Wednesday, June 17, 2015

Chief Executive Advocator

I'm seriously thinking about having business cards made for myself with Chief Executive Advocator (CEA) printed under my name to hand out at school meetings and as part of my signature on emails since that seems to be my main job these days.  

The past few months have been a flurry of IEP (Individualized Education Plan) and/or transition meetings for 6 of my kids.  Transitions for the upcoming school year include Lily and Dasha going from elementary to middle school, the twins graduating from high school and heading to college (still advocating though!) and Leo starting Kindergarten. I'd be lying if I didn't say it was fairly stressful keeping it all straight right now.  It's hard enough keeping track of one kid, but right now we have 6 kids with IEP's and a lot of changes coming up this fall for which I've been trying to make sure everything is tweaked perfectly (I wish) and everyone has all of their needed supports in place.  In other words, I've been advocating for my children's rights.  It's kind of like the story of David (me) and Goliath (the schools).  At times, when you're sitting in a room full of experts focused on dissecting every little facet and nuance of your child to death with all eyes on you, you can get a little overwhelmed and just a bit depressed wondering why things can't be easier.  


Personally, I'd rather just show up for the annual ice cream social at the start of school and bemoan the fact that my child got so and so as a teacher or rave happily that 2 of my daughter's best friends are in her class.  It kinda sucks planning in great detail desired goals and expectations for every aspect of school including what supports will be allowed and used for your child, how many minutes of speech and occupational therapy a month they'll receive and whether they qualify for things like special transportation. And then there's the million dollar question and subsequent decision with all IEP's:  How much time will your child be included in the general ed classroom vs. the resource/life skills classroom?


Inclusion is the hot topic these days and everyone seems to have a different definition of what that means to them, but for me inclusion is definitely not a one size fits all version that says that either you are 100% included with your typical peers or the school has failed inclusion.  I believe inclusive practices should be shaped and molded to each individual child.  This isn't only about cognitive, physical or verbal ability.  It's about what is the best placement for each child to excel, learn and grow to reach their highest potential.  

Having 6 kids with IEP's and varying disabilities, I learned that what is best for one of my kids could be a disaster for another.  The two pictured below just graduated with a Core 40 diploma from high school.  Having autism, they qualified for special education, but we pushed hard for them to be fully mainstreamed with special education as an enhancement to their regular education classes.  Thankfully the schools agreed.  BUT I believe they agreed mostly because of the high level of intelligence, school readiness skills and the verbal ability both boys had. They were fully included every step of the way except when they were pulled out for things like speech and social group especially in those early years.  Reagan (the one on the left) even had a full time aid until he left middle school.  Once they hit high school, all they had to help facilitate their continued success were guided study halls with resource teachers and a social group.  They are a perfect example of what full inclusion can do for a child with a disability.    



BUT..    

(and that's a big but)

In my opinion not all inclusive practices fit or work for every single child with a disability.  

I think demanding, shouting, pleading and cajoling for 100% inclusion is unrealistic in some cases.  This was a hard pill for me to swallow for a few of my kids.  Back when I was advocating for the twins and their placement in school, there was only one option in my mind and that was full inclusion.  No ifs, ands or BUTS.  

Then Lily and Dasha started Kindergarten and I slowly altered my opinion.  After much discussion with me advocating heavily for full inclusion for both girls, Dasha was allowed to be in the kindergarten class while Lily was only partially included with her typically developing peers during calendar time and "Specials", but the majority of her time was in resource or what was later referred to as the life skills classroom.  

Now I'm going to insert here my belief that if every school would employ a true expert like Dr. Paula Kluth in their midsts, then the schools would get a very eye-opening version of what inclusive practices truly mean and how beneficial it is for everyone instead of the bits and pieces they currently offer.  The research supports this fact:  Include, Belong, Learn and Inclusive Education Research & Practice.

