Autism awareness

April 2...I honestly never associated this day with anything. Social networking is blowing up today because it is Autism Awareness day. Light it up blue, wear blue, facts streaming, one in 68 children now, yada yada yada. Maybe I'm a jerk, but my daughter is more than a label, she is my daughter. She is 6, funny, loves music, books, and going to school. She is not Autism. She has a diagnosis, yes, but I'm one of a few, I suppose that isn't ready to embrace the whole wear it proud ideal. I hate Autism. I hate that we can't go places because she becomes overstimulated, I hate that Grace can't communicate to me with words to describe her world. I hate Autism.
I thought that by now that I would have accepted this, but as of today, maybe not. Due to her late dx, did she miss out on interventions and therapies that would have changed her abilities? I don't know this answer. She had and still has a great team of therapists working with her, starting at 15 months. Some of the great therapies that I know about now might have put her in a better advantage if she would have started them five years ago. ABA, AAC...but these were not an option to her because of the lack of diagnosis.
With that being said, raising awareness is important, early intervention is important, just remember to treat the symptoms, not the child. This diagnosis did not change Grace or our family, only gave it a name.
Insurance still doesn't cover all of the things she needs, so what was the point of getting a dx? I thought it would help her. I'm still continuing to fight for her, for her rights, for things that will help her out in this world.
On a positive note, she has been approved for the CES Waiver, which also grants her Medicaid. Her caseworker told me this week, funding will start rolling in sometime in late July or early August! She will have more options to more effective therapies and opportunities.

Watch out, here we come!

Today was an emotional day, but a good one for sure. Joel and I, with Grace, met with an attorney regarding SSI and Medicaid. He specializes in this range, and a great lady referred us to him. He heard everything I had to say about Grace and our great trip through the medical circle. She still doesn't have a diagnosis, still a "medical mystery". We talked about how I can't have a job outside of the home, she needs 100% supervision and is still totally dependent on us. Emotions arise when talking about all of the things your child can't do. Similar to an IEP meeting. Don't dare talk about things your child is good or excelling at, they will receive nothing. In the midst of the conversation, the attorney picked up his phone, spoke to a woman, hung up and and told us he is going to set up a meeting with an Adams County representative. When I looked up her name, she is actually a State Senator! She has worked as a nurse and would be a great advocate for our family. I am so excited to see what will happen with our case, not to mention, the attorney isn't charging us for anything. As I walked out of his office, the tears came, tears of relief, tears of joy, tears. We have someone who is willing to listen to us! The wife of the attorney, who also works with him, stopped me in the hall, asked if he was taking us on, I replied "yes" and she embraced me with the biggest hug. I told her if nothing can change for us, maybe we can change the rules so someone else won't have to wait four and a half years for someone to listen to them. Maybe we can create new Medicaid laws. I would call it Grace's Law.

reflection

Oh 2012, what a year it has been! My journey with Grace continues, as well, a journey. Day to day is never the same. I think I have her figured out, and then she does something new. This can be a regression or advancement. I have tried finding outlets for myself in the last year or so with trying to be a "normal" mom. I am learning more that this is also a challenge. At the end of the day all I want to do is sleep. Crafting, working out at the gym, reading. The things I love to do are becoming a daily chore. I want me time, but I think that would require getting up around 4 am. Doesn't sound to exciting for me. With Grace staring Kindergarten this fall, I have learned to appreciate quiet, but look forward to her coming home at noon. She is learning so much at school, more social skills than academic, but she loves it! Losing my Grandma to cancer this year has put life into perspective. Something she said that I will always remember, "I'm not afraid to die, I've had a good time". Isn't that what it's all about in the long run? Have fun, enjoy life, don't sweat the little things. Enjoy your time on this planet, for it's only a trial for the great things we have to look forward to in eternity with the Father. I'm looking forward to 2013 and all that it will bring. Instead of a resolution, like others, I have two words that I will be looking forward to learning how to do. Be Still. Be still to listen, learn, and reflect.

