It's been a while

It has been over a year since I have updated the blog or even the Facebook page.  I decided to take a hiatus and focus on my family and me for a while.  It turns the hiatus was just what our little family needed.  Kit Cat is now 5 years old and in her last year of pre-kindergarten.  She will start kindergarten at her current school next fall. We decided that keeping her at her school for another year before she transitions to full inclusion at a local Catholic school would be the best thing for her.

Kit Cat is now fully verbal. She strings 4-8 words in a sentence now and communicates completely through her verbal skills. We are still dealing with severe apraxia but most of the time we know what she is telling us even if people who don't know her can't make out what she is saying.  Another new development is that Cat has become somewhat toilet trained thanks to her teacher at school, Miss Janie.  Miss Janie got Cat on a regular schedule and got her toilet trained, which was something we couldn't accomplish at home.  Although she still has an occasional accident and doesn't always tell us she has to go she can tell us through non verbal cues that she needs to go.

Kit Cat is still riding at the horse barn and can completely steer the horse right and left and can go where her instructor tells her to go while on Sugar the pony.  She adores riding and it has helped with her social and communication skills.  Cat still likes to play on her own but she will engage with her sister and friends at school when they ask her to play with them!  We still have a long ways to go on the communication and social skills front, but she has come so far in the last 6 months. It's wonderful to see her engage with her peers at school and play with her big sister Gracie.

Here are some photos from the past year of Cat and Grace.

 This was taken at a local Dance Marathon Bikes for Tikes event. Kit Cat was assigned to Team Redhead as their Miracle Child.

 Telling Kit Cat's story at a local college's dance marathon for Children's Miracle Network.

 Kit Cat's most favorite holiday is Halloween. She eat, sleeps and breaths everything Halloween.

 Kit Cat riding Sugar the pony.  Horse back riding is one of the best therapies for Cat and she is darn good at it.

 Cat showing off her gross motor skills at her 5th birthday party that we had with her friends from school.

 Kit Cat loved celebrating New Years.  She is still doing the countdown and telling us Happy New Year's even though it's no longer New Years.

 The official Santa photo for 2015.

 Kit Cat pretending she is a superhero during Christmas at her grandparents.

The girls love going to the zoo at least once a month.

2 years past diagnosis and kicking autism's ass!!!!

Two years ago, on November 16, 2014 Kit Cat was diagnosed with Autism Spectrum Disorder.  That day was one of the worst days of my life but probably the best day for Kit Cat in a way and for her family.  The reason I think it was the best day in a way is that it got us off the whole "shit or get off the pot" mentality. We had been riding a roller coaster she is autistic, she isn't and with the doctor's words of "Cathleen has mild autistic disorder" we jumped right into intensive early intervention.

We started PLAY Project that very day and added PT, OT, speech, and sensory integration therapies within weeks of the diagnosis. Our quick actions and that of key people at Cat's daycare (which is also a school) saved our daughter and have given her a bright future. Two years ago she was completely lost in her own little world and didn't answer to her name.  Now, she knows her name and bugs the hell out of us, which is a miracle to us and we love that she will throw a PECS card at us or grab our hand and walk us to where she needs help with something.  Her verbal skills are also emerging more every day. Hopefully some day soon she will be considered to be fully verbal, if not that is ok as she can communicate with us between gestures, PECS and her words.

So I want to take the time to thank all of Cat's heroes: her big sister Grace, her Daddy, Stacey, Lynlee, Sheri, Heather, Carol, Kevin, Ellen, Teri, Paige, Brooke, Lauren, Dr. Solomon, Dr. Olson, Janie and the rest of the staff at Cat's school and our local children's hospital thank you for pushing us along the way, for pushing us to get that diagnosis and for helping our miracle, Kit Cat to fully blossom these last 2 years.

Back from a hiatus

Finally back after a self imposed hiatus.  Lots of things have been going on, some good, some not so good that forced me to take a break from the whole Facebook for Kit Cat Our Miracle and the blog.  I had to re-evaluate why I was doing this whole thing.  I realized that I needed to get back to what I was trying to do in the beginning and just have it be a place to record Cat's progress.  By early August of this year, I was trying to get more likes and have contests, in order to get more likes.  That was not the original purpose of this diary of a sorts. So, now I am just going to post when I feel like and not care who is commenting, how many likes we have gotten and how many people have viewed it.

Cat has started another year at her school. This year she is doing all day pre-kindergarten four days a week. The morning session she is in a typical classroom with all typical peers with no aide or special education teacher. She has done really well in this situation and loves circle time. Although she is not initiating play with her peers, her peers will engage her and she will join them in play.  The afternoon session she is in a special education setting with typical peer models but with an aide and a special education teacher. It is more structured and they work on her IEP goals which are primarily focused on communication, socialization and adaptive/self help skills. She loves the afternoon sessions too. It was a rough start at first because she was used to nap time in the afternoon, but now that she has adjusted she is doing great.

Cat is still doing her horseback riding lessons with a therapeutic bent.  She will compete in her second special needs horse show competition next month.  She is also doing  PT, OT and speech at her school while doing outside speech therapy at our local children's hospital.  As always, we use Play Project to interact with her and its her main therapy that she gets at home.  It has become a way of life, so it has become natural to just do it with her everyday.

Finally, we are half ass attempting to toilet train her.  I don't think she gets the concept completely but maybe I don't give her enough credit as she is very smart.  But some things are harder for her, and this is one of those things.  We have two years to get her trained before kindergarten, so I think it will happen this coming year for sure.

