Be

For my daughters:

After all the degrees have been earned,  therapies completed, the tournaments played, loves lost and found, decisions made and reflections shared,  I hope you can Just Be.

Be KIND, be HELP, be FAITH, be HONEST, be LOVE, be BEAUTY, be RESPECT, be PEACE, be LOYAL, be ADVENTURE, be STRENGTH, be CURIOSITY,  be LANGUAGE, be ART, be MUSIC, be CONSTANCY, be TENACITY, be HUMILITY, be ABLE, be DISABLED, be COLORFUL, be JOY, be LAUGHTER, be GLORY, be HOPE, be SUNSHINE, be CHANGE, be POWER, be ACTION

be yourself and be WITH Him.

 

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Fitting in: the production.

Let me first start off by saying that I am one lucky woman to have a great husband and four amazing children.  I would never take that for granted.  But, after raising my first three girls in a typical world I am often reminded just how far society has yet to come in making those with disabilities feel truly accepted.

What does it really mean to have a child with a disability?  EVERYTHING is a production.

Here is an example of what it’s like to sign your neuro typical child up for a summer recreation soccer league:  You forget to sign them up, but have no worries because you know they will have a spot. In fact a coach calls you and says “hey, I noticed you forgot to sign up so and so , so I saved them spot.  I would love to have them on my team.”

Sign – up process for Maria :  You see the age ranges on the registration form and although she is 8, you know they can”t safely play in a co-ed 8-9 league because she is  the size of a four year old.  You call the head of the league and ask if she can play down an age category.  No one returns your call.  Because your older child wants to play and your registration is now late, you send in the form but only sign up the older child with a note attached explaining that it is late because you were waiting for an answer about Maria.  You get a call back, but the answer is no.  You are not even mad because you understand they have had previous issues with parents playing children down a range so they can be ‘stars”.  But, at the end of the day, Maria cannot play and you are sad.  Yes, she can play in special needs leagues, but all of her classmates are playing in this league and it is just another reminder of something she can’t do in our typical world.

Which leads me to friends:  Your neuro typical child:  “Mom, can I have a friend over?”  Me:”Sure, call whoever you want.”   The child comes over, they play and have a great time.  The next day the playmate calls to have my child over their house.

Playdate for Maria:  Maria “Mom, mom, mom, Claire, play at my house?”  Me:  ” I don’t know honey.  I can ask their mom, but I think they are busy today.”  Sometimes I ask, sometimes I don’t, because they are always busy and it breaks my heart as much as it will hers when she realizes the real reason they are always busy.  Don’t get me wrong, Maria is always invited to the class birthday parties and has had one friend over  couple of times.  But,  has never once been asked  to play over at another child’s house.  She spends most of her time playing by herself or with her sister’s teenage friends.  I am sure this is why she has grown to prefer older girls.  She also loves to play with toddlers, because they never tell her no at the playground when she asks to play.

Going to a birthday party:  Me to typical kid “Are you ready to go?”  Them “yup.”  We go, they have a blast.

Birthday Party with Maria :  An hour before we have to leave you say ” Time to get ready for the party, go to the bathroom first.”  Maria:  “I did!”  Me :”no, you didn’t, get on the toilet.”  She begrudgingly goes in the bathroom.  I tell her she should try to go poopie because it is a jumping place and she has not gone in 5 days and I know she will have to go at the party.  She whines and cries on the toilet for 20 minutes and with all that screaming and pushing you assume she must have gone.  Nope.  You give up the fight and get ready for the party, which takes another 20 minutes.  You don’t want her to miss a chance to actually play with her friends outside of school.   You go to the party and she has a blast jumping with her friends.  You let her have the gluten filled birthday cake, because she loves it and you don’t want her to keep feeling left out even though inside your head you are kicking yourself for allowing it.  When you get home, the gluten has helped relieve the bathroom issue though so all is well.