What was surprising to all of us was while Lily bloomed in life skills, Dasha regressed and started having major behavioral issues in gen ed.  She even bawled hysterically a few times and Dasha does not bawl in public.  We met with the school and after weighing our options, pulled Dasha out of the kindergarten class and moved her in to the same classroom as Lily. The school just wasn't willing or equipped to give Dasha the level of support she needed for full inclusion.  After seeing how well Lily was doing in life skills, I allowed the change because Dasha wasn't learning anything at that point other than to be obnoxious and disruptive. Behaviors we'd barely even seen with her.  Behaviors are a form of communication and she was communicating to us how unhappy she was in kindergarten.  Once she'd adjusted to the life skills classroom, she reverted back to her mostly sweet self and started to finally pick up academic skills like knowing her ABC's, colors, reading sight words and attempting to count. She continued inclusive practices in some areas and started behaving and participating better in Specials (art, library, music & gym) with her typical peers, started eating her lunch at a lunch table with typical peers and enjoyed playing with her peers out on the playground. Those were all strong areas for her to be around typical peers.

While it wasn't the placement I preferred, I realized that the pressure and expectation of the regular ed classroom was too much for her.  I think part of it was the schools lack of vision for inclusion for a child like Dasha, but also I think Dasha's personality, adoptive and orphanage background, hearing loss and overall needs prevented a good fit for 100% full inclusion.  The only way Dasha could possibly be fully included was if the school had a paid TRAINED para/aide as a one on one for her in the regular ed classroom and I'm not even sure that would work due to the above mentioned issues Dasha has to bring to school every day.  




I'm fairly okay with that because I incorporate our own version of full inclusion these days. She is fully included in typical dance and gymnastics classes with other girls and loves it.  We still have behaviors that need to be addressed, but I think a big part of using inclusive practices for Dasha needs to be done out in the community because that is where she excels.  Academics frustrate and confuse her and sitting in a chair listening to a teacher talk when you have hearing issues is torture for her. I'm convinced it all sound like Charlie Brown's teacher did in his class.  Wa Wha Wha Wah Wah Wa...  She fidgets, messes with anything she can get her hands on and often talks to herself to occupy the time.  How is that a learning experience for her?  Per society, her disability already sets her apart from her peers because her interests and aspirations are on a completely different plane than her peers.  For example, she still plays with dolls and stuffed animals and loves Mickey Mouse Clubhouse and Doc McStuffins.  Most 10-12 year old girls tend to immediately notice the developmental differences and some can almost be patronizing at times.  Thankfully, once they got to know both girls, their school peers accepted them wholeheartedly.




As for Lily, the impact of having Down syndrome and autism makes full inclusion almost impossible.  This is a child that can struggle within the life skills classroom dynamics and expectations so I can't even see attempting putting her in a typical 5th grade classroom and expect anything good to come of it.  She's easily overwhelmed by sight, sound and touch. Noise and crowds distress her unless it's a Barney concert.  I'm really okay with her being included only during Specials with her typical peers because that's about all she can handle. Why would I over-stress her to the point of her shutting down and learning nothing?  Now I will draw the line of her doing menial tasks in the school because she's in life skills.  I will not accept my two girls doing recycling or cleaning lunch tables as part of their schooling.  

My goals for both girls are to learn how to read at a level to read a book of their choosing, speak intelligibly, behave appropriately in social settings (for the most part) and have a few friends in their lives.  I also expect Dasha to be trained and educated at a level to hold a full time job.  I honestly don't ever envision Lily working a job with her level of needs.  Personally, I think she can just be loved as the quirky aunt or cousin Lily in our family.   

Obviously, there are some with Down syndrome that have college aspirations and dreams and that is wonderful for them.  They should be the ones that get full access to 100% inclusion in the classrooms because that helps them achieve their academic goals.  

Dasha and Lily, on the other hand, need to learn other things that are meaningful and appropriate for them especially skills and academics that help them function in this world.  I also think there is some benefit to being around other kids with disabilities similar to theirs for part of their days.  They aren't stared at, puzzled over or whispered about because most kids in life skills just don't care about popularity or how you look or dress and it's pretty refreshing when my girls enjoy their peers who are like them and even those who don't make eye contact, talk or barely acknowledge them.

