An ode to November

Kit Cat has been sick the majority of this week, which sucks because she turned 3 on Wednesday and has missed all of her therapies and preschool for this week.  I have also had to use more of my FMLA unpaid leave this week, so that puts a huge dent in my next paycheck too.  But I am glad that I have the FMLA in order to care for her and know that I still have a job to come back to.  It seems every October-April since Cat was 4 weeks old she has been constantly sick, whether it be her asthma, intestinal flu, pneumonia, RSV, and good ole sinusitis.  The doctor has called in an antibiotic for Cat in hopes that it will start to work and help her feel better in time for her birthday party on Saturday.

She did feel well enough before the fever came back on Wednesday to celebrate her birthday with Andy, me and Grace. She opened up one present and got distracted with the toy and did not care to open anything else.  This is typical for Cat and we have learned to hold Grace back and let Cat go out her own pace in opening her presents as she likes to explore new toys and books. If its clothes, she doesn't care and so we don't even wrap those anymore.  She got some new dress up stuff, books, some clothes and some Disney Fairy figurines. I think for the first time she had some idea that it was her birthday. Earlier in the day, we looked at baby pictures of her from the day she was born and I told her it was her. She pointed to the baby in the photos and said "Cat"!!!  She also identified Momma, Da Da, and Sissy aka Gracie.

Also in November, it was one year anniversary of Cat being diagnosed with Autism. Although I had some sad moments, I mainly reflected on how far she has come since that day. She plays with other kids sometimes when she didn't even acknowledge them a year ago. She answers to her name, she is starting to talk and she no longer has a receptive language delay.  She is no longer completely lost her in her own world, she is engaged in the real world and we celebrate everything about her from her flappiness when she is happy, to her telling us "Na Na" (her word for no) when we tell her to do something, and everything in between. She truly is a little miracle and is God's gift to us.

IEP, the pit and an update

The girls are currently fighting over the iPad, with Kit Cat using her words "I got, I got, I got" and Grace saying "Stop Kit Cat it's my turn".  My reply to both of them: "Share the iPad or I am taking it away" which they are currently doing.  I figured since they are entertained at the moment, that now would be an excellent opportunity to knock out a blog post that I have been wanting to write for a while.

We just had Cat's first of I am sure to be many IEPs.  Many of the readers probably know what an IEP is but for those that don't, I will briefly explain.  An IEP (Individual Education Plan) is for children that have special needs that cannot be provided for in a typical school environment, so an IEP is created to insure that children with special needs have access to a free and appropriate education like that of their typical peers.  The majority of IEPs that I have heard about are filled with stress and frustration and I was told to be prepared for the worst as public schools have their own agenda and will fight you on what you think is best for your child.

Cat's IEP went better then I expected although the evaluation to qualify for services was a bit rough due to an unpleasant speech therapist who dismissed Cat's ability to communicate on some level and basically told me that everything we were doing with Cat was wrong and that Cat had no ability to communicate.  So when we went into the IEP I was ready for battle along with Cat's teacher Miss Lynlee from her private school.  However we were able to get what Cat needed for her goals and for her to have speech and OT.  So we are all set for next year and her IEP and Autism Scholarship begins on November 20th, which is Cat's third birthday.

I have noticed that I have been in an emotional pit since September which I think has finally passed.  The whole IEP process had me depressed in addition to the fact that one year ago in early October started the year from hell when the following events happened: My brother with Down Syndrome almost died three times from double pneumonia and seizures, my Dad almost died from a heart attack, Cat was diagnosed with Autism and Andy lost his job and became an over the road truck driver and I was being bullied at work. But I am trying to stay positive and I hope that the next year will be better.  My brother is doing better, my Dad is in better health then he was before the heart attack, Cat has come so far since her diagnosis and Andy is making a decent paycheck even though he is only home on the weekends and the bullying at work has stopped.

The girls are doing great in school.  Gracie is learning to read and having a blast at school.  Kit Cat is doing well in her first year of preschool and all of her therapies.  I am looking for a new job since my current one ends at the end of June 2014 since it is grant funded.  The girls are excited about Halloween, especially Grace. Grace is going as Twilight Sparkle from My Little Pony and Cat is going as Princess Sofia from Sofia the First.  This is the first year that Cat chose her costume by process of elimination.  Hope everyone has a great fall!

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.

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.

Kit Cat's biggest cheerleader and best friend

Kit Cat's biggest cheerleader and best friend is her big sister Gracie.  From the moment that we told Gracie that we were pregnant with Kit Cat, Gracie has been crazy about her baby sister.  Gracie calls Kit Cat "her baby".  Gracie was the third person to hold Kit Cat after her birth, held her bottles for her, played with her and has always been in her sister's face.  Without Gracie, we feel that Kit Cat's autism would not be as mild and that without Gracie pushing her along, Cat would not be making so many gains in her social and communication skills.

Gracie loves to do Play Project or any kind of therapy with her sister. She is always asking if she can help with Kit Cat in any way possible, whether it be bathing, dressing, or bedtime at night. Gracie is so kind, patient and loves her baby with every fiber of her being. Kit Cat lights up at the sight of her sister and is always trying to imitate her and its always Grace that can draw Kit Cat out of her world with little effort.  When Gracie is gone at Camp Grandma's, Kit Cat is constantly looking for her big sister.  Without Gracie in our lives, I don't know how any of us would cope, but especially Kit Cat who needs her big sister to teach her the things that Mommy and Daddy can't and to be one of her biggest cheerleaders and first best friend.   I am so happy that they are so close and hope that continues as they get older.

Love of water

One of Kit Cat's greatest loves is water. She is the happiest when she is in the water, splashing around, without a care in the world.  From the moment of her first sponge bath after birth when she was the only baby in the nursery who didn't cry when being washed through today when we went to Maumee Bay State Park to play in the lake, she experiences 100% pure joy.  I think its a great sensory experience for her and its one of the times that she is not overwhelmed with everything around her and she feels connected to her body.

She began swimming lessons at 6 months of age at our local YMCA and took to the water like a fish.  She has a good doggy paddle going on when she has her life jacket on or when her Dad or I are holding her.  She also tries to swim in the bath tub as well.  She splashes so much in the tub that I probably should invest in a wet suit so that I am not completely soaked when its over with.

The water is also one of the times that we can engage her pretty easily with silly games and songs as well. It is how we taught her some of the body parts and some of the songs that she loves.  Water is also one of the only ways we can calm her down if she is having a major meltdown too. When the meltdown happens and we can't stop it, we fill the tub up with water and put her in and this instantly calms her down.  I am so grateful for something so simple that she can connect with and to us.