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.

GREAT Description of the IEP Season!

This was just too funny, so I felt obligated to repost it from another site. Enjoy!

The IEP Season
(The author for this article is unknown).

We have the cold season, the flu season and even the holiday season, but no season strikes panic in the hearts of parents of children with special needs like the IEP season. For those who don't know, IEP season usually runs from late March through early June, but IEP's can strike at any time.
An IEP is an "Individualized Education Plan" that is made for every student, who qualifies for special Ed services, each year. These insidious stacks of paper can pit teachers against principals, parents against parents and turn grown men into towers of Jell-O. There is no cure for IEP's, and no research is being done to eradicate this dread affliction. The only thing we parents can do is try to survive.
The following are symptoms of an upcoming IEP. These symptoms will appear at the school level: Excessive testing, prying into your family's personal life, and a complete breakdown of communication with school officials. A parent will experience: a racing heart, sweaty palms, excessive worry over little things, and a generally sick feeling all over. Advanced symptoms include: extreme paranoia, irrational thoughts of violence or the desire to listen to Yanni CDs while weaving baskets.
As stated before, there is no cure for the IEP, but suggested treatments include: extravagant preparation, including photo murals of your child, charts, graphs, fresh baked goods and an interpretive dance depicting the future you envision for your child. Character references and a complete life history (typed, double spaced, in triplicate) also help. In ordinary circumstances these are usually sufficient. In the more difficult cases, these things are recommended: heavy drinking, antidepressants, and subtle hints that your sanity may be teetering on the very edge.
Yes, you too can make it through the horror of IEP season, if you follow these simple steps: Document what your child needs and why, prepare ideas on how these things can be implemented and if all else fails, rant and rave like a lunatic. Hey, it doesn't hurt if they are a little afraid of you! Hit men have also proven effective, but are in no way encouraged or approved by this author. (Psst - my husband is Sicilian!)
Before I close, let us pause to offer up a silent prayer for our comrades who have fallen during previous IEP seasons:
"Dear Lord, Help us to remember the parents who have gone before us. Those who have lost their patience, their tempers, and their minds dealing with school bureaucrats who have no idea what we are dealing with or what our children could accomplish given the right kind of encouragement and opportunities. Help us to be better advocates to our own children. Help us to negotiate well, to compromise only when necessary, and to NEVER, EVER give up on what we know is right for our children. Be with us during this IEP and future IEP's and help us to keep our composure during this trying time. Amen.
Now, let's go kick some school butt!

Trying Times

I have done the unthinkable. I am enrolling my son in a private school with no special education program and no experience in dealing with special needs children. I have chosen to do this so that he can receive a religious education, be challenged academically, and be in a supportive environment, all this so that he can reach his maximum potential. We are lucky that we have enough means to be able to do this. Just barely. To accomplish this, I have met with a group of people from his school that included the school psychologist, principal, kindergarten teacher, special needs teacher (only deals with ADD and the like), reading specialist, and my sons preschool director. After calming every ones initial fears, and making promises to provide my own services and be a support person I set out to find a, no THE perfect aide for my son as well as a consultant to implement his IEP.  So, after much finagling, I found a great potential aide and independent consultant. Oh joy! Until I tried to make arrangements through the school to pay for this aide via scholarship and was told that this was not workable. Back to the drawing board. I then contacted a service that was more expensive but was the lesser of two evils compared to the other service I contacted. After the horror stories I have heard about the latter, the expense will be worth it.

    Here's the thing... I am well aware that he can attend public school for free. I also know that he would be in a special needs classroom. I know that he would become bored. He is becoming bored now in his second year of preschool. He wants to be around typical kids and shows a big interest in playing near and with them. He soaks everything up he sees and he is improving.

  I am enrolling him in the private school because I believe in inclusion. REAL inclusion. I also believe in giving him the same opportunity his sister in first grade is receiving right now. Am I really the only one that gets that? The scholarship I will be using to pay in part for his aide (I say that because it truly only pays partly for the aide,the rest is on our dime) claims to give parents of autistic children a choice, a way out of the public school system. Hmmm. Choice yes. My choice? Not quite the way it works.

  So, dear private school, please be good to my son. Welcome him with open arms. You don't know how hard I worked to get him here and how hard he works daily. Please don't succumb to the fear of dealing with an autistic child just because its a new experience. Don't miss out on this opportunity to learn from him. I have.

Articles, Theories and Therapies Oh My!

