Kit Cat's Team

I attended a care coordination training for parents a few months ago at Nationwide Children's Hospital. While at the training, I had to draw a map of who was all o Kit Cat's team.  Before I drew the map, I thought our team was rather small, but once I saw it all drawn out. I realized we had assembled a large team whose main goal was to ensure that Kit Cat is happy and reaches her full potential.

Kit Cat's team is made up of family, friends, Early Intervention, her school, therapists, teachers, doctors and online support. Family is her Dad, me, big sister Gracie, grandparents, aunts, uncles and cousins.  Friends are the few close friends that her father and I have and who understand Cat's diagnosis and are not part of the disbelievers that we have written off.  Early Intervention is Brooke, Lauren and Leslie who provide us with Play Project, service coordination and just to be there for support when we need it.  Kit Cat's school consists of her PT and OT therapists, and all of her classroom teachers, some of whom are trained Intervention Specialists.  The medical community provides Cat with her hippotherapy and speech therapy plus her wonderful pediatrician and developmental peds doctor who help us with everything in regards to Kit Cat.  Facebook has been an amazing supportive team for me and has been helpful in educating other members of our team that have had our backs since Cat was diagnosed.

If it wasn't for Kit Cat's team, I don't know where we would be right now. So, thank you all for believing in us and being there for us.

Kit Cat's Therapies

We a variety of therapies for Kit Cat's early intervention.  We do a combination of PLAY Project (www.playproject.org) through our local County Board of Developmental Disabilities, PT, OT, speech, hippotherapy, and her school's play based program called PALS (Program for Autistic Learners).  We have found great success in using a combination of these therapies.  99% of her therapy takes place during the work day so I have had to use a lot of FMLA in order to take Cat to PLAY Project visits, speech, OT, PT and hippotherapy.  When she turns three this fall, her therapies will all switch with the exception of one (hippotherapy/therapeutic horse back riding) will be based at her school and will enable me to resume a fairly normal work schedule so that we can start paying down our expensive therapy bills that we have incurred since Cat's diagnosis, which has been incredibly worth it. 

"The P.L.A.Y. Project® (Play & Language for Autistic Youngsters) is an evidence-based developmental intervention for families of young children with autism spectrum disorders (ASD). The P.L.A.Y. Project is the pragmatic application of the theory of DIR® (Developmental Individual Differences &Relationship-Based)/Floortime™ and emphasizes the importance of helping parents become their child’s best PLAY partner." (Taken from the following website: www.playproject.org) We do PLAY Project everyday, seven days a week.  It is the basis of how we interact with Cathleen and we break it up into many 15 minute intervals for 2-3 hours a day.

PT, OT, and speech are 30-45 minutes each and she does each of them once a week.  Hippotherapy/Therapeutic horseback riding is 30 minutes once a week as well.  The PALS program at school(http://www.sensationalkidsdaycare.com/) is a play based, peer socialization (including typical and non typical in the classroom) and classroom work.  They also do play drills and some individual pull outs modeled after ABA (but its not as rigid as true ABA) and music therapy, sensory diets and structured routines. The main goal of the program at Sensational Kids is to help kids on the learn and cope with the things that can autism can make difficult or affect their socialization, communication and learning. (conversation with a teacher at the school).  

I would love to hear what other families do in regards to therapies and intervention for their children on the spectrum.

Response to Despicable Drake and J. Cole’s “Jodeci (Freestyle)” Lyrics

There have been many disparaging remarks over the years from despicable and ignorant people about people with special needs.  So, Drake and J. Cole’s is not the latest hate speech but considering that Drake has a huge influence in social media, I am very angered by his lyrics. 

The lyrics in question are:"I'm undoubtedly the hottest and that's just me bein' modest / Go check the numbers dummy, that's just me gettin' started / I'm artistic, you ni**as is autistic, retarded / Started, hold your applause…"

 Hence, I have named Drake and J.Cole despicable.  I left the following comment on Drake’s page on Facebook “I find your use of the word autism and r word are despicable. You disgust me with your attack on my child who has autism and for all children that have autism. Hope karma comes back to bite you in the arse!”  J.Cole was too chicken shit to have his Facebook page open for comments so I sent him the same quote via Facebook message. 

I am sticking by my words and I hope that karma does come back to bite them both in the arse!!!  I would also like for them to apologize for their horrible remarks about all children on the spectrum and that have special needs.  The “R” word is just as bad as the “N” word and the use of that word needs to stop now!! 

