What Maddie is up to...

Maddie began kindergarden last week...not sure how this happened so fast...in the midst of raising Maddie it felt like time slowed down...her milestones came with long periods between celebrations...when she was a baby and toddler I literally thought Maddie would never get to where she is today...but she/we made it...it was anticlimactic at best...so in turn this week I pondered about why I was numb...this is what I think happened...Maddie simply put can do anything...the difference is that she gets there slower...she gets there and it looks different then what I have experienced...but it is not less and it is not more...it is just perfect for Maddie...I have a motto that raising Maddie is a marathon...not a race...I still compare Maddie; I probably always will...it's just my nature...sometimes it makes me feel insecure...sometimes it makes me sad...but what kills me, eats at me is that where she was last year did not want her...could not handle her...they acted as if it was a chore to have Maddie in their classroom...the sometimes email after I would repeatedly ask would say that Maddie was naughty, not listening, not on task...after her exit IEP they mentioned they stopped all sign language and pecs with Maddie...this was why they were having issues...Maddie is still pretty non verbal...she has words and we understand her and her therapy base program understands her...but if you do not take the time with Maddie she will not perform...she will not want to understand...and then she will be off on her own...getting into the sink or trying to escape...but this year...Maddie is busy!! And she is in the best of the best of programs in our public school system where the teachers want her and care for her and communicates with me and Chad...and is just present in Maddie's day to day....she then goes to her after school therapy program that is stellar offering speech, OT, PT, feeding, community life skills...daily! Yes I said daily minute by minute purposeful therapy...she goes swimming, climbing, jumping...holy cow...then on Fridays she has a dance/tumbling class that she absolutely loves with her friends from school...amazing...the lift in spirits in our whole home...because our girl is thriving and excelling...

Now if we can get her health to understand that we do not have time for more!! We went to the ophthalmologist a month ago and the pressure in her brain has not improved nor has her eye sight...so back to Denver we go next week to see the neurologist...best case we wait and see...worse case  is unknown...I say unknown because this whole thing has been bizarre and scary...we also will see her  pulmonary  and  GI doctors to check in on things...again best case is we will see them in 6 mo...worst case is hearing something that is not expected....more...more medications, more tests, more doctors, more visits...we need a break from all this and worry about what we will be for Halloween!

Worry..

Why I worry?? It is actually more complex to answer then one may think...the cliche is that I just love my kiddos so much...because I had something so horrible happen to me...I have to be in control...surprisingly it's not really any of those cliches...of course I love my kids...of course I have had "bad" things happen to me and I am a bit of a control freak...but thats not it...

The simple short version...a moment can change everything...in one moment a life can be forever altered...if I can prevent that moment from happening...I will..would you not?? A couple of years ago we were in Washington D.C. and Max decided to get independent at the food court...horror!! So I let him go in and use a public bathroom alone...reminder we are from Wyoming! it did not go well on my part...I stood with the door open asking if he was ok every 5 seconds...disregarding the privacy of others...all I could think is my kid could be touched, fondled, taken...changed in a moment for life...did I apologize...nope...I probably should have...but I have no trust...but really do you???

I believe in fairy tales, love, mermaids, unicorns, and that world peace is obtainable...I want to trust...but I can't...not when it comes to my children and their lives...the statistic for a person with a disability to be sexually abused is 90% and 80% will be abused again...WTF...I know I cannot live by statistics...but if I can prevent it...why would I not...because I may offend someone...ok...so...

Trust is earned...being a part of my children's lives...is earned...we interview people to get jobs, to be our spouses...hell we even read reviews and research what car to buy, what neighborhood to live in...so why not interview the people spending time with your child...follow up with them...get to know them...reference check...to trust that some one person or a HR guru can do it better is very nice...but the reality is that your child is your business...your responsibility...

I am not sure their is a parent out there that would think...yeah I am glad I took no responsibility in the village that helped raise my child...No mother ever said...I would hate to hurt others feelings in being positively proactive...