I could write pages and pages on how painstakingly exhausting it is to sign your chid with a disability up for school and get them the services they need to be successful, but I will spare all of us that today.  Just know that it is honestly a part-time job for the parents.

As I sit here texting with my eldest about her new boyfriend and grad school, I am praying that by some miracle  I will someday have to go through the “production” of helping Maria through those things as well.

My two oldest entered the workforce at 16 with nothing more than a pen and paper application. There was typically a follow up phone call from the employer telling them when to come in for training.  I cannot even imagine the production it will be for Maria to get a job.

Perhaps ,someday, people won’t talk to me about Maria right in front of her as if she was not there. Almost daily someone will ask me a question about her while she is standing next to me. In my head I  say “she is right in front of you, fucking ask her” but in reality, I answer. Although, now I am in the habit of turning to Maria and saying “i don’t know, Maria, what do you think?” This is a not so subtle way of trying to teach others that people with disabilities are just that, people. Expect the most from people and assume the best. Anything less is just insulting. If they need extra help they will let you know.

What it all boils down to is expectations.  I expect an enormous amount from Maria, because I know she is capable of doing many things with the right guidance.  The world expects nothing, which could be an easy way out for everyone involved.  She could just stay home with us, not attend parties, or join teams or school for that matter and it would probably alleviate a lot of stress.  With a typical child that would border on child abuse, but the world would not bat an eye if that is how we raised Maria.  Only being a few decades from children with Down Syndrome being institutionalized, there are many that would still prefer her staying in the confines of our home.  So, we go through the “productions” to give our children the most well rounded life we can and we hope that someday society will catch up and make the “production” a little less exhausting.

 

 

 

43 and Alone, accepting yourself

It’s 52 degrees, raining, super windy with a coastal flood warning for the overnight.  I am 9 hours from my residence in Buffalo, NY but I have never felt more at home.  Wells Beach, ME is a place I came to as a child with my family many times and now I find myself here at 43 and alone.  It is glorious!

When I first decided to take a weekend away by myself, some people were envious, but just as many had questions.  Are you okay?  Are you depressed?  Are you and Ed having a rough time?  Won”t you be bored?  Is Ed ok with having the kids all weekend?  and the list goes on…..I have to wonder…Why is it out of the ordinary for a woman to go away by herself, but that topic is for another day.

About a year ago if you asked me who I was I would have said “Kathryn, I am a mom to four beautiful children, one with extra needs.  I also teach music to elementary school kids and perform in churches.  Most recently, I started working in Early Intervention, helping little ones get the extra help they need.”  I walked in on a conversation about me a few months ago and I heard one mom telling another “you know her, red hair, she sings at church and does a lot for special needs kids in the Catholic schools”

All of this is true but somewhere between the caregiving, cab driving, cooking, cleaning, teaching, advocating, conducting, directing, mentoring, doctoring, house managing, spiritual guiding, and shopping, to name a few, one can forget who exists underneath the many hats.  I almost forgot, I am  a wife too!  Love you Ed (who by the way, he is fine with being a single dad for the weekend and no, we are not fighting 🙂 )

When we are always something to someone else and defined that way by others and ourselves it is only natural to forget who we are to ourselves.

It only took one car ride and to eat some lobster pizza while watching the angry ocean pound the flood wall for myself to come rushing back.  I love food (carbs and seafood mostly).  I love sex.  I love my relationship with Jesus and Mary.  I have been given many gifts, and although they are all  mediocre in the standards of this world,  I know the spirit is guiding me to use them effectively.  I have devotion to those I love but very little patience or trust for anyone that has ever hurt me or a loved one.  Forgiveness is hard for me.  A day without purpose is a wasted day for me as I have been reminded many times how fragile and short life is.  I,I,I…I am done talking about myself but so blessed to be self aware enough to know my flaws and strengths and accept all of them.  Truly looking forward to the next couple of days of getting to reunite with Kathryn, no last name.

