Autism Mothers

We will win.

Is It Autism?

I'm a big fan of Generation Rescue and recently discovered the "Is It Autism" quiz on their website. It only takes a few minutes to complete and it is a valuable tool for anyone who suspects their child might be on the spectrum. It does not replace a thorough evaluation from a professional but the questions are well designed and the results give the parent a good snapshot of where their child might be on the spectrum.

I actually took the quiz 3 times. For Sarah the results indicated a likelihood for a mild case of PDD-NOS. I agree with the results. We have our first DAN! appointment in a couple of weeks and I will have her evaluated at that time.

I took the quiz twice for Jake. The first time, I answered the questions based on his symptoms at the onset of his autism. Of course, the results indicated a likely autism diagnosis and the charts depicting the severity of symptoms showed that he probably fell within the moderate to severe range.

The second time through the quiz for Jake, I answered the questions based on his symptoms today. Those results indicated a likely PDD-NOS diagnosis. Based on the charts he fell solidly within that diagnosis, but the severity of symptoms varied between categories (i.e. social, language).

PDD-NOS is still autism. But, in Jake's case it indicates an improvement in many areas. Could this mean that we are moving off the spectrum? If nothing else, we are certainly heading in the right direction.

I'd recommend taking the quiz whether you have a diagnosis or not. If your child is already on the spectrum, you might find this is a useful tool for estimating progress.

http://www.generationrescue.org/survey/?s=2

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Evolution of a Question

Jake asked me for a cup of water yesterday. It was such a simple request, but in that moment I was floored by the amount of progress he has made in such a short time.

Before his regression just over 2 years ago, he was able to ask for water just like any other kid. Then, autism arrived and he lost the ability to verbalize this ordinary question. Here is the evolution of Jake asking for water beginning 2 years ago and ending with yesterday's request:

AAAHHH!

Water!

Water please!

You want water?

I want water.

I want water please.

I want water in the cup on the table so I can drink it.

I may have overshot it a little in working with him on location terminology. At the moment, he is quite fond of prepositional phrases. But I think that is a natural experimentation with language and he will continue to amaze me with his progress. He's doing great!

Speaking of experimenting with language...

Jake picked up the "F" word at the park. (That's my story and I'm sticking to it!) I tried a number of different techniques to rid him of this new vocabulary word including ignoring it and later consistently giving timeouts every time he said it. Boy, it's hard to punish him for saying something given how hard I've worked to get him to talk, but I had to stop him from dropping the "F" bomb all the time. Want to know what finally worked? I convinced him that it was much more fun to say 'marshmallow'.

A New Jakism

Tonight, Jake tripped and fell while walking down the hall (a common occurrence). I asked if he was okay and he replied, "I want to not get hurt, but not getting hurt is really, really hard!"

For my fellow word counters, yes, that is a 14 word sentence.

I also had another proud mommy moment today...

Good news: Sarah went pee-pee on the potty by herself for the first time!
Bad news: She forgot to put the lid up before sitting down.

School Daze

Once again, I am overcome with gratitude for the wonderful readers that visit my blog. I've been reading all of your comments and emails regarding my IEP problems and am learning a lot from your input. I can't thank you enough for taking the time to share your personal stories, experience and knowledge with me. I have no doubt that you are all very busy and it means the world to me that you would take the time to share your hard-earned knowledge. Thank you!

On Wednesday, I had a telephone conversation with the principal of Jake's school. He was very nice to me and seemed reasonable. However, he was unwilling to agree to anything that would enable Jake to begin the next school year in a typical class. He said that he would rather err on the side of 'too much' (meaning the separate class) and work up to the typical class. He believes that the IEP as it stands is a good plan, but admitted that he was not personally familiar with Jake. He did agree to speak to Jake's teacher and 'look into it.' I know nothing will change unless I force another IEP meeting with all the 'decision makers' present.

So far, I have offered the following compromises:

1. I offered to volunteer in the class either to help Jake directly or free up another aide to work with him.

2. I asked for a trial period (2 or 3 months) in the typical class with assistance. This way, they would not be committing to a full year of extra help in advance. We can evaluate the situation and make necessary changes if it isn't working.

3. I suggested that Jake attend kindergarten for a half-day, which would free up the aide to work elsewhere in the afternoons.

All of these suggestions have been rejected.

Jake's pre-k teacher, who has taught him for 2 years, believes he should be placed in a typical kindergarten class. She has volunteered to write a letter on his behalf and is working on setting up another IEP meeting for us. It still amazes me that they would reject the observations and knowledge of the 2 people who know him best (and also have the most comprehensive knowledge of autism). I know I shouldn't be surprised by anything the school system does, but this entire situation defies logic.

Nothing is resolved at this point, but I am still working on it.

Thanks again for all of your support. I'll keep you posted.

Your Opinions Please...

