy Russell has had where I learned anything so profound that we could not have done with out it.
Not one.
I am over treating Russell like he is a giant Down syndrome project, because that is what I have been doing for the past two years. (And I am speaking for myself here, not everyone else)
I don't care what anyone Else's kids are doing faster or better than Russell. I just don't care anymore.
I don't care what anyone Else's kids are doing faster or better than Russell. I just don't care anymore.
So there it is...That's how I have been feeling. And sometime in the very near future I will be opting out of Russell's Therapies for good. I will most likely speak to each one of them about this first though instead of just going cold turkey.
Now I am sure many of you have strong opinions on this...Many are probably gasping in horror right now.
And that's ok. To each his own, right?
And that's ok. To each his own, right?
Russell is MY son...I love him and want the very best for him. If I was learning anything of value in Russell's Therapies I would continue going...But I am not.
This doesn't mean that I myself will not be working with him, because I will be.
All I ask is that my opinion, whether you agree with it or not be respected.
Also please know that just because I do not feel Therapies are right for us anymore, I in no way would ever, EVER, think that every one should share my opinion. No one needs to defend their reasons for wanting to do Therapies to me.
What I have learned most from the Ds community is that we all do things differently...We all have different opinions...No one is right and no one is wrong. There is never just one way to do something.
Some of us are passionate about speaking PC, to others this is not a big deal and it doesn't bother them. Some of us are passionate about RR, others not so much. There are some who believe in the Vitamin Therapies, others don't. Some are all about every kind of Therapy possible as often as possible...Others are not.
The bottom line is this...
WE ALL LOVE OUR CHILDREN
We all want the best for our kids...But what is best for you and your family, may not be what I consider best for me and mine. And just because people choose to do things another way doesn't mean they love their child more or less than the person who chooses something different.
I did the Therapy thing for two years now...I just don't feel we are getting anything useful out of it anymore. Keep in mind I have also raised five other children, so I don't feel like a new Mom who needs direction.
I want to go back to trusting my instincts with Russell, and I am confident in doing so.
So there it is...Some of the stuff that has been irritating me lately. I do not mind at all if people disagree with me...But NO ONE better doubt that I love my son or that I do not want the very best for him or that I am not doing everything I can to make his life the very best it can be.
I just don't believe formal Therapy session are the only way to accomplish that goal.
This doesn't mean that I myself will not be working with him, because I will be.
All I ask is that my opinion, whether you agree with it or not be respected.
Also please know that just because I do not feel Therapies are right for us anymore, I in no way would ever, EVER, think that every one should share my opinion. No one needs to defend their reasons for wanting to do Therapies to me.
What I have learned most from the Ds community is that we all do things differently...We all have different opinions...No one is right and no one is wrong. There is never just one way to do something.
Some of us are passionate about speaking PC, to others this is not a big deal and it doesn't bother them. Some of us are passionate about RR, others not so much. There are some who believe in the Vitamin Therapies, others don't. Some are all about every kind of Therapy possible as often as possible...Others are not.
The bottom line is this...
WE ALL LOVE OUR CHILDREN
We all want the best for our kids...But what is best for you and your family, may not be what I consider best for me and mine. And just because people choose to do things another way doesn't mean they love their child more or less than the person who chooses something different.
I did the Therapy thing for two years now...I just don't feel we are getting anything useful out of it anymore. Keep in mind I have also raised five other children, so I don't feel like a new Mom who needs direction.
I want to go back to trusting my instincts with Russell, and I am confident in doing so.
So there it is...Some of the stuff that has been irritating me lately. I do not mind at all if people disagree with me...But NO ONE better doubt that I love my son or that I do not want the very best for him or that I am not doing everything I can to make his life the very best it can be.
I just don't believe formal Therapy session are the only way to accomplish that goal.
I, in no way, think you're a bad mom. You do whatever is necessary for your family, as a whole. Obviously whatever you're doing is working.
ReplyDeleteI love Liddy's two therapists, but more than likely in the coming months we'll be adding another one..and scheduling another appointment (regardless of whether we have to go anywhere or not) just seems overwhelming with our already extremely busy schedule. I just had to sit down and write out my weekly schedule for a class this week and OMG! How in the world I ever get anything done is beyond me! I think I'm lucky to have enough time to get any sleep!
I will add the new therapy in. Because right now, it's necessary. But in a year, who knows where we'll be? We may be in the same spot you are, saying we want out of the rat race.
I could care less that other kids, with or without DS, are more advanced than Liddy is. She is herself and that's good enough for me. The rest is just fluff that we will get to eventually, when she's ready. I still celebrate everyone else's kid's accomplishments because I understand that each of them is a BIG DEAL! I just don't beat myself up because we haven't made it there yet.