If you find yourself always saying “i am so and so’s mom, or “so and so’s wife” or simply defining yourself by your paid work, it may be time for you to hit the road and be alone with yourself.  What better company?

 

Learning to Let Go

Giving up control is something that I have always struggled with and that may be why God gave me 4 very independent girls: to teach me a lesson:)  There is the obvious… letting them bring an art project to school that actually looks like they made it, because they did, letting them take control of the steering wheel (currently teaching daughter #2 to drive!) or letting them burn a frying pan making grilled cheese for the first time.  But, for a mom who has spent the last 6 years fighting for support for her “special needs” daughter, it is really tough to give up what I was so certain she needed.

Maria has a personal aide in school and 4 therapists.  She also takes a typical dance class that has 6 students and an aide, Miss Jen.  Miss Jen is for the class, but because Maria had trouble focusing for the entire class and because I was so nervous to allow her to disrupt the class and possibly not be welcome back, the aide has become more of a personal aide to Maria.  To keep her in line she holds her hand through much of the class.  Even with this Maria was flopping to the ground and refusing to do most of the class.  We went from “her legs are too tired half way through” to “she just doesn’t want to be here” to ” maybe it’s too difficult and she is frustrated or embarrassed.”  Well, I was wrong all 3 times, almost.

Last week the aide was absent and the teacher said that Maria did about half the class herself and then sat and refused to get up (a routine she has set for herself there).  But, the teacher was surprised at how well she did the first half and actually commented as to how well she was doing without Jen.  As Murphy’s law would have it (or so i thought), that’s when maria did her ‘drop and flop.”  This afternoon, the teacher held a make-up class for missed days and again Miss Jen was absent.  Neither the teacher nor I mentioned Jen at all and Maria danced the entire 45 minutes, doing all the correct moves!

The teacher and I have been racking our brains trying to figure out different ways the aide can help Maria fully participate not realizing that Maria WAS embarrassed (that’s why I was only ‘almost’ wrong :).  but,not because she was struggling, but because SHE had an aide and didn’t need one.  She was even embarrassed when the teacher pointed out how well she was doing without Miss Jen.  I spend so many hours trying to figure out ways to help Maria that i sometimes forget she is growing up all on her own and can help herself.  She so desperately just wants to be like everyone else and because she can’t express those feelings with words yet, she chooses, what I call “bad behavior”, to say “I AM like everyone else Mom, teacher, whoever.. just leave me alone.”

Watch out world.. she may be 40″ but she is a 6 year old on a mission!!

Life updates!

Life is just so busy.  We go and go and go and we forget to take time to stop and document/remember/share our lives.  Our lives are meant for work but they are also meant for sharing and cherishing.  A life that does not effect others is not a life worth living.  I forget that and I forget to blog 🙂  It’s been a while….

So, Christina is married and expecting her first child!!!  Ha!  It hasn’t been that long!  Seriously, Christina is chugging along in her first year of college.  Although she chose to stay home for college and save herself debt, we hardly ever see her and the house has just become a travelers lodge for her to stop and freshen up.  She has her third interview for a job on Friday which will land her in a dorm for the summer.  Little does she know, dorm life is not all it’s cracked up to be.  But, I pray that she gets it for the experience!

Julia, who does not want us to know anything about her life and has shown almost no interest in any college flyer that comes in the mail, was caught making a thorough list of schools, comparing and contrasting cost, clubs, majors etc.  She is a secret planner, as evidenced by her emergency toiletry kit hidden in her room.  I would love to have one day in her head, but just one.. anymore than that would scare me:)  Remember her name.  One day, when we are least expecting it, she will take over the world.

