Happy Anniversary

Today is an anniversary of sorts. Three years ago Connor was a happy little boy who played by himself, showed a great facination for playing cards, and other random items. He always knew how many of what he had and if some were missing we searched until we found them. He smiled but didn't speak. We never thought we would see the end of diapers......Three years ago he was diagnosed as being Autistic.

As parents, we were just beginning to figure out how to deal with his diagnosis. We were so bent on figuring out how to get the hours of ABA therapy in that the psychiatrist reccommended. So frightened that we weren't doing enough or the right things for him.

Three years later...Connor is still a happy little boy. He is beginning to play with and initiate play with others. He plays with his toys, loves superheroes, the Wii (who doesn't?), jumping on the trampoline, playing outside, and the list goes on. He still has those big heart melting smiles. He has such a good vocabulary (selectively used) I can't quite refer to him as non-verbal autistic. He says "no" particularly well (little stinker!) We did see the the end of diapers thank goodness! Now I just need him to flush the toilet. Ah well... its an imperfect world.

As for Marc and I.... we figured out that what works for him is time and patience along with an aide who has very good instincts and speech therapists who love what they do. We assume that he can learn as well as his peers, and deal with what he can't do as it comes up. We give him the tools to give him extra help in school as he needs it. We help to bring awareness to the school and church community by helping to start programs to benefit him and other children with disabilities because my Conor isn't the only child with a disability, and maybe we can help a few "newbie" parents figure it out or at least  let them know that they aren't alone.

We've all come a long way in three years, so happy anniversary to us and I look forward to many more happy anniversaries.

Walkin the Walk

WALK NOW FOR AUTISM SPEAKS 2011

Its that time of year again that some of  us have marked on our calendars with such importance as holidays and vacations that we note on our calendars religiously. That special time of year when our friends and family (and extended family) gather round not for large meal, but united in supporting a common cause. Fighting Autism. Standing together to raise funds to defeat ignorance, find answers and provide a light at the end of the tunnel for those parents families that are just starting this journey.

Honestly, I am no social butterfly. I hate asking anybody for anything with a passion. Autism changes your family though as those of you with autistic children know. Now you can see with a different set of eyes and as for myself; it has become crystal clear how lucky we are. Prior to participating in this walk I had no idea that so many families had no guide, no "plan" and nobody showing them which way to turn. I never knew how low goverment funding was. The real shock came when I attended my sons preschool orientation at the autism program he attended last year. The questions that were asked of his teachers and later of me were frightening to me because I remember being there and oh do I remember feeling the way that they did. Its a feeling that comes back so intensely that it will well up in me a stream of tears that just keep on coming.

So, for my son, for your sons and daughters, for the sanity of all the parents of diagnosed children now and the ones that unfortunately will be, I will ask for your support.

Support me and Team Rainbow at:

www.walknowforautismspeaks.org/columbus/teamrainbow1

A Means To An End

Connors first week at school is going well. VERY WELL. In fact, his teacher told me that she wanted to use his aide to help the other children in the classroom from time to time since he is able to work well independently. GREAT! You bet! My aide is your aide, at least until the money starts to run out and then we will talk about only having her there a half day at which point I will remind you of how you thought he was able to work without her. :)

A means to an end.....Mrs. G, Connors teacher told me how suprised she was that he fit in/worked so well with the other children. It wasn't at all what she thought it would be (uh-huh, I do recall mentioning that) and that she was so glad that she listened to Paulette who also said he would do well at this school (uh-huh I said that too). She felt that this school was absolutely the best fit for him hands down (uh-huh I definately recall saying that).  This is what I would like to have responded with: Yes Mrs.G he seems to really be doing well here, but I kind of had that figured out and consulted with his preschool teachers and director half a million times prior to signing him up here. You see, I feel I know him best. We have history. Heck, i've known him since he was concieved, we go way back. That and the fact that I am a stay at home mom and I with him practically 24/7. Share the aide? Why sure! Didn't you know that she is really here for your comfort? I knew that you would figure out that we didn't need her there 5 days a week 6 1/2 hours a day. In fact, most of the things that I have done were for your comfort level, the principals and the rest of the staff. You are smart people though and you will continue to learn from my son, just as I have. I can wait.

Paulette (my sons preschool director) is every bit the experienced professional. People SHOULD listen to her opionion. Thank God I did.I am grateful that  Mrs. G. did but some mean little part of me says that it would be nice to be credited with having some reliable input though and a brain. You know what? My son is doing well totally mainstreamed, ready to go to school, visably interested, participating with the others, and that is worth more that I can concieve of. Its all just a means to an end.

School Daze..........

Well...... here I am on the brink of Connors first day of Kindergarten. Tons of work since the beginning of February to get him into this school and here we finally are and I still believe it will all be worth it. He needs to be at that school in order to thrive. I know it. Don't ask me how, I just know it.

First of all I must give credit where credit is due. "Team Connor" (and you better believe its a team) is awesome this year. While it saddened me greatly to leave a fantastic program with teachers that were remarkable, his kindergarten teacher is special she was when my daughter was in her class, but lately I have come to see her in a new light. This lady was quick to step up to the plate when I asked her how she felt about Connor attending school there. She offered to observe him in his current program. She talked with his current teacher. She attended several meetings and an teacher inservice to learn more about the Autism Spectrum and how it related to my son. She has asked on many occasions what she might do to better accomodate him in the classroom. Does she have special needs certification of any kind? Nope and thats fine by me. I am not looking for special certification,I am looking for understanding, willingness to learn about my son and his ways and someone who is willing to get past Autism. My son is not the big scary monster, the word Autism is.  The principal at the school; young, naive, willing to try something new even when his plate is full as a new first time principal at our school. That makes him awesome in my book. To all the other teachers in the school who will be working with Connor and who took the time to attend the inservice; I also thank you for stepping up to the plate. Thank you for expressing your desire to help him succeed in this school. You will never know how much I appreciate it.