As the girls move on to middle school, we are branching out a bit with Dasha.  She will be included in reg ed Specials where Lily will be getting more adapted Specials.  Dasha will still be in the life skills classroom, but will be expected to have increased responsibilities like working a locker, walking to Specials independently and going to a guided study type hall to do some of her academics.  I think the life skills teacher is going to push the girls more academically than they've previously had and I have a really good feeling about their transition except for the crack of dawn bus pick up.  Lily isn't going to like that one bit since she's such a night owl.



Finally, we hashed it out regarding Leo's placement in the fall and let's just say it got a little hairy during the meeting.  I wanted full inclusion with a full time (trained) aide.  I worry a lot about Leo being with a bunch of other kids with autism stimming as a group, learning new behaviors or feeding off each other.  We discussed the pros and cons about him fully included with his peers with a full-time aide. Leo is nowhere close to having the same school readiness skills Reagan and Kaelan had at 6.  He speech is still emerging, but there are no real conversations going on with him.  It's usually echolalia or him asking (or demanding) for wants and needs. He's also has started singing, which is adorable and I love, but won't help much in class.  He can barely write and still hasn't figured out his handedness.  I think he's left handed and others think he's right.  Ambidextrous is a common theme right now when using his hands for any task.  He needs pretty intensive intervention to even participate or tune in during classroom activities. Hand over hand practices are very common except with art.  This boy loves art and loves to get messy while loving his art.  He is not a fan of sitting in a chair for any length of time and tends to be in constant motion.  

After considering all of that, I acquiesced on the full inclusion.  Right now his IEP states he will go to the reg ed classroom for calendar and Specials.  He will also participate in recess and lunch with his typical peers.  Otherwise, he will be in the resource (not life skills) classroom.  He will get to go to swim therapy once a month with the life skills class and that is a particular favorite activity for him.  He also will have music therapy, speech therapy, physical therapy and occupational therapy throughout his week.  In resource, they will be working on his many specific academic goals.  We will be reassessing about 6 weeks in because I still have my reservations.  

I know some won't agree with my stance about inclusion and that's fine.  Because I have have multiple children with IEP's, I'm careful with picking my battles because I'm realistic enough to know my relationship with the school needs to be on pleasant terms.  I'm placing my children in their care for several hours a day and I need to feel good and trusting that they will be enjoyed and respected while they're there.

PS: If you are wondering about who has the 6th IEP, that would be Izzy.  She is fully included because her ADHD-Inattention and learning disabilities don't impact her as severely as the other 5 and I was relieved when she qualified for an IEP instead of the dreaded 504 plan.


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Wednesday, April 22, 2015

April's Been a Month of Celebrations and Fun

I decided to write this post with our most recent event and working backwards to April 1st to be different.  Be prepared for lots of pictures. :)

Yesterday, Dasha went to the orthodontist for a check up.  A few years ago she wore a non-removable palate expander for 9 months and we now are just monitoring until the time for hardware is needed.  He said her mouth and jaw looked great and to come back in 6 months.  Matt then took her to Peyton Manning Children's Hospital to have blood work done to check her thyroid level since she is being treated for Hypothyroidism (this happens every 6 months).  I just got called by the nurse they are upping her Levothyroxine (generic for Synthroid) to 50 mg from 44 mg.  Not uncommon to have a need to adjust meds as puberty (Lord help me!) changes occur.  

Dasha wasn't overly happy with the blood draw so Matt let her pick a treat for being so good.  After much discussion, she decided that a chocolate cupcake with chocolate icing and sprinkles would make it all better.  


Earlier in the month, Dasha was asked if she wanted to dance with the Colts Cheerleaders again for the Colts Cheerleader Showcase held at the Circle Theatre Friday night.  It was the final competition round for the cheerleaders before the squad was picked for next year's season.  She got to reunite with her favorite Colts Cheerleader, Meagan last Wednesday to practice her dance (it was the same routine from December, just to different music).  After a enthusiastic hug with Meagan, they got busy practicing their dance and then moved on to do another Soul Train performance...Dasha's favorite part by far.