Anna is Anna.  She’s a unique 12 year old.  That is actually saying a lot.  Most 12 year olds are just carbon copies of each other.  She walks to the beat of her own drum and I have found her rhythm so entertaining this year!  She is becoming a young woman who does not care at all what others think and is finding her own passions beyond just soccer.  She is wise beyond her years and when I find her watching shows, like Breaking Bad, I have remind myself that she is 12 and needs to shut it off.  But, she loves stories, historical stories,especially ones about the Holocaust, and hates discrimination of any kind.  Following in her mother’s footsteps, I read her Social Studies project entitled “The 10 things I would do if I were President.”  Number 8 was my favorite. “I would have a Special Education teacher in every school.”  When i asked her why, it was simply so that everyone could learn together in the same school.  Wonder where she got that from?

…Which takes us to Maria.  While First Grade in a mainstream school is not going perfectly, it is so much better than I predicted 🙂  It took her a good month to settle into the routine and learn the behavior expectations of the teacher.  Since that time, it has been great.  She has a wonderful teacher that works with me at modifying her curriculum and finding  the balance between challenging her and not stressing her out.  Maris works her butt off everyday.  She is passed out every night by 7:30 trying to absorb what she was exposed to that day.  She is reading!  It is slow but steady progress and last year at this time I would not have expected her to come this far.  Her math is severely behind, but that is okay.  It always will be. I haven’t given up on it, but have accepted that reality.  She is working on simple addition and subtraction (no Common Core crap!) and since we need to be practical, she is learning money with her special ed teacher. Most importantly,  she is accepted in her community.  There are times she is given a pass another child wouldn’t get and I have to remind the staff to treat her like everybody else.  But, sometimes, when I see her exhaustion at 7:30 I let her get a pass too.  She fights so hard to be like the other kids and has to fight herself so often too.  She knows what is socially acceptable and what is expected of her, but often her brain tells her to act impulsively still.  Watching her try to stop herself and “be good”  makes me happy that she is maturing and smart enough to know what is ‘right”, but sometimes still aches my heart that she has to try so hard at EVERYTHING.  But, my heart breaks for all my kids at one point or another almost every week!

Ed and I are chugging along too.  He’s working his butt off ( he seriously may have froze it off this winter!).  I’m still singing! I am also on the board, with a group of awesome ladies, of a nonprofit that helps children who receive special ed services in the Catholic schools here. It has been so rewarding to see all the hard work of our group actually help parents get the education they dreamed of, but did not think possible for their child.  God is leading my whole family  in wonderful directions everyday.  I have chosen to keep my eyes open, as to not miss any opportunities or callings.  I want to make sure I am living the life God has chosen for me to cherish and share.  Thanks for making it this far in reading a boring “family update” letter.  Please don’t forget to share your life.

McDonald’s

Once upon a time there was a mom who brought her son and her son’s friend to McDonald’s Playplace for some lunch and some time for the boys to release their energy.  About halfway through eating a young teenager and a little girl walk in who clearly had “something wrong with her.”  The little girl was running around like a maniac, taking off her socks on the “socks required” playplace and was even blocking the crawl tunnels, not letting the woman’s boys run through.  The mother was super annoyed and informed the teenager, who was repeatedly putting the socks back on the child, that the act of the child taking her socks off was “DisGUSting.”  Lots of snotty looks accompanied her comments.  As the teenager tried to take the little girl out of the crawl tubes the mom had some more comments and more looks.  

I walked in about 20 minutes later (because apparently it takes 20 minutes to get french fries and a chocolate chip frappe)  The little girl was Maria and the teen was Julia.  Clearly, the mom had thought that Julia was another negligent teenage mom and had a look of shock when I sat down with Julia and disciplined Maria for taking her socks off.  I did not know the previous encounters had occurred and I tried to make small talk with the woman because I recognized one of the boys she had with her.  At the time I thought she was just weirdly anti-social, but now I realize she was probably feeling awkward about the whole situation.  She gathered the boys and left.  Obviously, as soon as she walked out Julia told me about their encounter and I was furious!!!  Even if Jules was a teenage mom, who was this woman to treat her like that?  A teen mom to a special needs kid?  Perhaps she should be offering help!  I come back to this a lot… but why are mothers so judgmental of each other?

