Social...

I am very sensitive about anything social with Maddie...my first impressions of a young woman with Down syndrome were very scary to me...and when the dignosis of Maddie was real it was what I pictured in my head...and through the years many of the stereo types have been broken down...but still I am very sensitive and over protective over anything Maddie does in public or socially...having a home daycare has intensified this so much that at times I have thought of it as to much emotionally for me...I have a home daycare to raise my children in an environment providing a educational/home based setting...my background is in early childhood so it was a perfect fit...with Max it was fun and rewarding...I loved to teach him and watch him be mentored by older kids all under my watch...then Maddie came...when I reached out to our local child development center that would provide services to Maddie one of my first questions was do I keep having a daycare...or will it be to much for her...really what I was asking was would it be to much for me...they said this setting was the best setting for Maddie's development...that it would model and nurture what she needed...so I never thought twice about it...my home daycare became Maddie's classroom....and my greatest fear...no longer was it fun to watch what my child could or could not do...no longer was it fun to see her excluded from play because of the lack of communication...I struggled with watching children who are younger then her pass her by with milestones and words...I think struggle is a kind word for my true feelings of saddness...day in and day out I watch what Maddie cannot do...for the people who say Maddie is good for Maddie...yes that is true...and that she has mastered a lot of things...but not at the rate I have come to expect...and this truly is a members only understanding that no one can understand...unless you are the mother of the child that is not doing a particular something...Maddie socially has always tested as typical and above average on the charts...but what those tests do not do is show the whole picture...yes Maddie can play dolls and dress up, she can zoom cars and roar like a dinosaur...but what they do not gauge is how the interaction happens...Maddie does not take no for an answer...she does not except when I am finished you can have the toy...yes this is typical for a one year old...it is not for a three year old...negotiation for toys begins at age one...understanding a trade...maybe not a fair trade but they understand the give and take...by age two they understand the quality of a trade and the give and take that happens in a child's negotion of a desired toy or tool...Maddie thinks she is above the trade and is very elementary in her negotiation skills...I have always said the most important thing to teach a child before kindergarden is how to get there shovel back from a child that has taken it...without tears, fighting, or just taking...by proper negotiation...Maddie is 3 and she cannot communicate to get her toy back...she will scream, tackle the child down and take it back...socially this is not acceptable...funny...but not in the "real" world... if I did not know better I would think Maddie is ok...but I do know better and I know what her interaction should look like...and I think she does to...but her impulse control is off the charts...she cannot keep her hands to herself...her screaming and stomping is alarming to say the least...Maddie plays very good with kiddos that are a bit older that are willing to accommodate her every wish...this is the real world and most kiddos do not want to play like this and nor should they be expected...I will tell Maddie no and redirect her 100 times and she will do it again for good measure...I have never met a more stubborn child...I know she knows better...I can see her wheels turning but she just wants it that bad she will not give up...I do enjoy her milestones and celebrate all of them...what is nothing to some -is huge to us...the other night in tumbling the kids did not want to sit by Maddie and were saying she was a baby...she is older then all of them...but that is there perception of a girl that is small in stature and cannot communicate with them...my daycare kiddos will treat her as a baby also and I have to remind them she is a big girl and will be included and that she can do things herself...most of these kids are younger then her...but they see her delays...I still get sad by each comment...I still cry when I see her struggle...I still want to protect instead of seize the teachable moment...I also do not want to force the issue with others or with Maddie...this is a unknown of helping raise a child that I am very unfamiliar...Maddie is so many things...good things...great things...I am just at a loss when it comes to her interactions with the outside world...in the beginning I would be offended by the smallest or biggest of things...now not so much...now I get a sting...a pit in my tummy...quick...I rationalize each comment or gesture...but the reality is the same...Maddie will always be good for Maddie...but i am not sure if that is good enough for me...when do I stop making excuses for things she cannot do and excuses for the perceptions that people have about Maddie...when is it politically correct to be honest about my expectations of myself Maddie and the public...when is it ok not to apologize for Maddie yelling at a stranger in the mall; because that's her telling her story...when is it ok to tell the person that used the "r" word that it offends me and that I hate them for it...when is it ok to tell the old women that my pointing staring and whispering at my child is not a compliment and is really annoying...and how do I get it through to people that Down syndrome only means one thing...an extra chromosome...that's it nothing more...and it's ok not to attach anything else to it...no but...no and...no nothing...Down syndrome means a 3rd copy of the 21st chromosome...no need to think any more about it...