So...once again I am reading yet another article about the newest therapy on the scene targeting non-verbal autistics. After reading on about this "wonderful" new therapy, I notice a short "by the way" type of comment included in the description of this therapy that states that a augmentative communication device was used. Now, I don't claim to be an expert on any other non-verbal or verbal autistic with the exception of my son. You have to wonder though, was it really the therapy that made the difference or the augmentative communication device? Here is my theory:  Let's assume for a minute that non-verbal autistics are taking in and processing 100 percent of  all incoming language. The brain will not allow the outgoing response/request to take place verbally. Introduce a device, any device, that has a communication program and provide training to use that program. That could be any of the augmentative communication devices ranging from $1000.00 + to a  $450.00 first generation Ipad. Is there any wonder that over 75 percent of the study group showed vast improvement? Yes, by all means do speech therapy, encourage speech every day all the time, demand it even, but give the child a tool to communicate with, train him to use it and I would be willing to be that the child has less meltdowns (he is getting his needs met).  I have read that some of these children are passive and have low self esteem. If you couldn't speak and had something you wanted to say, wouldn't you have low self esteem, wouldn't you react emotionally and physically from sheer frustration? If this is way off base, how do you explain the non-verbal autistics that have blogs, write speeches, communicate fluently and in depth with a communication device? So thanks for the new therapies, but I think we will pass. You see, we are working on our on therapy. Faith, hope, love and Proloquo2Go app for the Ipad.

WANTED!

  After reading some other moms blogs, a funny thought ran through my head. If I were to write a want ad seeking new friends, what would it look like? Here is what I came up with:

                                                     WANTED!



MMOAS (Married Mother of Autistic Son) seeking lasting friendship (a week +). Must be a female (I don't need any trouble at home, thanks!). No experience needed with Autism, but would be a plus. Must be willing to call occasionally and say "Hey, hows it going?". Ideal candidate must contend with me accepting 1 out of 100 invitations to morning coffee, moms nights out,  lunches etc., my house being a wreck on any given day of the week as well as hearing lots of talk about my kids, Autism, etc. Benefits include loyalty, sympathetic listener, free advice and opinions like you wouldn't believe.  Qualified candidate should reply to:

                   1-800-I WILL CALL YOU BACK AS SOON AS I CAN

Don't Be Jealous......

  Connor is 5 now and we will be sending him to Kindergarten this fall. He has some speech but was initially diagnosed as non-verbal Autistic. It didn't take very long for people whose children had mastered talking a few years ago to lack that certain enthusiasm when I would say "You will never believe what Connor said today..." You could see it in their eyes and really I couldn't blame them. I have to say though, as a parent of a typical child as well, yes it is a joy when your child says his first words. Pretty much up until the point they become negative. With my son, its a whole new ball game. Autism has its joys at times. Thats right, I said something positive about Autism. When Connor started using words as difficult as they were to understand, it was an unbelieveable joy to hear them! Still, even though his vocabulary has increased I have moments with him when I don't know whether to laugh, cry or wet my pants from shock at what hes said.  He is a suprise package that keeps me on my toes and sometimes the edge of my seat.  The other night at dinner he had a chicken drumstick on his plate, after eating the breading he asked for "more chicken". "No" I said "you have chicken right here." I pulled some off for him. "Oh Cool!" He said. Yep, thats my boy.

Ipad Advocacy and Local Government

  One of my many projects lately is what for all intents and purposes I will refer to as the Ipads NOW! project. Our County Board of Disabilities does a great job. People with disabilities move to our county just to get the services they offer. It was our dumb luck that we were here when Connor was diagnosed. After we purchased the Ipad for our son and had great success with it, I had to ask myself  "what happens when a family can't afford one?" What kind of impact would it really make on a non-verbal child/adults life? After a lot of poking around for info as it turns out quite a bit. So why if our local board was providing assistive devices,etc. would they not pay for an Ipad? I posed this question to my sons preschool director. I was told that an Ipad was not considered a assistive communication device. It was too risky to pay for a $450.00 Ipad because another family member may use it for another purpose. They will however, pay for apps. They will also pay for a much bulkier communication device that only serves one purpose at $1500.00 on the low end going up into a few thousand dollars. That one left me scratching my head.  So I pressed further, was the board open even a little bit to further discussion about the Ipad? Yes, but what information would hold any weight when it came to changing their decision? The answer was clinical studies, the wide acceptance of the Ipad as being a assistive communication device.