The woman had no idea of what our last few days have been like, nor should she.  We all have a story.  She didn’t know that maria had an eeg and sleep study on Sunday night which puts her in a anxiety ridden PTSD for days, sometimes weeks after.  (I am not exaggerating.. she actually has PTSD from all the EEgs).  I have been listening to her whine and cry for 72 hours.  When she is not whining she is acting out the procedure with her babies and fake crying.  SHe looks like she has a rash all over, because she has broken blood vessels on her face. neck and chest from screaming so much during the hook-up.  I am exhausted, waking for hours in the middle of the night last night worried about the results and I had just come from a funeral where I tried not to cry so that I didn’t ruin the music for this man’s celebration.  At McDonald’s I was relieved that maria was not whining, so I honestly didn’t care that she was taking her socks off… but i disciplined her for fear of public judgement, I guess.  When we got home she whined some more and then proceeded to urinate all over the kitchen floor, which is very unlike her.  So mom at Mcdonald’s.. how about we stop judging people.  In fairness, I do not know her story, but no one’s story allows them to treat others like crap.

At the funeral today I was reminded of Jesus’s last words.. “It is Finished.”  Jesus was referring to the fact that the prophecies and his journey had been fulfilled on Earth and then he breathed his last human breath.  Like Jesus, we all have a journey which we must go through with varying joys and hardships before we can say “It is Finished.”  I just wish we could all respect each others’  journeys and maybe even help each other out as we go along, not make then harder.

Let’s be real.. because I am fat you were judging me a little for getting fries and a chocolate chip frappe.  Well, they were for Maria and Julia.  So, stop judging.

Now, let’s be even more real… I ate some of their fries and am eating french vanilla ice cream as we speak 🙂

 

 

Cheers!

Today is a day of Victory! Today was the last straw, the straw that broke West Syndrome’s back. Maria has officially crushed WS by drinking from a straw!!!

This may sound ridiculous to some, but we have been trying to get Maria to drink from a straw, on and off, for 5 years now. Her destiny, as told to us at 7 months, was that she would most likely not be able to walk, talk or eat. (West Syndrome has a way of destroying nerves, especially in the mouth) She proved them wrong in all three areas, slowly, but surely. She chewed for the first time 20 months ago and on that day I cried like a blubbering baby. She graduated to sippy cup from bottle about 18 months ago and I cried,again. Maria learned to drink small amounts of liquid from a regular cup (“open cup” in therapy language)as well. But, the skill of drinking from a straw has been hanging over our heads for a long time and today I cried, again 🙂

Why was drinking from a straw so important? Well, first there are the motor planning and muscle strengthening benefits. Her articulation in her vocal language still has a long way to go and exercising the muscles through straw drinking is extremely helpful. There is the convenience factor. I hate having to remember to bring an empty sippy cup with us everywhere we go. But, most importantly, to Maria, is the social factor. When she begins first grade, no longer will kids look at the baby in the class with her sippy cup. She can whip out her juice box (or coconut milk box 🙂 like everyone else and not feel different. As delayed as her oral motor function is, socially she is extremely aware of everything. She knows exactly who likes her, who doesn’t, who thinks she is a baby, and who respects her as a peer. Drinking from a straw to her is as big as being toilet trained is to a typical child.