At some point we have to let go of the thinking others want the "best" for us and will do anything to provide it...the bottom line is everyone that provides a service is in business to make money...either to pay their employees or to pay themselves...they may really want the "best" for our kids...but business will always be business...and hiring a person is risky no matter who they share DNA with, credentials, experience, if they go to church and believe in the "right" deity...a person has a mind you cannot see..and is subject to change...

I am the annoying parent...I call...I email...I pop in and observe...I ask who the assistants are...who has contact with my kids indirect or direct...am I overreacting...in others eyes including Chads...yes...in my mind...I am just doing what I feel is necessary...I guess only time and future therapy will tell if Me or Chads philosophy was "right"...

Terminology, Labels and Phrases

Terms used to describe my kid...and my other kid...

Ordinary - no special quality or interest; common

Normal - usual, common type, natural, regular, typical, conforming to the standard

Different - not alike in character or quality; unusual,  not ordinary

Special - a distinct or particular kind or character

There are words that drive me crazy! The above mentioned are some...they all have negative undertones regardless of how the person is meaning them to be...how about just describe Maddie or Max as....

Maddox -sister, daughter
Maximus -brother, son
better yet for both of them -HUMAN...

Max is often described as smart or interesting...negative perhaps...
Maddie is described as special or different...negative perhaps...

in the hospital this past week Maddie and I were watching Frozen for the 134th time and I picked up on when Ana told the short bald dude asked if she was just "ordinary" and then her guy friend said she was "ordinary" and then apologized that he did not mean it as an insult...and that got me thinking about how we use words and how we receive labels...for example I do not see Max as "normal" I see him as "special"...I do not see Maddie as "special" but as "normal with extra zing"...when someone comments that Max is like any other 8 year old I am offended...if someone comments Maddie is like any other 5 year I ask what they have been smoking...my point is that labels and descriptions can be offensive to any parent...we have an idea of what we want or wanted in our child...that we created...we want to think our children are an extension of us...with that when that extension comes out different, special, unique, or ordinary we can get a little confused...my emotions and frustration truly are all over the place with labels...when someone comments on my child...very rarely do I want to hear it or know the label assigned to my child...whether it is white, male, female, nice, happy, smart, or slow...none of them sound good enough...

I am not saying I do not use Maddie's label to our advantage...I do...when going through a National Park we have pass that lets us in for free...all because of an Extra Chromosome...a label...its funny they ask who the person the pass belongs to?? we all point to Maddie...and they say oh ok! Thanks!...am I offended...nope...thankful I get in for free...

I guess it is a decision whether to be offended or not...personal choice...so from now on I am going to refer to myself and Maddie as a 'Basic Bitch' the urban dictionary says its just a extra regular female...I think that is classic! I am still working on what Chad and Max are best described as...

then there are the clumps of words that drive me crazy...the phrase that kills me is....and are continually said to me or about friends...

"you are doing it right"

WHAT does that mean????

I have not in my 40 years of life done anything "right"...just saying...I am the stumble in and hope for the best...Chad and I have done everything backwards...the next phrase..."they are good people" HUH! what is that..."good people"...do you live with them?? do you really know them?? because I am thinking you do not...people are HUMAN!! sometimes they cannot do it "right" because your "right" and their "right" do not line up...it is simple...really...stop labeling everything...remember that HUMANS are all "different and special" as well as "normal and ordinary"

soap box...perhaps!!

Eyes...

Maddie wears glasses -obviously...people often asked me how we knew she needed them...it was the simplest of things...her pediatrician commented during a routine visit at about 9 months old that she needed to see the ophthalmologist...so off we went...next was finding glasses that fit, stayed on, and were VERY durable; a challenge but we found them...funny they are from Walmart...best glasses so far $50 and full coverage on anything and everything that a kid can do to a pair of glasses...Maddie does not mess with her glasses...she needs them...plain and simple...so about 2 years ago our local ophthalmologist got it wrong...A teacher mentioned that she did not think Maddie can see with her glasses on!

