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.