All children grow in spurts. They have a physical spurts, mental spurts, etc. Most of the time these happen so rapidly that in a typical child it is hard to see one specific gain as it overlaps with so many other gains. In children with Down Syndrome, the body can often only handle things one at a time. So, progress is very noticeable in specific areas. For example, I was getting frustrated this week as I was teaching Maria new sight words. She just didn’t seem to be remembering them from day to day and word recognition is a huge strength of hers. Lots of crazy thoughts were running through my head..is this it? Will she ever learn anything else new? maybe her brain has reached it’s maximum capacity?.. a lot of crazy thoughts. What i should have been noticing was that she has been gradually starting to call herself “Maria” instead of “Aria” and that she has been putting a lot more end consonants on words. She was having an oral motor growth spurt leading to this glorious night of straw drinking and that was enough for her body to take on this week. I need to remind myself more often that when I am frustrated about progress in one area I need to be looking for progress elsewhere. That being said, please God, let her drink from the straw tomorrow!!!

Maria continues to move forward at her own steady pace. I know she can accomplish all things, just in her time frame, not mine. Excuse my French, but today I think we can officially say f*** you West Syndrome, Maria won!!!

Sacrifices

Four daughters.  Nothing is ever going to be equal when you have four kids, but what happens when one child gets 90% and the other three have to split the 10%?

Our oldest, Christina, just recently finished a year long journey of applying to colleges and making the final decision of where to go.  There was no doubt in anyone’s mind that she was going to live away for college.  She has been wanting to move out for a while and I remember how I felt at her age and encouraged her to apply near and far.  I would NEVER have stayed at home at her age. Surely we would get enough aid, even the FAFSA said we would.  Well, after some exciting days of acceptance letters, a couple sad days of rejections, followed by a month of financial aid awards and negotiations the decision was made under a cloud of tears.  Reality set in that we are not rich enough, nor are we poor enough, to send Christina away to school without incurring substantial loans.  The schools did not care what the FAFSA said. HA! She decided to go to the local University, which is a great school, but just not what she dreamed for herself.  She is an amazing young woman though and is accepting it quickly and starting to get excited.

I know how blessed we are to have a child headed to college, but that didn’t change the elephant in the room during our discussions, Maria.  I had to quit my job when maria was born to give her all I had to get to where she is.  When she was diagnosed with West Syndrome, she still was not receiving medicaid and our medical bills soared.  Then, finally we found out what would cure her was not available in the US and not covered by any insurance.  We sacrificed.  We all sacrificed.  The lengths we went to help Maria are not filled with regret in the slightest, but on days when I have to tell my other children no to their dreams, I cry, a lot. 

When a typical child gets sick or something catastrophic happens no one would ever questions the lengths one would go to for their child.  Sometimes, with special needs, it is different.  When we decided to go ahead with the experimental drugs,  I remember that jerk of doctor saying to us “She has Down Syndrome just let her go.  You have three healthy girls and this will bankrupt your family.”  I hated that man.  But, the fact remains that some people just do not see her life as worthy, as say, Christina’s.  When Christina was born I was 22 and much poorer than I am now but no one asked me if I wanted to give her up for adoption.  Yet, with Maria, having a stable family, being 34 , I was asked that question before my c-section drugs even wore off.  I remember saying “Why, I know kids with Down Syndrome are slow, but what else is wrong with them?”  I was given “the book” of everything that could potentially be wrong with her and was told how hard it is on a family.  We would have to make sacrifices.

Ed and I have made lots of sacrifices and the only one that drives us insane is the lack of sleep one gets when their child has sleep apnea and some neurological issues that prevent her from sleeping soundly,  I have gained 30 pounds of stress fat and Ed walks around like a zombie most days with just utter exhaustion.  But, that’s okay, it is our child.  However, when I see her sisters make sacrifices….. well I go through a huge array of emotions. We can no longer just up and go anywhere we feel like.  I have missed many  sporting events my girls were in when i couldn’t find a sitter.  I usually try to avoid taking Maria either because she can’t  handle the noise of the indoor sport or she would just run away at the outdoor events and I would miss the whole thing anyway.  I am told this will get better, but I keep waiting.  My older girls have had to miss last minute social events because they had to babysit at home while I went to work.  I wish teenagers would plan things in advance, but that’s not how it works 🙂  (On a side note.. I dream of a day when someone will call Maria on a whim and want to do something with her.  Even her own grandparents have never taken her anywhere.  Her grandfather calls all the time to do stuff with the other kids and it has never dawned on him to see if Maria wanted to go.)  But, the biggest thing my girls have had to sacrifice is having our attention whenever they need it.  All three of them are pretty independent and not very needy but there are definitely days that they have to book a time slot to talk to me after Maria is sleeping.Even though I know they are loved no less I am sure it has made them feel second best.  As a mother, that’s a big punch in the gut.