I love you girl. And sweet Russell too!! xoxoxoxo
You sound like a fantastic mom to me. While I'm not ready to drop every therapy yet, I have had these thoughts too. The most helpful things to me are the advice of other moms. And I don't do the 5 days a week therapy either. Most of it it just stuff I reinforce with her and focus on during our play time. Mostly the therapists are there to tell me I'm doing a good job. I don't want our lives to be all therapies. And I think she's doing fine.
ReplyDeleteRussell is obviously doing fine too. And I'm sure that if there is ever something that you think he needs professional assistance with, you will get it.
So bravo. There is a lot out there that I don't like. There are a lot of paths to choose. I find, even though I initially wanted to do "everything I could", that now I am picking and choosing. And I am way more a middle of the road kind of mama.
Sounds like you know who you are, who your son is and that you know best. Run with it!
A post like this is what made me love reading your blog. In many ways, I have a lot of the same feelings about therapy. Everything Kamdyn has done, she did her own time, when she was ready, regardless of therapy. I can think back on a few things that she really benefited from her therapists, like getting our loaner pair of hip helpers that helped her learned to push to sitting, working on crawling up the steps in the last few months really helped her develop some crawling skills and strength, and just the other day her therapist suggested that I put cheerios in her applesauce to give her more oral input so she would stop grinding her teeth when she ate applesauce. Out of almost 2 years of therapy, those are really the only 3 I can say that I probably would not have done without a therapist. I am feeling more and more like speech is a waste for Kamdyn, the reason I like OT is because we LOVE her therapist, and her developmental teacher has only given us one meaningful thing (the cheerios thing) in the whole time she has been coming. So I completely see what you are saying, and I don't think you're a bad Ds mom. The main reason I like the therapies is that it is someone to take some of the pressure off of me. If I don't specifically work on something one week, I know that there is someone else to help out. And I hate it too, when they ask what we've done. The purpose of the therapy is to teach the parents, and if you are confident that you can do just as much, than that's great. Go for it. Kamdyn's OT was just telling me that they are thinking about changing the programs in our area, because they are wondering if the children would benefit more from a more extensive program in the preschool years, rahter than the infant years. But at the same time, there are some parents who would not do anything at all with their baby/toddler, so they worry about cutting back the infant/toddler program. Anyway, anyone who would doubt that you love your son is crazy. It's pretty obvious to me.
ReplyDeleteI was seriously grinning reading this. I love it when you speak your mind openly! :-)
ReplyDeleteI am a proponent for therapies, BUT I also think that any parent that puts their mind and their energies to doing it themselves certainly *can* do it! And you are certainly one to do what you set out to do. I think Russell couldn't be in better hands. Woodbine House has some excellent, excellent books that cover the therapy topics that need to be covered for our kids, and they're very comprehensive. Excellent companions for you! Russell will *not* suffer to not have therapy, I'm sure.
Go get 'em, Jenny!
While I haven't read the Peter Pan book, I'm not a fan of the message. If you've met my 2 year old you would know that she is already asserting her independence. She doesn't want to, and won't be, a kid forever!
ReplyDeleteI'm with you on the therapy. I really like our STs, both through EI and private. I would never give up our PT (we only see her 1 time/month), but I'm really getting close to cancelling OT. All she does is come and play with Claire...I do that! I don't need someone in my house, taking my time for that.
I decided I'm taking (at least) all of March of from therapy for the new baby. We'll see how much we go back to after that.
I love this post because it so real and honest. I am so glad you got your feelings out. That is what I like to read about. People think we all come from cookie cutter families because we have a child with Down syndrome. But, guess what? We are all individual families who are going to approach it different. That is no different than how we handle all our kids! We have went through all the therapies but what I believe it comes to at the end of the day is the home, the parents, and what is done on a day to day basis. Russell will be great because you care and will do what is best to meet his needs, therapy or not...just like you have done with all your children. Therapy I think is just a fancy term we use to call helping our children grow...because I think I do "therapy" with Renee too. With her, though, people call it just being a good mom. I loved this post.
ReplyDeleteYou make me :)! ITA! I think you're moving out of Holland, baby. Good for you!
ReplyDeleteOh, and one of the reasons we are adopting an older child with Ds versus a baby is because we are SICK of the parade of therapists in our home every week. ;)
Just wanted to thank each of you for your comments...Even if people don't agree with my decision I really appreciate you guys at least letting me know you understand how I feel. Each comment meant so much to me :)
ReplyDeleteI had to come back and comment on that Peter Pan book. I went on the Internet and researched it. Oh my...I completely agree with you. Fortunately, there are many who feel like us so I hope that stops the book in its tracks.