Oh my mommy guilt!!

So I offended the doctor and got a second opinion...yep he was wrong...so we began seeing a regular eye doctor...love him!! He was really good with Maddie! So we did not return to the ophthalmologist...

fast forward to March at our annual visit to the Down syndrome clinic they REALLY stressed that we needed to see the ophthalmologist again and we needed to see the one at Children's hospital...well that means another trip to Denver...so I put it off till the summer and when we had more time...mid June came fast and off we went to see the doctor...I kept thinking I should cancel and that it was a waste of time...I was annoyed that it was another visit...so trying to be positive I began to think of the cute selection of glasses they would have!

During the initial exam Maddie was a ROCKSTAR!! Seriously she is so good at it all; matching the pictures, letting them look in her eyes and so on...then the ophthalmologist began her exam and the dreaded silence took over...I know this silence...the one that comes before a diagnosis, a test, and it always results in -more...extra...

The doctor turns to me and says "has anyone ever told you that Maddie has fuzzy retinas"

huh! What!! Um no! I start to laugh...because this is Maddie! In a nut shell...

we go in for glasses and come out with a MRI...after pictures and ultrasound on her eyes...Maddie has a problem...and we do not know what it is...so 10 days later after insurance gave the ok the MRI confirmed that Maddie has to much pressure in her head and is causing her retinas to be swollen...

hence fuzzy retinas...

This is not optimal to say the least...am I relieved that it is not a tumor?? obviously...

but really can we not just go to the doctor and have a "looks great! We will see you in a year" nope we get the you get to go see the neurologist in a week..because it is "urgent"... WTF...if something can go wrong or different or challenging...it will happen with Maddie!!

this past week Maddie had her Spinal tap or lumbar puncture which ever you want to call it...and it confirmed that Maddie has to much fluid in her brain (pseudotumor cerebri, idiopathic intracranial hypertension) causing pressure on her optic nerve...causing her eye sight to worsen and possibly go lights out all together...they drained the excess fluid and she is now on a pill twice a day that will hopefully keep the fluid down and the pressure off her optic nerve...

to say i am ok with this is a bit of a stretch...while we were waiting to be released by the hospital one of the doctors came in and said that we should be relieved that we are not being seen right away by the neurologist team because it means our child is not as bad as another child...i am gonna be honest with you..i was not relieved...i was not happy...Maddie was not happy...she has been put under anesthesia over 20 times in her short life...she has had as many surgeries and/or procedures done...and this one had to do with her brain...lets face it the only low risk, not a big deal surgery/procedure is done on someone else child...not your own...

the up side of this is that Maddie's sight may improve...so new glasses!! the not so upside is that we have gained two more specialists that include monthly visits to Denver until further notice...Maddie of course is amazing...but her little body needs a break!!

Sshhh its a secret!

But it is not...a secret...so in the hospital this past weekend the nurse asked me if Maddie has developmental delays...I ask her if she was serious...she said yes...I said you do understand what it means to be born with Down syndrome...right...she said yes...but I was thinking -no...Maddie was born with a extra chromosome...there is no reason to pretend that it's not there...Maddie is a product of how the sperm met the egg (meiosis)...I am sure some people like to think it is more...it makes them feel better like it is not their fault or what ever the reason may be...but a huge pet peeve of mine is that when you are talking with me...never pretend that the disability does not exist...or minimize it by saying she is like everyone else...she is not...Maddie is unique...and that is ok...Maddie learns different...and that is ok...do not whisper to me about things you notice...and for the love of humanity do not tell me about your second cousin or friend of a friend that had a child born with Down syndrome...I do not care...like ever...I may smile...but it's just because I am nice...

kind of...

Maddie was born with Down syndrome...I actually want her to marry a person with Down syndrome...I want her to be best friends with a person with that extra chromosome...seriously I do! I also want her to go to school with kiddos that also have extra challenges...to be honest a "normal" child just does not cut it for me...Maddie was born with Down syndrome and it does not make her a second class citizen...she is not high functioning or low functioning...she is a 4 almost 5 year old...she has selective hearing and a stubborn streak..

and...

exactly...

