Thursday, November 1, 2012

1 Year later...

Let me tell you, the Autism diagnosis ain't nothing compared to everything that follows after. It is kind of like the golden ticket on American Idol, you're handed the diagnosis and off you go! However, there is no one to really guide you. You're kind of in it by yourself. It can be lonely at first. Loneliness turns to anger. Anger turns to determination.... and well, you've never seen determination as much as that of an Autism Mama!

We are coming up on 1 year this month from the actual diagnosis from CHOP. It has been a crazy year. A busy year. And a beautiful year.

I've gone from counting my kids words to not even being able to count them all now! A crayon and a utensil is not such a scary thing anymore. Putting my child on the bus is not so scary anymore. Getting the notes home from school that Lia is transitioning well, makes me very proud.

Lia and I got to this point together. I helped her and she helped me. We've grown from each other. She is 3.5 years old now and flourishing. There is certainly a long road ahead, but baby steps will get us there together.

Friday, September 28, 2012

Moving Forward

Wherever I go, whatever I do, I am reminded that Lia has Autism. I'm reminded when I drive to therapies, when I'm on the phone with insurance and when Lia is in the corner dancing to the beat of her own drum at dance class. Some days I feel that Autism runs US, but little does Autism know that I will be kicking its butt in the months and years to follow. Because you see, Autism chose a beautiful, intelligent little girl to get its hands on, not knowing her parents have educated themselves in everything they can on the matter.

This little girl has made progress in leaps and bounds. Her speech is developing every day, her motor skills are developing every day. I fear one day soon she will ask me a question that I don't even know the answer too- good thing daddy is Mr. Smarty Pants.

There are days when I stress about Lia's future- hoping that she will be able to live a productive independent life. But those same days, Lia does things to amaze me and squashes those thoughts instantly. Lia has gifts inside her- bursting to come out and make their presence known. She is a special girl.

There are days when I've let Autism get the best of me. Thrown in the towel, sobbing to my husband, asking 'why'? But then I ask 'why not'? My daughter is great. I wouldn't have it any other way. She shows me a different way of looking at the world and looking at myself. She has taught me to slow down my pace and just be. She can cheer you up in a second and her big belly laugh will have you smiling for days.

Sure, there are days that encompass all kinds of challenges. But right now, we are meeting those challenges head-on. We are getting the best school structure, therapy and activities that we can for Lia. We are being the best parents that we can be, and we are doing a damn good job at it!

Wednesday, July 25, 2012

Dear Teacher, please don't make me be annoying...

 **FYI- this was pertaining to my daughter's Extended Year Summer Program, not her regular classroom**

Dear Special Ed Teacher,

Yes, my daughter talks. But she can't really tell me about her day at school. Please give me a note. DAILY! Parents thrive on information about their children. Sending her off to school with a complete stranger is enough anxiety for me already, so please tell me about her day. I'm not asking for a novel, but something that can make me picture her day.

Did she cry? Did she eat? Did she play with children? I need to know these things. All of the artwork is cute, but my daughter doesn't sit for more than 3mins, and she has deficiency in her fine motor skills- so what is she doing during this time of crafts?? We are working on potty training- I need to know how this is going in school as well.

She is getting PT, OT and speech- I have heard no feedback except from the speech therapist. I don't think this is asking too much. Shouldn't the therapists be advising me what they are working on, so I can incorporate it at home?

Lia started singing a song last week that I had never heard. It turns out it is the Welcome Circle Time song at the beginning of school. This was my biggest glimpse into Lia's day at school so far.

So please, dear teacher, write me a few sentences daily. Let me know how the day is going- good, bad, whatever- I want to know these things. And I don't want to become an annoying parent in asking- I just want it given to me.

Thank you,
A concerned loving parent, not trying to be annoying :)

Friday, July 20, 2012

An Ode to Laurie Berkner

Dear Laurie Berkner,

My 3 yr old daughter is obsessed with you.

#1. Laurie Berkner
#2. iPad
#3. Mommy.... yup I'm 3rd.

She has autism and is verbal, but does have a speech delay. Your songs have put words into her mouth beautifully. She wakes up singing "One Seed" and goes to bed singing "Family". All of your songs are so silly and free- and those 2 words describe my daughter perfectly.

So thank you.

Thank you for...

Letting your music allow me to do dishes

Letting your music allow me to do laundry

Letting your music allow me to vacuum

Letting your music allow me to clean the house

Letting your music allow me to have a conversation on the phone

Letting your music allow me to cook dinner

Letting your music let Mommy have a few moments of peace

And most of all, thank you for letting your music let my child have words.

Thursday, July 12, 2012

Summertime or Some Therapy Time?

In the middle of our crazy summer schedule was the Chop follow-up appt. Did I expect much from it? Nooope. Did Lia behave during it? Nooope. Was I instructed to do anything I'm not already doing? Nooope. Was told to come back in 1 year. 1 more year of endless therapies and such, just to hear that I'm "doing a good job". I've started to rely less on the medical community and more on my own mommy instincts. Afterall, doesn't mommy know best?