ReplyDeleteTherapy!
ReplyDeleteThere was such a vacumn of it here that I felt obliged to find out all I could and that led me to the blogs. I am so proud and thankful for all the things I have learnt, things like realizing he needed thickened fluids to stop him choking and coughing, I got from blogs or the web not from therapists! And if Owens talking was coming along faster I would be pretty relaxed about speech therapy but I want to push it for a while and see if it makes a difference. I must blog about our new speechie !! a 12 year old girl from down the road she is amazing!
Love to you my friend, you put yourself out there, and I love you for it!
I finally have time to reply to this post! Sorry for the delay. Just last week, I was a mess because I was trying to find a way to add more therapy in for Ben. Now that he is getting older, he has access to some more therapies through our early intervention. I made this big chart and was trying to find a way to add this extra stuff in while minimizing driving and maximizing time with Colin and Ben. I quickly learned that it isn't possible and the more I thought about it, is music therapy really going to make all the difference for Ben. He's one, for goodness sake! So I decided against adding anything more to our plate. I do take Ben to a private PT because our insurance covers it and we pay a lot of money for that insurance. Plus, this PT is awesome and I can't give her up. I do learn a lot from her! (She does do treadmill training with him but I really can't believe that his 4 minutes a week on the treadmill make any difference at all. She said I could do it at home with him because we have a treadmill. I think about doing it every day but I haven't yet. I'm so lazy!) So, you are so right. We all love our kids and each are doing our very best!
ReplyDeleteThis is why I love your blog, Jenny. Great post!
ReplyDeleteI haven't even heard of the Peter Pan book. I am a people-pleaser, so therapy is good for me b/c I work more with Levi because I want to show the therapists what we've been doing. The accountability for myself is what I like...but like you said, we've never had one of those honey bear things, and Levi could drink from a straw at 9 mo. I don't think we need special equipment to help our kids succeed. Love and expectations are what help our kids (ALL kids) and no therapies are needed for that. It kind of makes me think about the difference between homeschooling and public school. There are a heck of a lot of things parents can do better than teachers, and there are a lot of things we as parents do better than therapists, too!
Is it wrong that I laughed at this post? Just because a.) you don't need anyone's permission and b.) Russell is doing so well, I think it is a shame you beat yourself up so much. It's a good thing I never read that book. I pretty sure I would have freaked out too. You do know best, you're Russell's mom and quite frankly, happy mom, happy Russell. right? [Insert cheezy clique encouragement here].
ReplyDeleteI love you!! I like when you get things off your chest! it takes it off mine! I did not quit the therapies...somehow I got talked into sending Maddie to school! what the F#@%! really I am so over others telling me what is best for my girl!
ReplyDeletethe Peter Pan thing...dont care! but would love to talk with this Mother and ask why!
smiles
I envy you. I wish I was confident enough in my mothering skills to throw therapy away because I am SO SICK OF IT (we have 4 a week)! But I am not as strong and amazing as you...so I keep on with the suffering. (-: LOVE YOU and PLEASE keeping posting honestly about DS. We all need you to. (and I love how you categorized the DS mom community..so, so, so true)
ReplyDeleteAnd just because people choose to do things another way doesn't mean they love their child more or less than the person who chooses something different.
ReplyDeletePlease let's follow your post and not judge because we disagree, even Peter Pan has value even if you can't see it. But discuss and challenge her views rather than try to stop the presses. Not all of people with DS will gain a mature perspective, the book will serve a key role for some families. I doubt the intent was to set a low bar, her video (the only thing I watched) was not great either but it did convey very mixed messages & emotions--ones I can't even articulate either.
People are annoyed about a lot of things including research, we can't please everyone
"P"...Good points. I guess the thing that bothers me most about the book is that she thinks it will be great for "teaching"...She would like to see it in Schools and Hospitals...And THAT'S what I disagree with.
ReplyDeleteAnd I am sure you are right, maybe for some this book will have value...That does not mean it should be used as a "teaching" tool though for everyone else. That would be like me printing out this blog post saying I am fed up with all the Therapies and I feel they have been a waste of time, and then handing it out to new Moms as a great instruction manual. It's just not the best idea.
And people discussing or voicing opinions is the only thing that ever really gets people thinking. Honestly some of the best things I have ever learned were from people I disagree with.
And you are most certainly right, you cannot please everyone. That is very true.
So I don't want to "stop the presses" I could care less that she prints it out...I just don't want to see her book in MY son's local School's and Hospitals because that is not how I want him to be viewed.