Maddie is her own person (human)...the extra chromosome does not define her...please do not minimize it by telling me you didn't notice she was born with an extra chromosome...because you did...and I am not ashamed or embarrassed about it...embrace the cuteness...

Please do not assume I want my child to be in the same classroom or activities as your child...and let's not pretend you did not have a fleeting thought of "oh no" Maddie may be in my child class/activity and take away from the learning time of my child..you thought it...it's ok...i get it...but it's not really ok is it...because I have to fight to be in the same room as a "normal" kid...she is a human with rights...that's it...and I do not want to have to explain it...or feel it...I want people to see Maddie for Maddie...not what the politically correct version of today is...it's that simple...I want Maddie to have people around her that like her because she is a great kid...not because it looks good for them...will I trust a "normal" kid/person that wants to be Maddie's friend...probably not...they can earn my trust...but it will be hard...because I am just that way...I have a home daycare...and the kiddos struggle to understand Maddie...Maddie sounds angry when she is not...she plays aggressive when she is trying not to...when she touches a kiddo she will pat her belly first because I have taught her since she was very young hands to self and then pat her belly with her hands...she thinks about it...and she always tries...but most of time it ends in a redirection with what should have been the appropriate touch or word...in reality Maddie's interactions with others can be awkward and strained....please do not pretend my WHOLE child does not exist...she does and that includes the extras that come along with it...I am ok with it...and it's not a dirty little secret that should be ignored...

When being in the company of me think before you speak...understand your words and actions matter..it's not really that much different then me saying to you...so does your child have developmental delays?

Dear Mom, it's Ok...

I really like the Dear new Mom letters...now that Maddie is almost 5....I like the hopeful reassurance that they give future Moms of Down syndrome kiddos...because the truth is when you get a diagnosis like "your baby is positive for trisomy 21" there really is no "right" way of dealing with it...there is just how ever the new Mom feels...thats it...I do not think a letter would have helped me...because I truly believed I was the only one that had ever felt this disappointment...maybe it is my nature to be self centered, selfish, immature...but it was how I felt...I hated everything about Maddie's extra chromosome...I found nothing in the beginning reassuring or comforting...I read the book that doctors give out called "Gifts"...I threw it out...It made me feel bad that I was not happy...it made me feel like a inferior woman because I could not just be ok with it...that's why I started blogging...for me...because no one in this world understood me and my sadness...I felt alone and isolated...I felt small and lonely because I had to make the decision if Maddie lives or dies...I had to be the vessel in which held the baby that people do not want...I was the one with the burden...and at the time I felt like I was the only one that felt this way...I was told to be happy and that someday I was going to be thankful...but in those dark days I could not see that...

fast forward to Maddie's delivery...and the first time I touched, smelled, and saw Maddie...that was the day I said to myself -thank you...thank you for being the great vessel...thank you for being strong enough to give birth to this perfect child....and I also said thank you to my husband and doctors that made that moment possible...throughout her past 5 years of life....her milestones, her accomplishments, her becoming who she is today...I have never again thought about life being ok without her...I am thankful daily that she is my girl...Maddie is the reason I am the person I am today...that selfish me is gone...and it is because of Maddie that I truly understand fighting for something that is important...it is because of Maddie that I truly understand life is not fair and that it is not suppose to be...and that it truly is ok...it is because of Maddie that I want to live a full life with people that encourage our differences and cheer us on through the trials of being a special needs mom...because our life is what it is...our "normal" is a village of doctors, therapists, case managers, and teachers helping parent our child along...it's really not a big deal....but it is....and that is ok...what I am trying to say to the new Mom out there...is that it is ok to be pissed and it is ok to be sad and it's ok to mourn the child you thought you were having....and it's just ok...your journey may be different then the one you dreamed...but being a mother to a extra chromosome is exciting, challenging, hopeful,rewarding and not just plain vanilla! Parenting Maddie is not about Down syndrome...it's about a perfect little girl that will show you how life should be lived...without judgement, boundaries, preconceived notions of what's "normal" and safe...