I just met Connors aide today. Sarah. Experienced, smart, a real workier bee. I was completely impressed that rather than have a firm plan on how she would work with Connor, she will let him take the lead. Really, does it get any better? 

So, if it all goes wrong, if the school plan falls all to pieces at least I will have these precious moments of hope that I have right now. Oh yeah, and that margarita in the fridge.............;)

Return to Wonderland

Well....what can I say. I took a little hiatus. I enjoyed the summer with my kids, took a few trips, generally lounged. What inspired my return? Well i'll tell you since you were wondering....... I read a new blog out there in the vast abyss of blogs. This one was special and quite thought provoking. This blog was about a little girl, Paloma, born 4 months ago with Downs Syndrome. Her mommy is my cousin.

  Its very difficult with some blogs because they so well written and I also because I can relate especially when it comes to having a child with special needs to not cry my ever-lovin eyes out. Boy, did I ever with this one. She and her husband experienced so much at their daughters birth that my husband and  I experienced 3 years down the road with my son. I cried because I know that she is at the beginning of a very long journey, one that holds no answers for the future, humbles you, yet reveals to you in a new way how very complex and wonderful life can be. It opens your mind like no mind altering drug could possibly do oh yes, and forces your mind to be creative to a degree that would rival that of DaVinci. Along the way no doubt she will meet some very ignorant  people. Ignorant because they aren't able to see what her daughter is able to do now and might do in the future. They will focus on what she isn't. When her mommy is able to gather her strength, she will fight for opportunities and understanding for her daughter. She will regret along the way, no doubt but she will find hope and laughter in situations when laughter and a positive disposition have gone right down the toilet.  I hope that she is as blessed as I have been. I hope that she will find those who see beyond the down's, those angels that walk the earth that help parents like us find our way. They are out there.

  So here's to you Paloma and April. You are on a long complicated journey girlfriends, but we are on it together.

The Last Day

Well, yesterday was Connors last day at preschool. Its ironic that while our kids played (in the vincinity of each other, for the most part) the parents and teachers were the ones that cried. You see, some of our kids are moving on to Kindergarten and Connor is one of them. As a parent, I can tell you it hurts so very much in so many ways. We feel like we are little fish being thrown into the ocean. Now, just as we felt that our children were in a comfortable safe place and we felt that the teachers who were so gifted and we had become so close to, we had to move on. I watched teachers and parents cry but I tried so very hard to pretend that we would be back as usual the next day. If I had really let myself go emotionally I am sure I would have completely lost it. Now, we will be on unfamiliar territory. Some of us will learn far more about IEP's and how very much they will mean to us and our children. Some of us will forgo the normal route of schooling and set out to make a change in a school that doesn't know very much at all about the autism spectrum. This is the route I have chosen. I am scared. Did I make the right choice? Was it really for me or for Connor? What happens if this experiment fails?What next? I have done all the paperwork, arranged the financing, talked to the teachers and principal, hired an aide, and even helped to start a support group. I'm not sure what else I could possibly do. Still I am scared that it will all fall apart and then our choices will be few.

A Few Ugly Truths About the World of Autism

Ugly Truth No. 1

  I went to a assistive technology conference the other day on a fact finding mission. I hoped to learn what Ipad like communication devices were out there and why they were appealing enough to local disability boards to pay for.  I came away from it with confirmation of what I had already suspected. Autism is a money maker and this holds true for other disabilities as well. Oh how this makes me sick to my stomach. Be informed, be educated about whats out there and beware. Balance what you think is working with your child, or might work with what the professionals tell you that you need. I have come to the conclusion that until there is a cure for Autism, then my input is just as good as anyone else's.

Ugly Truth No. 2

 Having just been through another IEP meeting, and school meeting I can tell you that the powers that be will distance themselves from being responsible for paying one red cent more than necessary if they think they can possibly weasel out of it. This is true of the public school system and private schools. They do have one thing in common though. They will more than happily take any funds they can get from the state but gripe about having to follow the guidelines set by the state. You can't have your cake and eat it too folks.

Ugly Truth No. 3
 We are "fortunate" that our state offers a Autism Scholarship. Let me explain why I am not overjoyed with this program. First, there is a cap on this money. Sure it sounds like a whopping amount and like it will give you some real options. Then there are the rules and regulations of the program which are many and varied. I chose to send my son to a private school. I am sending him here because he needs to be in a typical classroom all day. He needs to model off of these kids. I am also sending him there for a religious education, because the academics are more challenging and the school has recourse to remove a child if bullying should become a problem. However, I need an aide and a consultant. The aide and consultant must be on the approved provider list. Guess what you find on the list? Companies that are charging more for aides than the public school system, "program set up fees", etc. because they can. They know as long as they are on that list they can charge what they want and the scholarship will pay for it or medicaid waiver services. See ugly truth no. 1.   The teacher is not comfortable without an aide all day initially until everyone has agreed that we can phase the aide out. At $25.00 per hour all day, the scholarship gets eaten up quickly and then we dip into our own pockets to fund the rest as well as pay for a $80.00 per hour consultant.$500.00 program set up fee, and provide or own services such as speech therapy, Occupational therapy and lest I forget, tuition.See ugly truth no. 2.  The law prior to this great scholarship would have would have forced the public school district that we pay taxes to send our children to, to provide services aide, consultant, etc. to my child in the school of my choice. School choice? Fat chance.