Between Preschool, Speech, OT, PT, Therapeutic Horseback Riding, Relationship Development Intervention and Music I think I've got it all covered. Lia's schedule is more like a college freshman, than that of a 3yr old toddler. Some day's I think I'm doing too much and other day's I feel like I'm not doing nearly enough. I'm trying to balance the lazy days of summer with enough non-lazy days.

The summertime is fun with Lia. She loves the beach, and screams out "OCEAN!!!"
The beach is a place where Lia can just be Lia. Free of all her therapies, she can run and scream and jump, just like any other toddler you see at the beach. I love the beach- I don't have to worry about stares and judgement. Lia blends in with all of the other excited children on the beach. And for this, mommy can just be mommy.

Thursday, June 28, 2012

Lollipop woes

The bank teller sent a lollipop back with my transaction today. When I got home, it went in the trash. Just like that, I was reminded how such a simple task of giving the lollipop to my daughter in the car would not happen. She wouldn't have held the lollipop long enough to even eat it. Just like she won't hold a crayon to color or hold a utensil to eat. 14 months of therapy and this is where we are at. Her fine motor skills are still very immature- but it is a work in progress. Some days I have more hope than others. Some days I feel like my daughter could walk on the moon if she wanted too, other days I am just hopeful she will scribble with a crayon. I see parents of children who take for granted such simple toddler activities in life; climbing the jungle-gym, drinking from an open cup, doing a small craft, eating spaghetti with a fork- if my daughter did these things I would be celebrating. Sounds silly I know. I know she will get there... one day. It is the journey of getting there that is hard.

Monday, May 21, 2012

What to expect when you're not expecting it

So for 9 months you have every book under the sun about pregnancy, Dr appointments and labor. By the end of the 9 months, you can recite what fruit your baby looked like week-by-week.

You then have "Newborns for the 1st year or so" types of books to get you through every sleepless night, every fever and every little speck on your baby to know what its about.

What I didn't have was an "around 18 months something seems off" type of book to reference. What I did have, was my motherly instinct and thank God for that. Lia passed her 18 month M-Chat appt and despite my endless babble at the pediatricians office- they assured me Lia was on track and "just quirky".
Parents! If your instinct is telling you something- go with it! The Dr doesn't spend every moment with your child- and you know them best. Lia spoke early, sat up early. She did not crawl until 13 months and did not walk until 16 months; which under the big umbrella of ranges- is still ok. However, around 18-20 months Lia seemed to stop saying some of her regular words, but could count 1-10 effortlessly. She loved spinning. She was very picky with food and did not use utensils. Her motor skills- both gross and fine, were very clumsy. Simple stacking toys were a struggle for Lia.

A friend suggested I place a referral into "NJ Early Intervention"- something I had never heard about before and probably most people do not know about. They came to my house for an initial evaluation in March 2011 and advised Lia was eligible for services. And so began the whirlwind of Lia's therapy schedule for the next year. She did developmental therapy once a week, Occupational Therapy twice a week and Speech therapy once a week. She did some extra speech therapy last summer and did a month of Physical Therapy before preschool started. Lia was on the wait list for CHOP and St. Christopher's for neurology and developmental appointments. Again, Parents! If you are having doubts- contact someone right away- because it will be a long wait list with any facility. 6 months later was the St. Christophers Neurology appt and 9 months later was the CHOP developmental appt.

And so ensued the Acronym's of medical terms...

Lia's OT diagnosed Sensory Processing Disorder (SPD) in July 2011.The neurologist advised us in August 2011 he believed Lia had PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) because of her good eye contact, laughter, etc this is what he diagnosed. In November 2011, CHOP diagnosed Autism Spectrum Disorder (ASD) and Mixed Expressive Receptive Language Disorder (MERLD). All of the diagnoses were not really a shock to me- I was just waiting on confirmation. While you feel like a good parent going to these Dr appointments- I cannot say that they really provide you with much resolution. I have had to navigate the path of therapies, appointments, insurance, IEP's etc by myself, from my own research.

Early Intervention runs from birth to 3 years of age- then they transition kids to Pre-School. So 3 weeks ago, all of the therapy for Lia ended and the transition to preschool with school-based therapy began. In addition to preschool, I have her doing OT and Speech privately and she has been doing Therapeutic Horseback riding since August 2011.

Autism now affects 1 in 88 children and 1 in 54 boys. More children will be diagnosed with autism this year than with Aids, diabetes and cancer... COMBINED. More research and funding needs to be done- as all of these kids will be adults soon and better opportunities need to be available.

Lia has accomplished so much in therapy and continues to amaze us every day. I don't look at her with a diagnosis- I just look at her as "who she is and was meant to be". I am lucky to have supportive family and friends who have shared in this journey with us.

"Autism Awareness Butterfly Womens Vneck Dark Ts Shirt"