Happy Happens...

And it does...really...as I hear Maddie singing in the mornings...happy fills me up...when I enter her bedroom and she is standing up dancing in her bed...happy is the emotion that fills me...when she grabs my face and kisses me with passion...happy is it...pure...not questioned...happiness...never...I mean never did I think i could feel this emotion again...it flitted in the beginning of our journey...but it was rare and fleeting...almost empty...because I knew it was missing...and I knew I was robbing my family of the good me...the happy me...the funny me...this digging out from depression has been rough to say the least...on me and my family...but I missed me...and I wanted to be healthy for my family...little by little I made changes...I regulated who I interacted with...I learned to say I don't care...I started exercising daily...I ate less proceed foods...I talked positive to me...i hugged Chad longer...I held my kids more with a smile on my face...little things...I only read and watch things that will educate me not infuriate me...and if they do I talked through them and found my own truth...and in this process a strange realization crept in...one I never thought I would have...I was sad and almost disappointed when I realized Maddie made us no more special as a family...that we were really no different then the family across the street...having Maddie in our lives makes us no better, no happier, no more stressful, no more anything...just a family of four...everything has fallen into place...even doctors visits are routine and mundane...when we received Maddie's diagnoses never did I think we would be looked at as a family in normal terms...but we are and that in it's self is hard to wrap my head around....I thought I would have a sense of relief...a sense of joy...a big woop woop! But I got nothin! I got a big...wait a minute...we are a special family because we have Maddie...nope we are a special family because we all are special in our own way...that's it...nothing more...issues we have with Maddie we have with Max...different....but the same...again something in the beginning I could have not been told...I would not have believed...through this one thing has been abundantly true for me...that I have to find my own truth, reality, happiness, peace no one else can do it...I am a person that cannot be told what to do or how to do it...I have to fumble through...frustrating...but I am who I am...happy...and ok...and my daughter and son...are normal, funny, frustrating, and are going to change the world...because they are my kids of course!

typical days

This is a collection of pictures that best represent Maddie...what I love about them is they are not posed or thought out...just real life, typical, normal Maddie...and what they do is show others that designer genes...are just that designer...it does not mean life is any more crazy...when the doctor asked me to terminate or kill Maddie as she was kicking my tummy...I remember thinking this will never be...none of this will happen...I think i thought Maddie would just sit and look Down syndrome...I don't think in those early days I thought Maddie would do much of anything...let alone who she is today...there is no high functioning or low functioning with designer genes...there is just extra chromosomes...that is a stereo type that needs to be shut down...if that is the case then Max and Maddie are both very high functioning kiddos...Maddie walks, communicates, gets in trouble, climbs, falls asleep in the car, goes to school, has friends, plays with barbies and dolls, and she will grow up and be an adult and she will talk like an adult and act like an adult...she is NOT a eternal child...

HAPpY DOwN SYNdROMe MOntH!

Surprise 21...

This is a list of 21 surprises that I have had along the way... 1. Cuter, funner, more then I thought she would be 2. Naughty, and more spunky 3. Smarter and more in the moment 4. Fits into our family perfect 5. Independent 6. Typical 7. Manipulative 8. Relatively healthy 9. She is still alive 10. And I am thankful for it 11. She has individual wants and needs 12. She can make grown ups very uncomfortable 13. She can make grown ups more thoughtful 14. She loves music and dancing 15. Her medications are manageable 16. She understands her role 17. An extra chromosome makes her no different 18. I would not take the extra away or change it 19. I still would take away her health issues 20. I am ok 21. I survived At the moment of diagnosis none of this was in my truth...it was gone taken...the more you know!