  In the mean time, I stumbled across something called the Assistive Technology Act of 1998. What the heck was that all about?! I googled it and found out that there are local entities that carry out this law by providing lending libraries, etc. with communication devices etc. I even found one in our area. I called to see if they had Ipads available. Low and behold they had them on order and there was no one on the waiting list. Could that be because NO ONE KNEW ABOUT IT?!  I felt that it was my patriotic duty to spread the good word! I downloaded the application and immediately contacted my sons therapists to see who was interested in a clinical study. I am happy to say they are all either first or at the top of the list to get one. I also passed out applications at my sons school for the parents and a few people in the speech therapists waiting room.

  My current plans are to do some research myself, put together a power point presentation and in conjunction with my sons speech therapist and her study results and meet with the board at a later date this year.

  Sometimes you can't solve the problem but you can give it a great big shove in the right direction.

Angels Among Us

   The more years that pass, the harder it seems to be to maintain friendships let alone develop new ones. Our lives get busy when children come along and careers mature. When you have a child with Autism it becomes even more difficult. One or more therapist visits are a weekly occurrence. My "coffee club" consists of chatting with Connors preschool director after I drop him off in the morning. My sons therapists and I are pretty buddy-buddy and I am convinced we will be seeing the speech therapist until she retires. She has been working at her job now for 2 years. When I talk to the therapists, they know what I mean. When I asked them to join us on the Autism Walk, they were there. One of the therapists had just had her baby a few days before! They have moved their schedules around to accommodate Connor more times than I can count and have been such a gift to us! One good thing about Connors diagnosis is that I never would have met this wonderful, talented, dedicated group of women.

  I now believe Connors preschool director, Paulette was sent by God to guide me and other parents like me through through this period in our lives. When I met Paulette, I had little to no idea which way to turn. She has helped me to help myself  carve out the best path I possibly can to help my son reach his full potential. She also pointed out that I had choices. I could chose to do ABA therapy or any of the other thousands of therapies, etc. out there. The point was that I was doing something. She has done so much more above and beyond the call of duty than I could possibly even recall. I can say that she inspires me daily to see beyond my own situation and reach out to others because you  really don't need to be an expert or have solutions or even vast amounts of time on your hands. Sometimes all you need to do is reach out to another parent and say "Yep, I hear ya."

 

Advocacy As We Know It

When Connor was first diagnosed, I read a ton of information. One of the common phrases I ran across was "As a parent, you are your child's best advocate".  Well, I knew the basic definition of advocacy, but I had no idea how it applied to me. Things were fairly simple and ran smoothly in the beginning so there were really no battles to fight, no one to "enlighten".  The same month that Connor was diagnosed, a couple of parents from my sons school encouraged parents to join them for the local Autism Speaks Walk.  I couldn't bear to participate. You see, if we walked I would have had to admit to myself that he was autistic and my dreams for Connor were not what they used to be. At the time, that was as scary as looking the devil right in the eyes. "Maybe next year." I said and made our excuses.  This past year I stumbled into being team captain for my sons school team. I organized, printed flyers, raised money and said "yea team" periodically. We walked the walk, raised more money that I would have dared hoped and had more team members than I would ever have counted on. My friends, it felt good, REALLY good. I learned something very important at that walk. When your child and family are living with autism (which is neither curable and in a lot of cases, you don't even see it in a child) it is pure pleasure to feel as if there is something you can fix. Not only can I advocate for my child, but for other children as well. This is just one of the ways I have found to date to advocate for Connor.  Will I walk again this year? You bet! Heck, I may even jog....;)

Autism, Ipads and Us

When my husbands work offered him a one time deal on an Ipad, we jumped on it. I'll admit, there is not a person in my household that is not a new technology freak. The sole purpose for this Ipad was to get one (hahaha!) application which was a communication app. for my son to use. Although he has some emerging language and his vocabulary is increasing, it is increasing at a rate that we cannot keep up with and it is not clear. He has much difficulty with a lot of consonants making it impossible for anyone not around him 24/7 to understand. Well, several apps later we have found that it not only helps him to get his words out, we started getting a really good idea of what he does and does not know academically. We also found out a few things that his therapists were unaware that he can do if it is presented to him via the correct app.  If Apple only new the good news I have spread about their product I would be on the payroll. I mean, holy cow. He IS there. The Ipad confirmed what I had always suspected. He hears and understands everything we say. Even if he is not looking at us. He has learned everything he has been taught at school in the past two years. He has a slight delay in responding to a question and you cannot ask those questions back to back.