I'm not ready for Kindergarten yet

I remember the excitement of Kindergarten registration with Ashton. I took the day off of work, toured the school, met her teacher, and went out to lunch.

Ahh, to be a young mom with a kindergarten newbie again.

Yesterday was Gracie's IEP meeting for next year, yes, kindergarten. It's a completely different feeling this time around. My last babe is going to school. Also, we don't get to pick her school. We were told what school she would be going to, as it is the only school in our district that offers a severe needs program. I have talked with several other schools and they don't offer services that will fit her needs.
If I was one of "those" moms, I would file a complaint with the ADA, find a good attorney and district advocate. I would force any school to take her and meet all of her needs. But honestly, I want to give this school a try. Her goals we put together are awesome! Clearly setting up a plan that will set all of her needs in place. Hopefully, leaving
no guessing for her new teacher, para, and team.

I'm scared, I will admit that. But kind of excited about what God has in store for Grace next.
I learned yesterday that her PT and OT will be seeing her next year too, one less transition!

With private speech, OT, and hopefully hippotherapy this summer, I can only imagine Grace walking into school on her first day in August and teaching her class! She will be set.
A lot of mixed feelings this week for me. Maybe I am ready for Kindergarten to start???

Change is good!

I don't know why I didn't write about Grace's first steps before. Maybe I was afraid that if I wrote about it wouldn't be true. Well, here we are one month later and She is still walking! I still get chills when I see her skinny little legs moving. Her smile is contagious when she is walking to me- she is so excited for this change, finally, a good change.
The Saturday after her first steps were taken, Joel asked me if I thought she would have ever walked. My answer was sincere; I had already come to terms in my heart that She may never walk. Do I dare ever put her in a box again? No way! This little girl is unstoppable! She has a story to tell, and she will!
With God, all things are possible. I truly believe that it is a miracle that Grace is walking. How does a little girl, who just the day before did not even walk independently, to taking steps across the room the next day between her daddy and I?
Her testimony is going to change lives.
Be encouraged.

In the classroom

Well, we are 3 weeks into the school year and Grace has yet to adjust. The first meeting I had with our preschool team was something like this; Teacher, "Hi Miss Grace, Shannon, how was your summer?" Me, "well, honestly, it was the worst summer by far. Grace cried and screamed almost every day, and I am exhasted! I hope her therapy team is ready to get her back on track, because without summer services we are back to where we were 3 months ago. Next summer I expect services, even if I have to drive somewhere". The teacher was surprised that Grace had regressed so much, me, I told them this was going to happen in May. I have two other kids, as well as my daycare kids, a house to keep up, and my vinyl business. I do as much therapy with Grace as I can, but it does not take the place of OT, PT, and speech.

I want this to be her year! Her year to progress, her year to shine! I know as a team we will get there...hopefully Grace is on board!

Recharge and Refresh

As I'm sitting here, my house is buzzing with a sound not often heard...it's quiet, almost too quiet. The kids spent the night at their Grandma's house last night, so I could go out with the girls. I came home at 2 AM, slept until 8:30...a true dream for this mom. Do I miss them yet? I'll be honest, and I'll say it, nope, not yet. Maybe in an hour or two, but not yet.
I had the morning to myself, ate breakfast, had my coffee, and read an entire magazine! Oh, and did I mention, I'm going to get my hair cut today too! Not in my kitchen, not at WalMart. A real salon with women in black shirts, and glasses, not cups, of water with lemon. Wow! Life IS good for this mom!
I often have this lingering "mom guilt" surrounding me, but not today. Today is for ME! Moms, all mom's, need a day to recharge and refresh. This makes me a better person, and therefore a better mom.
I have called and checked on the kids, they are fine. Slept in for Grandma, ate breakfast, and are watching Phineas and Ferb.
So, now I will sit in my quiet house...listiening to the glorious sound of nothing.