I can't tell you everything is going to be ok...but I can tell you that in this big world of Down syndrome parents we will love your child and see all that your child can offer and we will value it...we will cry with you and  give virtual high fives when your child rolls over, eats with a fork, stands up, walks, talks, hugs, says I love you, goes to school and becomes who they are...with no judgement on the road it took to get them there...

So to future Moms out there of kiddos with the extra chromosome...you are not alone...someday maybe you will find your peace or already have....and if you do...tell me how! So I can learn...because I still have challenging days and bad days...but mostly I have great days because Maddie is alive and I get to know her better everyday...lucky us! And most of all I really enjoy the Dear future Mom letters  and how great parenting Maddie is and how much better it is going to get...because sharing is caring!

Decisions decisions...

I have been a little stumped lately...you would think I could put it out here on the blogosphere and let go..I usually can...that's why I blog to release myself...I am not one for disclaimers as in your going to be offended and I really do love my daughter...but I have taken a self pledge to not apologize...I think as women that's what we do...we say sorry for everything...not looking perfect all the time...not having the best behaved children...having a well lived in house...or even having a opinion...a couple months ago I commented on a blog and it went viral because a women didn't like my opinion...that is just not how I role..I like debate ... I also like teaching my kid to think for themselves in all aspects of life...I do not tell them to believe in anything or everything...they get to decide for themselves...and that includes Maddie...so with all that; here is why I have not blogged in ages...because I am going against the modern Down syndrome parent advocate push...we are putting Maddie into a FLS room for her elementary career...I know I can hear the "say what's", why??  FLS means functional life skills...I think that is self explanatory...I know many out there want their children to be in full inclusion...but I have a expert in my back pocket...and we defer to him on all things with Maddie...why? Because he has worked with many people with Down syndrome for many years and he has also raised a child born with Down syndrome...and this is what he suggests...why? Because it's not a race to get Maddie to learn her abc's or 123's teaching Maddie is a marathon...and it takes more people then one classroom teacher...with the FLS room Maddie has a low child to adult ratio...why not a aide? One word -dependence...I do not want Maddie dependent on one person for anything...I want her to think for herself...I want her to learn like she needs to...not how 18 other kiddos do...also the one on one aide here in Wyoming does not have any real training...not specifically teaching children with Down syndrome...but her FLS teacher does...so the fit for Maddie works...do we still have to fight...of course they just don't give out speech, OT, PT etc...most important the school and classroom want her...and that is important...Maddie is verbal but not to the extent that she can tell me if she is being hurt and who....so I rely on people to tell me about her day...I need to trust these people completely...and I cannot expect them to watch my child plus 18 other children and expect to get a good report...is Maddie ready for kindergarden...nope...she is not...not even close...but we have over stayed our welcome at her preschool...why? Because they do not know how to teach Maddie...they try...but really Maddie needs more and different instruction, cues, environment...is Maddie more alike...in some things yes...but not in her learning style -she is different...and that is ok...Maddie thinks for herself and has to be redirected  and reminded...Maddie is Maddie...she is loud, sassy, and thinks she already knows everything...and it's ok for her not to become the cookie cutter learner or student...Max is not...he is his own person and I love that about both my kiddos...it will serve them both equally well...Maddie has a bright future ahead of her and I accept that she is different then the typical anyone...I am not going to sit back and pretend that life with Maddie is amazing all the time...I am not going to pretend that her being the smallest and the cutest doesn't get to me still...because it does...Maddie is just a kid that needs more...and the best...so guess what I found the best in our town and I am fighting tooth and nail to get her in...it is not a sure bet that she will be accepted...they do a lottery draw to determine the school your child attends..but I have name dropped, called, emailed, introduced, and reminded that I want Maddie to have the best...so cross our fingers she gets in...or I am not sure what we will do...