  It occurred to me that maybe what we need to do is give these kids the right tools to communicate with. How much frustration on the parents and child's part might that cut down on? How many meltdowns might it prevent when the child can get his feelings out and needs met right away? In my sons case and others with processing delays, we need to be better at recognizing that there is a delay and know the right way to ask the child a question. When I pick my son up from school each day I usually arrive a little early, in time to see the other kids for a little before they leave. I haven't seen one of those kids on the spectrum that didn't look as if they had something to say at one point or another. I know my son does.

The Elephant in the Room

Have the people around me changed or am I just becoming more jaded over time? Back in the days before Connors diagnosis I ran a play group at my church. Our children played, moms smiled and chatted, grateful to be be out of the house and talking to other adults. Now, my oldest is in first grade and my son will be entering Kindergarten at her school this fall. She is excited that her little brother will be going to the same school. My husband is working his hind end off to send them both there. I am working my rear off as well just trying to get him enrolled and set up with an aide for next year. Mainstream school! We actually are going to be able to mainstream him! I was able to find a potential  aide who, get this, is actually excited at the prospect of working with my son, believe me when I say its not the prospect of what she is getting paid that is exciting to her. My cup runneth over with joy.......that is until I had coffee one morning last week with one of the afore mentioned mothers from play group. Her son will be in my sons class and I actually thought that would be a plus prior to the coffee incident last week. She asked me how it was going with enrolling my son in school.

"Great!" I said, "He will be able to use his Ipad to communicate in class."
 "Really, what if other parents call and complain that it is a distraction or demand that their child should use one too?"
"Well, they are welcome to call me with questions. Besides that, it will be written into his IEP so there shouldn't be any question about him being able to use it."
"Well, I know that Mr. S. (principal) doesn't like distractions in the classroom."
"Well he really won't have much of a choice. There are laws in place protecting my sons right to use his Ipad and the school is not exempt from those laws".

Lets just say the conversation wasn't very pleasant from there on out. I tried to do the right thing. I apologized for raising my voice, I explained that I was under a lot of stress right now trying to get him enrolled and that it is a particularly sensitive subject. She had caught me off guard. I can handle one day at time, more than that and I do believe I would step right off the nearest cliff. I had to practically sell my soul just to get him into Kindergarten at this school that I truly believed was the best place for him and she brings stuff up like this? In the week following I found out that If I had just sprouted horns I wouldn't have been treated any differently than I am now. She was quick to spread the news of my negativity to other moms at the school, no doubt I am now labled as the angry mom with the disabled child. On that note, I am reminded of an Irish toast from the movie "The Quiet Man".  

    "To those of you who like me, God Bless you.
    Those that do not like me, may God give them
    a little twist of the ankle so that I might know them
    by their limp".

Prologue: How I Fell Down the Rabbit Hole

   Once upon a time, about 2 years ago,  my second born was diagnosed with Autism. Oh it wasn't entirely a shock to me and most definately not to my husband Marc. I always waited for my son Connor to achieve the next milestone, at first early (he was my son, he had to be a genius!) and then I just hoped he would reach that milestone on time (okay so he was just average). He always liked to wait until the last second to do everything; crawling, walking, etc. Eventually he did it. Then it was time for him to talk. I listened patiently for words. I compared him to other children his age who were starting to speak. I was told many times over by family and friends "he's just a late talker." At this point I was convinced but with a little voice of doubt in my head that I told to shut up on a regular basis. Marc was was not so convinced. We had him tested through our school district to get him into a preschool that would help him with speech development. Even though the program was mainly for children on the Autism Spectrum we didn't have a official diagnosis from a medical professional. I held on to that for as long as I could.  Then, 3 doctors visits, testing done by a team  of specialists, and several IQ tests later we were called in to speak to the team that tested him. As they entered the room, I noticed the chairs seemed to be sitting further back from us then they had been before. Then they told us our son was Autistic. Okay, so we were somewhat prepared for this, but why did they look as if we were going to flip out and go on the attack? My husband and I knew next to nothing about Autism at the time. The next thing I know, he is receiving speech therapy and the doctor is insisting that he needs several hours of ABA therapy, a team consisting of 3 people a psychologist, consultant, and therapist. All at the bargain price of $70-$80 dollars each. Were they serious!?  What on earth was ABA therapy anyway? A cure?  Were we going to spend the rest of our lives in therapy? Why was I getting calls every other day from a consultant asking what our plans were for him? Yep, that's when I fell down the rabbit hole. I have felt like Alice ever since.