Four daughters? Nothing will be completely equal. But the one thing that makes us all appreciate what we do have and the time we have with each other is our love.  Any one of us in this house would sacrifice again and again for any one of us if need be.  We are a family that has been dealt many blessings and the elephant in the room has taught us to be grateful for anything and everything we have.  That makes sacrificing a little easier 🙂  

Christina’s favorite band, The Avett Brothers say it best:   “Always remember there was nothing worth sharing, like the love that let us share our name.”

 

 

Giving Thanks

So tomorrow is Thanksgiving and most people I know are blessed enough to be having a huge meal (myself included) where they will get  to say Grace, stuff their guts, watch other people play sports and enjoy a drink or two.  Some may even begin shopping for the next overindulgent Holiday before their food is even digested:)  We are a blessed group of people.  That being said, many of us will still complain about our troubles.  I am going to try to truly think about my unbelievable blessings.

I have noticed over the years that the most horrible things that have ever happened to me or to people I love have also been the source of the greatest blessings.  If I write down on paper the “bad” things that have happened it can seem overwhelming, but I do believe that those are the moments when divine intervention has occurred. In the last several years…..

1. 9/11 -my father lost many business associates in the World Trade Center Collapse

2. I’ve had 2 confirmed miscarriages

3. I had a child born with Down Syndrome

4. I had a child diagnosed with West Syndrome

5. My best friend lost her husband and father to their infant son due to a sudden heart attack

6. My mother was diagnosed with a crazy rare deadly form of cancer

I could go on…. but you get the point.  But here is the reality of what has happened……

1. My father had a dental emergency on 9/11 and was not in the WTC at 8:45 am as usual

2. It’s been discovered that I have some gene mutations where my chances of having a child with a chromosome disorder is very high.  The children I miscarried were most likely extremely ill and it was a blessing in disguise that they were able to bypass this Earth and head right for the good stuff 🙂

3. As a friend once said ” Down Syndrome is the Cadillac of disorders” and she was right.  Although there are challenges -the rewards for  myself and everyone she meets are 100 fold.  When she runs up to a stranger in the mall and hugs them and you hear back “you have no idea how that has just made my day” – that’s a blessing.  Also, the amazing people I have been able to meet, honestly, amazing, because of our children.

4. West Syndrome has changed my life.  The absolute blatant intervention from above to give me and the doctors the wisdom to help Maria has without a doubt solidified my faith in something beyond this world. I was given wisdom and driven by something way beyond my power for about 6 months so forcibly that I could never deny that miracle, nor can I ever make anyone understand it.

5. My best friend Erika is amazing.  The thanks I can draw from that day, and I think she can too,  is that her son Evan is a healthy, growing beautiful boy.  Her husband, Gary,  died in bed sitting up with Evan (4 months at the time) next to him.  The fact that Gary did not fall over on top of Evan and continued to protect him even in death is beyond a blessing.  We have all learned to not take life for granted and can be inspired by watching Erika continually push on to give Evan all she can.  You don’t get a blessing like having a friend like Erika everyday.

 

6. Leiomyosarcoma -a rare and aggressive cancer. My mom was having issues with fibroids and had to get a hysterectomy. While under they discovered the tumor. If the surgery had been even a month later she may not be with us today. The blessing of fibroids!!!

Life has tested me. Life has dished out some crap. But when I look at my blessings, my luck, I realize I am the most blessed, the luckiest, person in the world!
Happy Thanksgiving!!!