"kjsdj skdjf kj ojn" "your welcome Maddie" "we friends"...a conversation that went on between Maddie and friends...it went on and on for a good 20 minutes or so...Maddie and the kids were cutting flowers and putting them in big pots...when Maddie plays with other kiddos that are in her inner circle they get her...they understand her...she is able to express to them her part...she is working on taking turns when speaking...she loves to role play with others...so I was taken back the other day when we were at the pool and she was talking to some older folks and they were so worried about what she was saying and asking why they and I could not understand her they forgot to talk with her...they just laughed at her...these are old people I get it...but when they talk with me I don't just laugh at them...I talk with them I head nod...I am nice...I finally told them to just talk with her and that she will continue to have a conversation with them...or just stop laughing at her and she will go away...I am not sure where the disconnect happens in humans to be cruel...when extra chromosomes deserves a look over and no acknowledgement or laugh in the face...kiddos are innately good...they see truth...they see nice...they learn hate and discrimination...Maddie is 3 years old and she gets it...she is fully capable of having her feeling hurt...she understands everything you say to her...she may not want to hear you and ignore you...but she gets it...and this is a prime example why I hesitate to let Maddie venture into public...the other day Maddie went on her first field trip with her class to the fire station...I originally said no to field trips...to scary...the teacher called and asked permission...we discussed it and decided it was good for Maddie...plus I had a insider there to help watch over Maddie...he is a family friend and a firefighter and he said she was awesome...participated with all the activities and was appropriate, self controlled, and eager to be there...not sure that could have gone any better...and I know she thrives without me...I am her safe place and she needs to be uncomfortable to learn...today I handed her scissors to cut flowers and she made sure they were placed the safe way in her little hands...these are all big moments in our world...a world I am scared to let Maddie out in...because of the communication piece that is not there...but in our little world she communicates very effectively...very appropriate...I can see the importance of her in school early intervention...i can also see why I have to let her out and go...because she has to learn what to say and do when she is offended or thankful...she has to learn to effectively survive in this world...I am sad it has to be so young...but as I go through this I see the importance of the village...

not so long ago...

Do you remember scared? Do you remember the pit in your tummy that may or may not have gone away...do you remember the hallow unrecognizable look in your whole being...it was not the dignosis that gave me scared...it was the unknown...it was the unknown if the baby was going to live or die...and if i was going to have to make that choice...do you really remember scared...I do...I remember the throw up state of my life...where I felt at any minute I could throw up and lose it...competely...cry on a whim...and the anger that over took me...the why me...why us...why now...and today I wish I never would see another person in this state...I wish upon no one my journey...I thought i did...when I was going through the beginning of being Maddie's mom I wanted everyone to experience the scared...I wanted others to hurt and feel the raw pain I felt...I did not want to be alone...now I feel like this journey was mine...and I really do not think just anyone can handle it...not that I am better...I just know how to cameleon my way through life...I was damaged goods after Maddie...I was sad, scared, hurt, broken...now I am ok..just ok...I am not sure I will ever be that girl I once was...why...because I have met scared...and it does not end...when Maddie has a blood test, a surgery, another unknown...I get that scared pit in my tummy...it is the unknown that I cannot get over...it is not the extra goodness...it is the extra unknowns...scared is not what is comfortable...it is not something you can wish away, pray away, or drink away...it is always there in the pit of my tummy and the back of my mind...it has forever changed me...and that is ok...I got something pretty great out of my biggest unknown...

I don't know...

