Monday, January 28, 2013

rethinking...

Maddie had her first week of extended therapies...water therapy, speech, etc...it went good...and i was very pleased that I got a total recap and very detailed account of what she did...what we need to work on...and where she is at...it is so real now...real that Maddie is developmentally delayed...yes she is "good" for Maddie...but to be real and honest about Maddie's development is the only way we can improve...if we pretend everything is ok and that Maddie is right on track for a 3 year old...well that does no one any good...yesterday Maddie brought me a book and we read it together...this is the first time she has not tried to read it to me...it is the first time she has initiated book reading...me to her...I went to a training the other day and in there they talked about "good" children's books developmentally appropriate books and not so good books...it dawned on me that Maddie understands 1 to 2 word commands...she gets lost in a sentence...so if I ask her to get her shoes...I say get your shoes please...and she does...if I say get you shoes so we can go bye bye...she is lost and goes straight for the door...or just stands there looking at me...so with reading books to her yesterday I did 1 to 3 word for each page...had her finger direct...so she was interacting and pointing and describing with her finger what I was saying...Maddie continued through the day wanting to read with Chad, me, Max...it was amazing...little things we get excited about around here...she said purple, blue, tree, cow with moo, dog with bark, cat with meow, and some more...those are just new words...let me explain that they are not clear words or sounds...they are a distinctive Maddie speech...I have never heard a child talk like Maddie until I heard another child with Down syndrome speak...and then I knew Maddie was "normal"...I get jealous when I read that other kiddos with Down syndrome are speaking better then Maddie...because I want her to talk clearly...but now I realize that she is doing ok...this weekend I also realized I need to make her come to the store with me...I need to take every possible teachable moment and seize it...I think i am tired just thinking about it...but I now see that it is a must not a maybe sometimes I will...I see that with Maddie I have to make a conscious effort to teach everyday stuff...I have to stop holding her so much because it is easier...I have to teach her to hold my hand in the parking lot...walk not run...and some how I need to teach fear of strangers and dogs...today we went to get Petco to get crickets and I realized again that we did this with Max...we used to call Petco the zoo...and we would spend an hour looking at animals, walking in the store, just learning to be appropriate in the environment...with Maddie I have hid her..and myself...I do not like the stares...it is easy to say just ignore them...but sometimes I can...sometimes i cant...last night in Target 2 women actually came back out of there aisle to watch Maddie playing peek a boo in the clothes with me...Maddie was laughing so loud and big that it was infectious...and these women could not get enough of her...its a compliment of course...but really all I am thinking if I allow Maddie to play this game here what if she thinks its ok to do this at age 12 or 24...I must now reteach how to act in a store...with Max I would not have thought twice about this game...I would have thought it was completely appropriate...with Maddie I worry she will never grow out of it...this is why I have to seize every moment with her...I have had to give Maddie to others to learn to roll over, crawl, walk, now talk, and now I have to give to others to learn how to fit into society...I know it is my job also to teach this...and we do...but I must stay in the moment...I need to just keep in the present...I feel like we are on a roller coaster and I am desperately trying to not fall off...with change comes great growth for me and her!

Wednesday, January 23, 2013

Learning to share...


In the store the other day a women said hi Maddie...Maddie said hi...I looked at the women with a hesitant smile and a questioning look...how do you know my daughter...that is the million dollar question...when we are in public people know her...I do not know them...I search something to tell me is it from school? And why cant they just say hi I am so and so's mom and Maddie and my kid are in the same class...but no...I usually ask but sometimes I don't...and then I wonder...wonder who Maddie will know that I don't...who Maddie will have contact with that I will never know...I am what you would call a over protective mother with both my children...but I am having (forced share) to let go...Maddie will be in this world with out me...with therapist and I will have no knowledge of who they meet...I am not all the way comfortable with this...but I have to share...when we found out that Maddie was going to be born with Down syndrome...one of the things I feared is her being with us forever...never growing up...always being with me...I feared this loss of my indepence of retirement I assumed I would have...so now Maddie is 3 and that fear of losing my independence of retirement is no longer there...I want Maddie to be with us always! and last night a friend said it perfect he never has to go through another snydrome "empty nest" snydrome...yes I found this funny...but I am so up and down...Maddie is being her new life...with out me! And this is now our new "normal"...Maddie will still go to school 4 days a week receive OT, PT, Speech...then she will receive Private OT water therapy, OT, and speech therapies...plus tumbling...this summer she will go to a "special" camp with licenced therapists and master level leadership...she is now our over scheduled child...its just not soccer and dance...it is life skills that she has to have...I cannot believe that it is happening ~my child truly is a community girl...she will now depend on the outside world for things I did not want in the beginning of this journey...and today I want to hold her tight and play...and thats what all of this will help us do...we will become the parents again...and the professionals will do what they were trained to do...it is hard to let go...it is hard to not control what is happening with her...it is hard to see that I cannot do it...my husband a great educator...I mean a presidential award winning teacher has said we need more...how can it be that a child I feared that would always be dependent on me...is no longer dependent...it is such a weird phenomenon...I am so excited for Maddie...I am excited to watch her blossom and grow...but with Max we as parents could take credit with some of his smarts and ability to learn and grow...with Maddie we cannot...it truly is an army of great people that will help her and has taught her tpmbe what ever it is she will be...I am in awe of what our state allows for my child...this task being her mother is one of great honor...and I now can see I am the lucky one...who knew! Thankful...