video

Then last Friday night, Dasha, Izzy and I headed downtown to the Hilbert Circle Theatre (which by the way is beautiful) on Monument Circle in Indianapolis and watched the talented women compete for the coveted 28 spots.  There were 52 trying out, so it was fierce competition.  It reminded me a bit of a Miss America contest with lots of dancing added in.  I think by the end of the evening both girls desired to be Colts Cheerleaders.  Right before the final results were given, Dasha went up on stage with all the other performers from Down Syndrome Indiana and Fierce Allstars, who either have Down syndrome or other disabilities, and danced their hearts out.  They even got to do a Soul Train. For those who don't know what that means, it's where you line up into two parallel lines and then partners come down the center dancing any way they want.  Here's a clip of Dasha and Meagan doing their turn:


video


Dasha after the show...she was exhausted.

We celebrated Easter and were surprised when Lily and Leo participated with the egg coloring. Lily did one and was done.  Leo, on the other hand, colored multiple eggs.  He absolutely loves crafts so this was right up his ally.  I think he, Dasha and Izzy would have colored several dozens eggs if we'd had them.  




Easter morning 7 baskets filled with candy sat waiting to spike everyone's blood sugar.  Then Leo, Dasha and Izzy went egg hunting in the front yard.  This was Leo's 2nd egg hunt ever and he did pretty well participating.  He refused to hold his basket so Matt had to walk around carrying his Royal Highness's basket. ;)






We then had brunch with my mom, a few of my siblings and their families.


We attempted Easter Mass, but I spent most of the Mass out in the Narthex with Leo.  He's starting to find his voice (Yay!), but has a hard time understanding whispers vs. shouts.  After multiple words, sounds and gibberish were expressed from Leo's sweet mouth, I shushed him a few times and that triggered dramatic exaggerated shushes from him to me (finger on his lips to make his point as well). Being that we were in the 3rd row, I quickly exited even though I was quite proud of his brazen verbalness (not a word, but whatever, the kid's not nonverbal anymore). 



We had a big double birthday celebration for the birthday girls a few days before Easter!!  Moogie (aka my mom) turned 75 and Dasha turned 12 on April 3rd.  #twins








Can you tell Dasha is a such a ham?


Grandma & Grandpa came over too!



Mom and me. #love

Two days prior to Dasha's birthday, we celebrated our April Fools boy's 6th birthday.  Leo was enamored with his birthday balloon.  Sadly, it lasted less than a day due to Leo's rowdy love fest he doled out all day long to his poor balloon.  Gentle is not in Leo's vocabulary when it comes to balloons.

Birthday cake was a hit (no surprise there)!

Leo blew out his candles by himself for the first time.  I was a bit worried about singed hair, but he did great!

His favorite gift.  $8 at Meijer on a whim.

A few random cute pictures from the month.  


Izzy at the doctor for her 6 month check up about her ADHD/anxiety medication.  It went well.

Leo playing a drum with his left hand and the piano with his right.  I said he was following in his daddy's footsteps as a one man band. :)

Goofball Dasha zooming around with her brother's helmet on made us all laugh!

Speaking of her brother, Riley just purchased a new (slightly used) Go Kart.  His first race was on April 12th and he was happy with his results considering they got the Kart ready to go just minutes before the race began.




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Monday, March 30, 2015

I Was Meant To Be An Autism Mom

As my 5 year old son and I walked out of gymnastics last night where he takes a private 1/2 hr class, it was cold, damp and a bit windy in the looming dusk.  Freezing, I excitedly said "Let's run to the car Leo!" and took off gripping his hand tightly.  Beside me, I heard this stilted little voice say, "Let's run.....fast." "Fast."  I glanced down in surprise to see a slight smile gracing Leo's lips as his messy mop of wavy hair is blown back to reveal his pretty features on his sweet face.  (Almost too pretty for a boy, we often joke.)  And so we ran fast to the car, holding hands, laughing all the way.  


I'll cherish that moment because while it's a simple story to share, the significance of hearing Leo respond to me showing he comprehended what I asked and then followed through with the suggestion is certainly wonderful. That he added the word "fast" (twice!) is HUGE in the communication department!