Overall, Cat is doing great. She can now answer yes/no questions, she can tell people her name when asked and she is stringing 2-3 words together. She may not be considered fully verbal but she is getting there slowly.  Her severe apraxia makes getting the words out difficult, but we think with the extra speech she will overcome that giant hurdle with time.  Cat plays with toys in an appropriate manner and has taken an interest in the various holidays and loves to spend time with her grandparents and uncles in addition to us.  She is still obsessed with Minnie Mouse, but we have added horses, Doc McStuffins, My Little Pony, and Power Puff Girls to the mix.

Well, that is all for now. I can't believe my little miracle will be four years old next month! She has changed so much and is truly my little hero and light of my life.

The SPD Duo

My laptop is finally working and it has been an incredibly long time since I have blogged so I thought I would get to it since Kit Cat is occupied with my phone playing Minnie's Bowtique app.  I am sure that everyone is familiar with her Minnie Mouse obsession.  Well anyways, let's get to the main point about this post.

Sissy as Kit Cat calls her big sister has recently been diagnosed with Sensory Processing Disorder, so that makes for 2 little girls in our house with SPD.  It didn't really come as a shock as Andy and I had approached Cat's therapists about it since she had all of the classic signs of it.  She was terrified of loud noises, has major food aversions, meltdowns galore (more than Kit Cat) and is also a sensory seeker just like her sister.  Grace doesn't have autism as she has been talking since she was 10 months old among other things.  So Grace has started OT and will start doing hippotherapy through her sister's school on alternating weeks.

Now that we know there is reason for some of Grace's behaviors we have become more consistent with her and kept her on a fairly predictable schedule.  We have also gotten the girls a mini 48 inch trampoline and they jump all of the time on it and seems to help tremendously.  Now that I have had time to process it and knowing that it is on the mild end so I am ok with it.  Sure, some things in life can be challenging with both girls, but this way Grace feels like she is getting some of the same attention as her sister, although she is disappointed that she is not autistic.  Grace is still Cat's best teacher and has taught Cat so much.

I love my girls regardless of whatever label is put on them, because at the end of the day, they are just Grace and Cat, sisters and best friends forever.

Autism Awareness....Why we still need awareness.

I recently emailed all of my contacts in my email to let them know that Wednesday, April 2, 2014 is World Autism Awareness Day and to please wear blue if they felt like raising awareness for Cat and for all of the kids who have autism.  One "friend" (no longer a friend after this) replied back with the following response " Respectfully, this is not an issue that I am as fervent about as you are. Please don't email me things like this." I replied back "The respectful thing to have done was to simply delete the email. I will not be emailing you back so please do not contact me ever again." Her response back to me was: "Sounds good. I have raised an extremely ADHD child and have been a tiger mother over his special Ed programs. I am a cancer survivor. I have never emailed those in my address book regarding these issues. Your challenges have been well documented on a daily basis on Facebook. I have the right not to have my email be co opted by your personal campaigns. Sorry this upsets you but not everyone is as involved in your life as you are."

This just goes to show you that many people still need to be educated and aware.  She is lucky that her child was never diagnosed with Autism and is able to have a "normal" life and has risen above the challenges they had in school.  I don't need people in my life who are not supportive of Kit Cat and our family.  Through her diagnosis and being open about our struggles, we have found who are true family and friends are.  So please keep spreading awareness as there are many who need to be educated.

On a positive note, Gracie and me appeared on her school's morning video announcements to talk about Autism and to introduce the students to it and to Kit Cat.  Kit Cat will be attending the same school in about a year and a half.  The students are very open to Autism Awareness and are wearing blue tomorrow to show their support.  So thank you St. Patrick of Heatherdowns Catholic School and to everyone who helps to make others aware.

Light It Up Blue tomorrow!

Communicating all the time and even telling us no and remembering Jeffrey

I know it has been a long dry spell since I last blogged. We lost my brother Jeffrey who had Downs Syndrome on November 23, 2013.  He was Kit Cat's special buddy and uncle. They were very close and she would sit on his lap and they would jabber back and forth having their own conversation and laugh at the rest of us.  He is now in a better place although Kit Cat looks for her Uncle Jeffrey, which she has just recently learned to say.  It is difficult to go on each day without him, but each day is a little bit easier as I see parts of him living on in Kit Cat, especially the stubbornness and orneriness.  Her toes curl over the top of each other just like Jeffrey's do and they even eat food the same way.  I can tell Jeffrey is her guardian angel and is helping to push her along.

Jeffrey and me at his 20th birthday.

Jeffrey and his baby Grace

Jeffrey and Kit Cat

 Jeffrey and Kit Cat

 Jeffrey and Kit Cat

Jeffrey and Cat

Jeffrey and Cat

 Jeffrey loved Nascar. Jeff Gordon was his favorite driver.

Cat putting the feathers on the Turkey at school.

 Cat doing some music therapy while playing a game at school.

Cat riding Sugie.

 Art time at school

Kit Cat is now up to over 50 words in her vocabulary and if she can't use the word to tell us what she wants she gestures to let us know.  She is also using her PECS (Picture Exchange Communication System) binder at home and she has one at school. She is using it to make choices, to answer questions, to tell us more and all done and even yes and no.  She also tells us "na na" for no and "stop" when she doesn't want to do something that we tell her.  So she is even arguing with us, just like her big sister Grace.  I am so happy to see her communicate and it just makes my heart burst.

Cat is also starting to play tag and hide n seek.  She still loves her iPad and her tv shows, but is spending lots more time engaging with those around her, but on her terms.  We had her one year follow up with the developmental pediatrician, Dr. Solomon and he was astounded by her progress. He said she is on the verge of becoming high functioning autistic so we have to keep engaging her everyday on her terms and draw her out of her little world at times.

A year ago, I would have told people they were crazy if they told me then how much progress she has made.  She is a miracle each and every single day.

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.