Wednesday, January 16, 2013

Politic...

Today when Maddie came home on the bus...she was giggling and the bus assistant and driver had huge smiles on there faces...the assistant was quick to tell me they were listening to Taylor Swift and dancing...she said Maddie was dancing in her seat and enjoying herself...I could tell that she was...and I could also see the joy that it brought to them...last night in tumbling a grandma commented to me that Maddie was her granddaughters favorite friend...I smiled and said Maddie has that affect on people...a friend told me she loves to hold Maddie because she melts into you when holding her...in the store the other day I was chasing Maddie -she ran away from me and I was trying to catch her gracefully...and she was giggling and was running with her arms swinging and almost ran into this older guy...he stop quick and let out this huge laugh and big smile...I took pause...not because I think anyone is laughing at her mean or insulting...I do not think they are...I am just now being able to see that that the world sees Maddie through the same rosé colored glasses I do...people in general want to be in her presence...I am not sure why...but people like to "know" Maddie...but only a few truly do...I am very shy in public...I do to talk with strangers...and I do to allow people in my personal space...but Maddie has made me get out of this comfort zone a bit...we do not have many "friends"...I burned those bridges when I was in depression...so being social with Maddie is new to me...I think it is interesting how people react to her...I do not fear the perception will change as she gets older...because I know it will...what I am interested in is the effect she has on people and what it means...to them...to her...is this Maddie teaching the world tolerance...is this Maddie teaching people acceptance...I am not sure i think it is different for everyone...but what I do hope is that with Maddie she will change at least one parents mind to not abort...to see that it is ok to love "different"...that anyone can be a mother of a person with Down syndrome...that doctors do not have to suggest abortion because of a fear they know nothing about...I have been reading the Politics of Down syndrome...a good read...not touchy feely...a honest look at how "society" perceives Down syndrome...this book made me realize that not everything about Maddie is about feelings...that when a reaction from a person in our society towards Maddie is negative...it is because of the lack of education about Down syndrome...about being the 2nd fiddle disability and not getting quality information out to the public...I know that I have to get more active in my community about the facts of Down syndrome...that Maddie can and should be the poster child in our community to see that an extra chromosome looks like and means...I do feel that this book should be given to new parents of a child carrying an extra chromosome...I feel doctors and caregivers should read this book...because it is an honest look at where our kids fit in this world...I want to find a way to advocate on a global scale...this book inspired me to be more and do more for Down syndrome...

Monday, January 14, 2013

yummy mess...





eating...I am so thankful for...however now I think it is time we work on manners and not so much mess...Maddie has a thing with her tongue...she puts the item in her mouth and then she squeezes her tongue leaving all the saliva and food to pour out the sides of her mouth...it is very messy...and she is starting to stuff...Maddie is a 2 to 3 outfit a day girl...

Tuesday, January 8, 2013

The new 2's


I think it is so fun to watch new parents of a infant...I love the gleam in there eye...and thinking I would never ever let my child do this, that, or the other thing...I love it...I stand back and think...your child will be 3...and you will then experience everything you thought you would never ever do or say...I suppose it is my little way of justifying my parenting... I do have hard kiddos...I mean they are naughty...but I like them that way...we have not had a sit down in a restaurant that was not forced in years...our friends changed when my kiddos could speak and have an opinion...chad and I are getting the double dose of what our parents hoped for us...I remember my mom, my dad, my grandma saying Kim we wish/hope that you will have children just like you...and this is not in a good way...they wanted me to have the kid that never sat down...never stopped talking...the kid that you could not talk in front of because they would spill the beans on what you said over dinner last night...I was that kid...and my kids are those kids...it is funny...Maddie and Max are what you would call high energy...they both never stop talking...I just love to see when judgment is bestowed on me and my parenting...I have began thinking that it will come back to you...karma...no matter what you want or believe...your child will throw a temper tantrum in a public setting...will yell and scream and twist away from you just because...they will talk back to you...and it will sound just like how you talk to them...even Maddie tells me off in my nuance and her gibberish...your child will not say ok without promting at age 3 or 4 or 5 or 6 or 7...however they will say but...the word why will turn into but eventually...it just will and be as equally hard to reason, explain and satisfy your 3 year old...just because a 3 year old can -does not mean they will...or even think they should...a 3 year old has a way they see it and it is impossible to change that view...my 3 old wants snuggles on her terms and her time...not mine...and now the independent one does not think she needs help with getting off the bus, getting dressed, taking a shower, peeing like a boy...whole other issue! Yes my 3 year old is soooo 3 that it is delightful...because I have experienced 4 and 5 and 6 and enjoying 7 years old...I know that the hardest is right now...language and communication barrier aside...Maddie and I very much alike...stubborn, and always right...it should make for good teenage years... Characteristics of a 3 year old with Down syndrome...the same as any red blooded 3 year old...but enhanced and defiantly extra spicy...Maddie is so 3.5 that it is insane...she is up -she down with emotions and literally up on counter tops and tables and down on the floor screaming...her scream/cry is the loudest most demanding sound I have ever encountered...heart surgery no tears...esophagus dialations over and over again...nothing...no tears...but take her doll or her music and the world has come to an end...yesterday I got a sliver in my finger and her finger hurt with crocodile tears and pants of sadness...so funny...so dramatic...I am excited that she is emotionally and developmentally just like every other 3 year old...it is so good to remind myself again how wrong I was about my girl...