It's moments like that where I'm reminded I was meant for this hectic, sometimes overwhelming but highly rewarding life.  I was meant to be an autism mom.  You may even be shocked to hear, but I actually revel in it these days. Autism doesn't frighten me anymore. Autism doesn't make me sad.  I'm done grieving.  In all honesty, when you stop and think about it, autism is pretty darn fascinating.  Of course, there are hard and frustrating moments, but the joyous moments are greater.  There are still meltdowns, but happy and content are more the norm.  I've gotten used to their exuberant noise and embrace it.  Silence is over-rated anyway.  Meeting milestones are cause for celebration and delays make us work all the harder.  We've become a well-oiled team in our house and there's not a lot of guess work anymore with what works and what doesn't with our four kids who have autism.   



It wasn't always like that for me.  When my 18 year old twin boys were diagnosed all those years ago with autism, I was devastated, angry...and a bit bitter.  I didn't want to be an autism mom.  That was not what I signed up to deal with at all.  I wanted someone or something to blame for stealing my boys' smiles, speech and outgoing personality.  But after getting over the initial blow, I jumped in with both feet, determined we were going to help them achieve their highest potential.  Of course, back then the only things I knew about autism was from a few internet searches and from the movie Rain Man, and that was definitely not a good model of autism to predict the future capabilities of either boy.

I've earned many titles over the years as I took on many roles for my kids.  I became a strong advocate, a novice therapist; learning tricks of the trades of speech, occupational, developmental and physical therapies, a feeding specialist, a nurse, a negotiator, an arbitrator, a teacher and a protector from the bullies.  I learned to juggle our time and coordinate a crazy busy schedule packed with developmental preschools, regular schools and therapies.  My kids work challenging full time jobs learning how to talk, socialize, process and regulate their senses and coexist in a oftentimes confusing world. With the help of resource and special education teachers, we became proficient in balancing academics, homework load and down time as the twins moved through each grade at school.  

I'd say I'm kinda like a wedding planner coordinating and assisting all aspects of a big grand wedding.

I also fostered interests, collections and obsessions because whatever brought them joy brought me joy.  I've bought books, boardgames, fidget toys that were stretchy of every color or texture, Thomas The Tank Engine stuff, iPads, Barney galore, coins, puzzles, computer and video games, Hot Wheels, and hoards of stuffed animals including a big quite real looking hairy tarantula puppet that actually gives me chills (ick).

I'm sure I made some mistakes over the years and possibly missed or ignored some ground breaking therapies to try, but as I look at my 18 year old twin sons, who have autism, I'm in awe.  To have come so far from their premature birth, major developmental delays and autism diagnosis to graduating from high school this June and heading to college in the fall, I know we did something right.  My husband and I are so proud of their hard earned accomplishments. We rocked their autism as a team and I believe they'll continue to blow statistics out of the water with their successes as time goes by.



We are also forging forward with a new version of autism or as we call it autism enhanced with Down syndrome with our daughter, Lily.  While suspicious she had autistic traits (Down syndrome and autism can both have sensory processing and communication issues), we didn't push for a formal dual diagnosis until recently.  At 11 years old, we are using our autism knowledge to tweak her therapies and her needs because I've noticed with her dual diagnosis that Down syndrome is currently taking a back seat to the autism.  I'm grateful for my experience with the twins because that experience has guided me in supporting Lily more effectively as well as helped us in understanding some of her behaviors better.  Since she's not able to communicate very well or learn in the same way as the twins, it's nice to have that prior knowledge as we map out a plan to meet her highest needs right now so she too can achieve her level of success with her level of abilities in every aspect of her life.  We're simply gonna dazzle her dual diagnoses with everything we've got in our autism toolbox.   



Finally, we're getting a fourth chance to rock autism all over again with Leo, who is our youngest.  In some ways he's similar to his older brothers, but in other ways he's completely different, so comparing isn't always an option or a wise thing to do.  There's also newer therapies and different techniques to try. Treatments and therapies are always changing or evolving similarly to the way individuals with autism change and evolve, but for us the stakes are the same.  We're going to help Leo achieve his greatest potential whatever that may be and enjoy watching him bloom.

Bottom line:  I love being an autism mom and frankly, I know I'm good at it.


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