I'm still dealing with the evil overlords of the public school system while trying to secure an appropriate education for my son. I had a telephone conversation with the "Director of Just Say No To Everything" today and I'm completely frustrated with the entire situation. In my previous post, I detailed the results of our useless IEP meeting. Now, I'd like to fill you in on the rest of the story.

I sent in a letter outlining why Jake needs to be in a typical kindergarten class and had all of these items included in his IEP. To start, Jake is well above the kindergarten readiness standards academically. He can read very well, count to 100, knows all colors and shapes, etc. He is eager to learn more and needs to be with his typical peers to improve his social and language skills. He can now speak in sentences and has a desire to interact with other children (he just doesn't know how). I believe that if he is placed in the Life Skills class he will not receive an education and it will most likely result in behavioral regression. As I reiterated this point with the director today, she kindly informed me that they no longer refer to it as "Life Skills" but instead call it "someridiculousoverlyPCphrase". Since I cannot remember the new name of the class they want to sacrifice my child to, I'll just call it "Life Skills".

I have also explained in writing and verbally why Jake needs an aide in order to navigate kindergarten. He will need help with all self care needs including diaper changes/toileting, hand washing and meals. He also needs continual prompting to remain on task and to participate in classroom activities. He needs someone with him in the hallways, at assemblies, in the library and cafeteria, during PE and on field trips. He has the tendency to run off unexpectedly and has a limited understanding of danger. An aide would help ensure his safety while at school. Obviously, all of this would be too much for a teacher to manage and still be able to work with the other 25 students in the class.

So, now you know why I want him to attend a typical kindergarten and why he would need an aide to do it. I was told today that I would have to meet with the principal of the school and ask him to supply assistance to Jake. Of course, I was told at the IEP meeting that the only person who could approve an aide for Jake was the Director of the EC program. Now I'm caught in the middle of the 'not my job' game. I will meet with the principal, but I do not have high hopes for that given the fact that he has had to lay off tons of aides already and many of our teachers are being forced to work one month without pay during the next year (big budget crisis here).

The director believes we should continue with the IEP as it is written. This means that Jake will be placed in the Life Skills program and after the 3rd week of school he will be allowed to visit the kindergarten class for 30 minutes to 'see how he tolerates it'. If it doesn't go well, he gets sent back to Life Skills. If it goes well, they will slowly increase his time there. At this point, there is no assistance for him while he visits the class. I might be able to get the principal to agree to supplying some help for at least 30 minutes, but I doubt he'll be able to provide much more as the time in the class increases.

The director said we would use these trial visits to 'collect data' to determine if Jake really needs an aide. She said an aide would be the 'most restrictive' service and would only result in Jake's dependence on assistance. Pardon me, but that is the biggest load of BS I've heard in a while. If it is handled properly, dependence should not be an issue. And, I think the 'most restrictive' environment is isolating him from his peers in a room of non-verbal, severely disabled children. Feel free to correct me if you disagree.

At the end of our conversation, I asked once more for her written refusal for an aide. She will not do that because she says that she is not refusing the service, she just wants to collect data before making a decision. Jake has attended that school for 2 years already, there is plenty of 'data' for her to review. His current teacher and therapists are all in agreement that he should be placed in a typical kindergarten with assistance. The director is just trying to buy herself some more time.

If I proceed with the IEP, I am afraid the next year will be a waste. I've already mentioned the trouble the Life Skills class is likely to cause. And, I'm very worried that once he goes in there, I won't be able to get him out. Even if I can get the school to agree that he needs an aide, how long will it take for them to provide him with one? Also, it's possible that the transitioning between the classes will be too difficult for Jake. I'd like for him to start the year off in the class he belongs in.

Here are the options that I am considering. Please feel free to offer your opinions on these or let me know of any other ideas you have:

1. Accept the director's decision to proceed with the IEP as planned. Allow her to collect data during the school year to determine need for an aide. If I do this, I will have to call an emergency IEP meeting shortly after the start of the year to force them into making a decision. Otherwise, they will try to put me off indefinitely.

2. Call the director and explain that she has 2 year's worth of data to go on and if she is not willing to provide assistance based on that, then I need her written refusal immediately so that I can take the fight to the next level.

3. Trust that the school system knows what they are doing and just go with the flow. (Sorry, had to put a joke in here somewhere.)

I'm looking for input from my fellow battle weary mothers. Any thoughts on how I should proceed? I'm looking forward to your suggestions!

The Dreaded IEP Meeting

Our IEP meeting for Jake's transition to kindergarten took place this morning. I've been preparing for this meeting for quite some time, outlining his strengths, areas of concern, requests for goals and attempting to identify all the areas where he will require additional assistance. I had worked up a good deal of anxiety about the meeting and attempted to counter the stress by being as prepared as I possibly could be. Here's how it went...