You know when you are judged on your parenting skills...and you do not know what to say...or how to handle them...and all the while you feel guilty and ashamed...well this is a common occurrence for me...parenting is something I find not to be smooth or just second nature...I remember when i was not a parent I thought I would be so awesome...I had all the answers...I aced my early childhood classes in college...I knew what philosophy I most agreed with and came natural to me...it was the Reggio Amileo approach...in a nut shell learn through play and experience...that there is no wrong way to get to your desired outcome as long as there is learning...so of course this is my philosophy in parenting...I allow my children to have opinions and choices from a very young age...I have taught them to have a voice and to use that voice...this is were the problem lies...not everyone thinks kids should have a opinion...It is good in theory...but not good when your 7 year old is telling an unpopular truth...or not acting in the societal norm..my son is what you would call bright, inquisitive, brash, and tactless...he is a combination of me and his dad...I am the tactless one...and I still struggle with being nice and not so truthful...then Maddie enters the picture...I have been told how to raise her since the NICU...my community baby...but now that she is 3 and independent...behaviors of hers are not so cute...her stomping of the foot with her arms crossed and yelling gibberish at me...is not so great...I was asked the other day if I wanted to have a makeover or do over with my son...if I wanted to change him...change him from being so brash and not nice at times...I gave a look of horror...and one i think that the person knew I was not happy about...but it got me thinking...I teach him to say no now so he can say no when a stranger is trying to touch him or a friend is trying to get him to make a bad choice...I teach him to tell his truth with a reason and evidence because someday he will have to teach the world about tolerance for his sister and others...I want Maddie to be just as vocal just and brash...I do not want a makeover for my children...I want them to be unforgettable...I want them to teach the world something...the other day there was a person that kept getting in Maddie's face...I wanted to back them up...I did once to show Maddie how to do it...and then I waited and waited for her to do it...to physically tell them no and back them up with her hand...for some reason people think they have to talk slow, loud, and in Maddie face...in reality they just need to talk nice and she will listen...but this person just kept doing this...Maddie would back up and she would come closer...finally after about 30 minutes of this she did it...she backed her up with her hand and said no...if Max does this he is a mean 7 year old...when Maddie does this she is independent...I want my kids to be nice and polite but I think adults need to be also...I think as adults we get moody and do not want to be touched or bugged...but if your a kid you just have to take it and smile...I love how everyone wants a smile from Maddie...but sometimes Maddie is not into giving a smile...sometimes she wants to be left alone...and yes I encourage this...and then in the next breath am embarrassed my kid is not nice... I let my kids get dirty and squeeze the glue out into a big blob of a mess...I do this because who cares...I let Maddie draw on herself...because when she is older it won't be ok...the only thing I know about parenting...I know nothing and just hope for the best...and maybe just maybe my kids will grow up to be productive and contributing members of our society...maybe...and then I remember how nice my children were at age 2...they were nice, cute, charming, and everything was ok...I just think kids have a lot of pressure on them...charming an adult should not be one of them...

20 WhAT??

As I am walking out to greet Maddie's bus today I hear mommmm mommmm LoUD BIG and it was awesome...the bus monitor told me she un-clicked her seat belt and got out of her seat when she saw out house! I said YEAH for milestones...and I thought to myself this is awesome...maybe unsafe...but I love it...I love that she can undo a seat belt! I love that she is totally a 3 year old doing naughty 3 year old behavior...I love that she says mom...I feel like I have waited a lifetime for this...and I love that she is excited to come home...and of course I love that she is home in one piece dirty sweaty and tired from a fun solid learning experience...I think it is funny that the reaction from the bus monitor was horror...I get she has to be responsible...but this is a big deal for my kid! And we must celebrate it... A while back about a year or so I wrote about Maddie's nails...how brittle, breaking, ugly and peeling...now they just fall off...I did not think to much about it...it's nails...and we have had bigger issues to think about to deal with....so her nails were put on the to do list...so her pediatrician had me go to the dermatologist to see if it was a fungus or virus or something...his diagnosis is twenty nail dystrophy...WHAT...really it just sounds annoying...so his remedy vitamin B...so I guess Maddie will try it...he said we will hope to see a difference in 4 to 6 months...reaching the Internet...it said there is no treatment...he also mentioned her lack of vitamin B is why her hair is so weird...I have chalked most things about Maddie as it is just a Maddie thing...no explanation...no reason...just it is Maddie's body being it own little extra goodness...I will call the pediatrician and see if I need to put her on a multiple vitamin in case other nutrients are just not enough for her growing body...have any of you had this issue?? Birthday parties...it's funny when Maddie was born I was so worried she would not be invited to any parties...she is...and I am not sure I am much of a fan...a little girl invited Maddie to her 3 year old party...very nice...but I do not know her or her mom...we just met 2 weeks ago...so this is the problem...I cannot scope out or predict the environment...therefore we will not go...I do not want chaos with blow up toys that Maddie cannot do with ease and confidence...I do not want woman and there fake grins and misconceptions of my daughter...the questions...sometimes I am just not into teachable moments...and that is what a party of unknowns turns into...maybe next time...i know we will have many more opportunities for parties...this is just not the age or time...I just feel really good about Maddie her progress her new skills...And do not want any let downs...I know me being selfish again!