Friday, January 4, 2013

Mirror...


Perception is a funny little thing...when I began blogging I was a very lost soul...I was scared and confused...I was depressed...but I would not admit that to anyone...I would pretend I was ok and clearly everyone who could see me could tell I was not ok...we gathered with old friends of ours the other day and they commented on how things have changed that chad and I were actually out like adults...we laughed...and I began to ponder about the perception of how I was when Maddie was born...when I re-read some of my old posts I can clearly hear my desperation and sadness...I could not talk about Maddie in real life...because nobody could and wanted to understand my feelings...I was told to get over it...to just thank god she was alive...that we were special parents...so I became a recluse...I only saw people that came to my house...I went shopping for groceries and that was about it...I was safe from judgement...and I blogged to tell my story ...to release all my feelings and build myself back up...I have gotten emails from people and comments not liking that I am so honest or arguing my feelings with me...and I have learned from all of them...I read them I discussed them and I put them in my toolbox...when you have a child born with a special need the books tell you it's going to be ok and tips on how your fairy tale ending is still in sight...but none of them spoke to me...I really thought I was the only one feeling scared and lonely...the blogging world showed me I was not alone...and then I re-read yesterday's post...and I wondered how Maddie would perceive this blog and what her mother has written...when I said that her glasses looked like she was born with Down syndrome...I thought -really Kim! And what does Down syndrome look like...how ignorant of me...how insensitive...I would not have been ok with anyone saying that about Maddie and yet I write it...on the Internet...I do think i have to be honest with my blog...but I do know I can be nice and respectful of Maddie while doing it...I really only care what Maddie thinks and how Maddie perceives what I have written...to change others and how they think of Maddie I must work on me...

Thursday, January 3, 2013

Minute by minute...


I read this quote the other day...it was about feeling the butterflies die in your stomach...you know this feeling the feeling when you hear the "r" word...something derogatory towards you or someone you love...I have been feeling this way for awhile...and it's a culmination of a lot going on...we are now part of the the 47%...I should be excited...I thought I would be...but I am not...I am embarrassed that we cannot do everything for Maddie ourselves...I even considered not taking it...denying it after we waited 3+ years to get it...but when we got the news that Maddie was approved for the waiver all the butterflies went crazy in my tummy and then died...I cried...in part because Maddie will be supported...the hard part...I am know its a hand out...and in the very republican state I live in...this is not something to be proud of...I know that we cannot afford what Maddie needs...I am thankful...and I know it is necessary...Maddie will now get more therapy...all sorts of therapy....who knows she may just speak one day...Maddie will receive more OT and more speech in real life settings...she will receive water therapy and she will be able to go to the Down syndrome clinic in Denver for a complete work up...something our insurance would not pay for...I know this is the best thing for Maddie and for us financially...it made me think I need to just live in this moment of time...that I need to be grateful at this moment for the help Maddie is getting...not think of what others are thinking or saying...it is my insecurities...through this Maddie will get to go to a camp with other kiddos just like her and play and learn...I think Max and I will volunteer so we can get involved in our special needs community...I think it is time...time to break out of my fear of the future and the label I have put on us...I want my bubbly face back...the infectious laughter in my head...somewhere I got out of my Down syndrome funk and became scared of life...not scared of Maddie scared for Maddie about how we would make everything work...she got new glasses...I hate them...they slip down on her nose...this makes me sad...I cannot explain my resentful ness towards these glasses...I feel like they make her look like she was born with Down syndrome...I know she was...but I still forget...I still pretend that she is just my little girl...the other day talking about my future plans...I said it out loud...my plans have changed they now include Maddie...I have to figure out what we can do together...what we can share as a future...Maddie will need to work and probably will want to...so I think I need to start a business for her and I to share...again the living in the moment goes out the window...and I have to pull myself back in...but the reality is there...I must think about her and I...Wyoming does not have much for independent living so that is out...and if we leave the state she could loose her benefits....we are not moving and she is my responsibility...the mother-in-law house will work just fine...I get Maddie is 3...but when you have a huge responsibility and a community helping raise her...you have to be thought out, well planned and have good solid reasoning behind your actions...I am excited for Maddie and what the waiver will give her...New Years resolution stay in the moment and everything should be fine...