I arrived early and dimmed the lights in the room. I lit a lavender scented candle and placed it in the center of the table. As each team member arrived, I greeted them with "Namaste." Once we were all comfortably seated, we took a cleansing breath. We proceeded with the meeting only after all team members were fully focused on providing Jake with the best education the public school system can provide.

Ok...seriously. It was nothing like that. But, I had fun envisioning that scenario before the meeting. Here's what really went down...

I arrived early and took a quick puff from my inhaler to ward off a stress induced asthma attack. Then I visited Jake's classroom as I always do before meetings. Only this time, when I went to leave, he launched into a massive meltdown and I had to leave him there to scream it out with one of the assistants. I then discovered we were meeting in a different location from all of our previous meetings. This new room was smaller than my closet and barely held the NINE team members in attendance. I made it there in time with all of my typed notes still intact.

I presented a written request for a one to one aide for Jacob. As expected, no one in attendance could approve this request (I've given the school system 2 weeks to respond). We then went on to attempt to build an IEP that would allow Jake to have an education. In short, I was pushing for placement in a typical kindergarten class with assistance. Knowing that the one to one aide could not be approved during this process, I had hoped that we could outline specific times when additional aides (the school has some that float between classes) could assist Jake throughout his day. The school wants to toss him in the "Life Skills" program where he would be the most high functioning student in the class. I don't believe he will gain social skills or an appropriate education in this setting. Unfortunately, the school was unwilling to provide any sort of assistance to make the transition to typical kindergarten possible at the beginning of the year.

With the current arrangement, Jake will be placed in the Life Skills class next year. We did agree to allow him time (30 minutes to start) each day in the kindergarten class after the 3rd week of school. So, the best case scenario from the IEP as it stands now is that he will slowly be worked in to the kindergarten class. This same process was supposed to happen this year at the pre-k level. He was initially placed in a typical pre-k class where he was ignored all day, left to himself in a corner and rarely had his diapers changed. When I learned about the problem, I pulled him from that class and returned him to the special pre-k room and added to his IEP a minimum of one hour a day in the typical class with an assistant. Want to know how many times they followed through with that IEP item? Zero! Not one single time. So, you can understand why I don't have a lot of confidence in this plan.

Now I wait for a response to my letter requesting placement in the kindergarten class with a one to one aide. It's a long shot, but I have to try. If it is not approved, I am prepared to jump through whatever hoops I have to in order to get this service for him. Academically, he is at and in some cases above grade level. He just needs some extra support to make it work. If we handle things right during kindergarten, it's entirely possible that he will be able to manage nearly independently for the next year. Try explaining that to the bureaucrats.

I am disappointed with today's meeting. I want his teachers to be as excited about his intelligence as I am. I want them to see him as a smart, kind-hearted boy who just happens to have autism. One day he will show us all what he is capable of. Jake just needs to be given a chance and, of course, an education.

I'm not finishing fighting for Jake. I've only just begun.

Some of our families have been told to put their child in an institution. We're hoping for Harvard.
- From the TACA website

Happy Mother's Day!

Here is a lovely piece by Erma Bombeck. It has repeatedly circled the world via email and has been reprinted countless times in publications and various websites. Yet, each time I see it, I stop to read it again. I think you'll understand why...

Mothers of Disabled Children
Erma Bombeck, 1980

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

'Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecelia. Rudledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity.'

Finally he passes a name to an angel and smiles, 'Give her a handicapped child.'

The angel is curious, 'Why this one, God? She's so happy.'

'Exactly,' says God. 'Could I give a handicapped child a mother who does not know laughter? That would be cruel.'

'But has she patience?' asks the angel.

'I don't want her to have too much patience, or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it.

She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy.'

'But, Lord, I don't think that she even believes in you.'

God smiles, 'No matter. I can fix that. This one is perfect. She has just enough selfishness.'

The angel gasps, 'Selfishness? Is that a virtue?'

God nods, 'If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says Momma for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.'

'I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side.'

'And what about her patron saint?' asks the angel, pen poised in midair.

God smiles, 'A mirror will suffice.'

Gifts for Mother's Day

There's still time to order a Mother's Day t-shirt or gift from Spectrum Hope. Order by May 5th and CafePress will give you a free upgrade for 2 day shipping!

Click here to shop my store on CafePress.

Sweet Potato Pancakes

1 cup Garbanzo and Fava Bean flour
3/4 Quinoa flour
1/4 cup Arrowroot starch
4 teaspoons baking powder
1/2 teaspoon salt
1 teaspoon cinnamon
1/2 teaspoon nutmeg
1/4 cup maple syrup
1/4 cup canola oil
2 eggs
2 - 3.5 ounce containers sweet potato puree (I used Gerber)
1 cup milk subsitute (I used almond)

Combine all ingredients in a bowl and mix until well combined.

Cook on pre-heated non-stick skillet. Pancakes will be ready to turn over when bubbles form and burst on top.

Makes about 30 small pancakes. Freeze and reheat for a quick fix breakfast.