Maddie going to school...

Neat...

Maddie has been in school for a whopping 3 weeks now...and she is a ROCKSTAR! Of course she loves it...and of course she has so much to say about it...if only I could understand it...that's another post...but the other day she came home with a all about me book..very common and typical for a preschool project...teachers getting to know the kiddos...it was cute and has a hand print and a foot print...and then it is a answer question kind of book...so when I saw it in her backpack I got sad...but to my surprise they got answers out of her...and by golly they were the right answers...the first question was what she likes to eat...pizza...eyes...grey...hair...brown...likes to play with...friends...color....and outside...I was curious how her teachers were able to get her to communicate these answers...Maddie is very good at yes and no questions...but how does she pick pizza? I talked with the teacher and she said they showed her pictures and she pointed...that she made eye contact and smiled...yeah! This is a HUGE thing for us...it made me cry and exhale...to completely see and understand why school is so important for Maddie...at 3 years old...she is typical...she is normal...and she is amazing...I love that she has role models of good behavior...appropriate behavior...I love that she is in a class with kiddos that have a little extra and some that don't...I love that she has 3 teachers and 3 therapists all looking out for her...and I love that her first therapists get to see her in the hall and check up on her...I know there will be some rough days...but I think Maddie will only be better because of this experience...for something that made me puke, fight, cry, and lose a lot of sleep...it has been surprisingly positive and natural...

Ups n Downs

Maddie began another year of tumbling...this year she graduated to the all by herself class...we were not nervous about it...she has shown me with school that she is really good with or with out us...yes this tugs at my heart and ego...but when I first found out about Maddie's designer jeans I wanted her to be independent...I never thought it would happen by 3 years old...of course this is not a predictor of the future and her driving a car...but she is labeled and she is blowing the expectations and societies limitations of her out of the water...Maddie will change the perception of Down syndrome in our community...last night she went into her class we grabbed the carpet square and it was like we never left...I said see ya...she waved...she did her summersaults and danced...but what I got giddy about was she walked across the balance beam unassisted...a few slips...but she got right back up and pushed the teacher away for help...Maddie is so proud of herself...today she sang a song to the bus staff...they are very taken with her...I can tell they are good because she greets them with a big smile...The bus, school, tumbling...wow my girl can do it all...and there it is the reality of Maddie straight in the face...Maddie is that kid...and she is that stereotype of what I think of when i think of Down syndrome...and it catches me off guard and makes me get very uneasy and freak out a bit...Maddie is a very close talker and loud....and touches and hugs everyone she knows...to much...incisively...awkward for our culture and comfort...and I hate it...I have to stop it...now....but I do not know how...Maddie does not respond to time out...keep your hands to yourself...redirection...nothing...I can not trust her with kids younger or smaller then her or bigger for that matter...she does not know when to stop...yes other kids do this...but that is so NOT the point...this is something that I know can be a problem for adult Maddie...so I need to stop it now...but how...I just keep redirecting...talking with her...but nothing seems to get through...I turn around and there she is...hands on babies face....hugging a child that does not want to be hugged...I do not want her to have kids run from her...I do not want kids to be afraid of her...or annoyed by her...I do not tell the kids that Maddie is a designer child...I tell them to tell Maddie...no...stop touching me...keep your hands to yourself...Maddie was not always like this...there was a time when she was to herself and would go with no one...now she talks to everyone...says hi with a wave and a smile...and she just looks at them with distain when the acknowledgment is not reciprocated...Maddie is thriving in most parts of her development...she is imitating and I was told that is a beginning stage of speech...so is that the issue...am I the one that is modeling the close talking...because I kneel down to talk with my daycare kiddos...am I telling her to hug because I hug the kiddos...and if so...how do I model different...I can't...Maddie is a mini me...she walks, talks, and acts like me...I love it...but this scares me...I just love her...and I do not want her to be chastised for a social norm...this is the fine line that I do not now what to do...I do not want her ego hurt because someone does not like a close talking loud hugging babbling child in there face...I do not want her pushed or ignored...I want her embraced for her excitement for life...