Writer Lisa Quinones-Fontanez sums it up best with the following: “When anyone uses autism or the r-word as an insult it perpetuates the stereotype that individuals with disabilities are worthless and stupid. You discredit every single thing that so many parents have fought for, shut every door that has been opened. You squash a dream. Break a heart.”  (http://shine.yahoo.com/parenting/drake-uses-autistic-retarded-song-autism-moms-outraged-160200954.html)

Kit Cat's Obsessions

Kit Cat has several obsessions in life: Sofia the First, trains, cars, trucks, My Little Pony, horses but her main obsession in life is Minnie Mouse. Kit Cat has loved Minnie Mouse since she was about six months old.  She calls Minnie Mouse "Min Min".  She loves the show Mickey Mouse Clubhouse and Minnie's Bowtique.  She has about twenty different plush Minnie Mouses, books, clothes and just about all of the Mickey Mouse Clubhouse toys that can be found at the Disney Store.

Today, Kit Cat spent the remainder of her birthday money. Guessed what she bought?  If you guessed more Minnie Mouse stuff you would be correct.  She bought two sets of Minnie Mouse bath toys and some more balls for her sensory ball pit (Mom & Dad picked out the balls).

This first pic is from Christmas when Kit Cat got her Rock Star Mickey Mouse.

 This next pic is two of Kit Cat's Mickey and Minnie rattles.

One of Kit Cat's new obsessions is riding horses.

Her 2nd birthday...she got Minnie and Mickey cars and a road map rug for them.

Finally, Cat is asleep in one of her favorite Minnie outfits and surrounded by her Minnie Mouse car, Mickey Mouse car and her Minnie Mouse/Daisy Duck sand bucket.

Embracing the Diagnosis

Embracing Kit Cat’s diagnosis has just been a recent event.  I guess I have gone through all of the stages of grieving the diagnosis. Sure, I am still going to have my good and bad days about the diagnosis since that is human nature.  But I finally say that autism is just a part of Kit Cat and one of the best parts is when she is “flap happy”.  I love to see her so excited about Minnie Mouse or swimming and she gets all flappy. She is so cute when she is flapping.

I have also stopped wrestling over the whole therapy thing too. I kept hearing about how ABA was the way to go and I just could not wrap my head around it.  I don’t want my daughter’s autism conditioned out of her like Pavlov’s dog.  I feel that ABA is not a good fit for Kit Cat. I know that ABA has done good things for a lot of kids on the spectrum but I am going to go with my gut on this and stick with our play based therapies of Play Project and the PALS program at Kit Cat’s daycare/school.  Those two therapies are helping her connect with us and communicate her wants and needs. 

Finally, by fully accepting her diagnosis and celebrating Kit Cat for who she is, I have finally found some peace with it.  With finding the peace, I can focus on becoming a more effective advocate for our daughter.  By being a better advocate, I can make sure that Cat has all that she needs in order to be the best that she can be.

Disbelievers

I don’t know how many parents of children on the spectrum have people in their families, friends or workplace where people question your child’s autism diagnosis.  I have had several people question Kit Cat’s diagnosis.  I call them the “disbelievers”.  The disbelievers say some of the following: 

1.      Your daughter doesn’t look autistic.

2.      She is very social and makes a lot of noise so there is no way she is on the spectrum.

3.      I think you are making this up so you can have an excuse to not be at work.

4.      You can’t diagnose autism in a child until they are at least five.

5.      You don’t need to be taking her to therapy all of the time.

6.      Kit Cat will be just fine, if you leave her alone and not force therapy on her.

Here are my responses to some of these statements from the disbelievers. 

1.      Autistic children don’t have a certain look, they look like you and me.

2.      The intensive intervention has helped her to become more social and she is a noisemaker when she stims.  Not all children with autism are nonverbal.

3.      I prefer to be at work, making money.  All of the time I take off is UNPAID and it has destroyed our savings and we have thousands of dollars in therapy bills.  If I was using this as an excuse I wouldn’t be racking up medical bills and would be out having fun, such as shopping, dining and going on vacations.

4.      Children are getting diagnosed younger and younger.  Developmental pediatiricians can use MCHAT, ADOS and other observation/screening tools to diagnose in younger children as the majority of children start showing signs of autism by 12-15 months of age.

5.      If I don’t take her to therapy, she will not be able to communicate with us and will sink further into her own world.  The therapy is giving her a fighting chance to become a productive citizen in this world and the ultimate goal with all of the therapy is for Kit Cat to be happy with her life.

6.      We don’t have a choice about therapy as her autism will not just magically disappear overnight.  All of her therapies are play based so she is having fun being herself while learning how to socialize and communicate.