September.. and so it begins.

I write today not to make a laundry list of complaints about our antiquated education system, but to further my goal of acceptance for all by giving a little insight into what it is like to get your special needs child a good education in 2013. 

I started last October by writing to my district’s special education department that I was not going to send my daughter Maria to self contained class the next fall for Kindergarten.  I was planning on mainstreaming in general education and I knew it was going to take time to make all those pieces fall into place and that this was going to be new for many people involved.  My email was ignored.  I bothered them a few times and then went over their heads to a school board representative and low and behold I got a call the next day 🙂  The months that followed consisted of them testing Maria to prove their case for a self contained class (where they would receive the maximum aide from the state) and me trying to gather evidence from teachers, therapists, advocates, other special needs parents and a great lawyer friend who helped me decipher the NYS education laws.

I received a call in march from the district’s school psychologist.  It went something like this:

Him” “Mrs. Schultz!! What a beautiful girl you have.  Loved testing her!  I usually don’t do this but I don’t want to blindside you at her review meeting.   I am recommending a self contained classroom for Maria at the meeting.  It will be non-academic based.  She tested ‘unteachable’.  She’ll learn great life skills like getting dressed by herself and how to go to the store!  It’s going to be wonderful.”

Me ” Are you serious?  She’s 4!  I appreciate your call but I will give you the heads up that i won’t be accepting that offer at the meeting.  I want her with typical children.  Being with typical children is how she will learn life skills and I think she is teachable.  She’s 4, I’m not giving up yet.”

A few days later i got another call from him playing some more games to try to get me to cave, including that “Maria could never handle all the new testing”.  Again, seriously, she’s 4 and I don’t give a rat’s ass about testing. The next day i sent a letter to the CSE chairperson explaining  that i would be bringing an advocate to the meeting from a group that the district knows comes backed with pro bono lawyers.

Wouldn’t you know it?  The psychologist thought about about it and changed his mind and felt the best placement for her was an integrated setting with typical children 🙂

I went to the meeting (with my advocate), got them to agree to a personal aide and all the services I wanted.  I got it all in writing and then dropped the bombshell that Maria would be attending a private school in a different district.  They were not happy.  They now have to reimburse the other district for whatever the new district decides is best for Maria.  This new district is not flipping the bill so they are more than accommodating 🙂

I was so relieved this was all over.  I got her in the school I wanted with all the extra help she needed (personal aide, OT, PT, SEIT, ST). Now, don’t get me wrong, so far I really like the school she is in, but I was a little surprised at some people’s reactions to her being there.  It’s not the kids, never is. They are awesome and love Maria, but some adults just don’t agree this is where she should be.  Every move she makes is  watched like she is under a microscope and everyone’s reactions to her moves are mixed.  If she sits for circle time and then gets up it’s viewed as “Wow, she sat for the whole circle time” or “Well, she just got up and walked out of circle on her own when we were done without being told to.”  Keep in mind that 2 other kids left the circle, but because they are “typical” they are “just being kids.”  

It’s exhausting!  Most people have accepted the idea of her there or are on their way to accepting it, but I feel like “it’s fucking 2013!! Why are there so many people who still can’t accept people that are different?  Why hasn’t special education realized that children (both special ed and typical) in integrated classes do so much better in life? Why are people so close minded? Why does anyone feel they even have a right to have an opinion about where I send my kid to school?  When it came to my older girls, I never had to beg, plead and threaten for someone to allow them the education they deserved.  Damn it!  Maria is only in Kindergarten!  We have a long way to go. Crap, I really need to start exercising so I have stamina for the next 15 years and beyond of fighting ignorance.”  ( my mind can get carried away sometimes.. 🙂

I’m not having a pity party, but I will never again complain about filling out a simple registration form for my other kids’ schools.  This is America.  It SHOULD be that easy to get every child an education they deserve.