It's been a while...an update on Kit Cat & Grace

Sorry it has been so long since I last posted!  Things have been crazy with therapy appointments and back to school for both of my girls.  Gracie started kindergarten this year and is doing great.  She is a little bit upset that she needs speech therapy for some articulation issues that she is having with letter sounds.  I told her that both her uncle and I had to have speech when we were in school and we are fine now.  She was worried that taking speech meant she had autism.  After re-assuring her that she does not have autism, she seemed ok with having to take speech. She also began gymnastics and really seems to like it.  I thought she would be too afraid to do all of the activities during the session but she surprised me and did everything!  I think it will really help with her anxiety issues.  Some days are better then others in the anxiety department.  But overall, she is off to a good start for the school year.

Kit Cat is continuing with all of her therapies and horseback riding.  She also started a very structured and intensive preschool in the mornings (4 days week for 3 hours) at the daycare/school that she attends.  She really seems to love it and is following instructions well. It appears that she may be hyper-lexic (can read letters and words) so she is very smart.  She also began karate at her school this past week.  We also transitioned her from her crib to a toddler bed and she seems to really like it.  She hasn't gotten out of her bed yet, but that will come in time.  Yesterday morning Kit Cat showed me how she can now unlock the deadbolt and open the back door. So now we have to take precautions to keep her in the house.  I thought we wouldn't have to worry about that for a while but she fooled us.  That is about all for now. Thanks for reading.

DAP, ETR and IEP-Transition from Early Intervention to Public School System

I was notified yesterday that Kit Cat's DAP, ETR and IEP have been scheduled. The date for her DAP or play based assessment is September 19th while the ETR which is where we get the results of the assessments and find out if she qualifies for special education services is September 26th.  I have an advocate, two teachers from Cat's school, and her Early Intervention Specialist coming to the ETR.  I am nervous, scared and excited all at once. Everyone at Early Intervention and her school tells me that she will qualify and we will be able to get her Autism Scholarship that will cover her tuition and therapies when she turns three in November.  I hope that she does and my gut says she will but there is still the doubt in the back of my mind.

We have worked with Early Intervention for over a year and I am going to miss Leslie, Brooke and Lauren who have been there for us and worked with Kit Cat.  But Kit Cat also has wonderful people at her school that she will still see and work with her: Kate, Lynlee, Sheri, Stacy, Ellen, Jennie, Adrienne and Jane.  I can't believe that we are making this big leap but it will be well worth it. It is just hard to realize that Kit Cat is not a baby anymore and is truly a little girl that is growing more every day in a variety of ways.

She has come so far in a year when we began this journey.  She now has 20-30 words, points, has improved eye contact, uses PECS to communicate, plays with toys more appropriately and interacts with her family and friends more each day.  My main goal is to give her the tools to help navigate this world and for people to accept her for who she is, autism or not.  As long as she is happy that is all that matters in the end.

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.