Autism One Conference - My 1st time experience

Last week was the Autism One Conference  and it was my first experience going to a conference devoted to Autism period. I think a few weeks ago I mentioned my trepidation about going to this because 1) I am not a huge fan of crowds and 2) well I may in general be new to this I don't necessarily feel that my opinions are valid by many who have been doing this for years so it makes me uneasy.  While I felt that way still after the conference I felt even more overwhelmed by all the information I had been given.

A few weeks ago I printed out the conference schedule with the seminars and it was 15 pages long for 5 days. There were many seminars that were happening at the same time of other seminars I wanted to see so it was hard to put a priority on certain things.

The first day I went was Wednesday and I had 3 seminars I wanted to attend and only 2 happened because of a family emergency for the last presenter.

So I went to a seminar called Communication Solutions for children with Autism. This was very informative since it revolved around communication devices for nonverbal kids. Excellent presentation with great information on how to go about getting one of these for your kid.

The second presentation was called It's a Geek to me: iFun with Function. This was basically a seminar on how to use your Itouch, Iphone or Ipad to make a variety of items that normally can cost you a lot of money through extra apps. The speaker showed us how to make schedule boards, task boards, social stories and video modeling just to name a few things. You can find her directions on her website: Proudd1 - my favorite i products. It's in a pdf. form called idevices on a budget. It was very informative. I was sitting in the seminar texting my husband to make sure we could still use our old phones to do this for our little one.

I then went to lunch and had a couple of these:

I had another seminar scheduled but that got canceled unfortunately. It was about planning for the future of your special needs kid. Bummer that it got canceled.


On Thursday I returned and was set on attending only 1 seminar. It was an all day event called Special Education Law Day. ALL.DAY.LONG. This was the most informative of any seminar I went to. If you have a special needs kid in general and they need an IEP this is a seminar you should attend. I wished I had this seminar 10 days earlier before Avery's IEP meeting.  I also wished I had Avery's IEP with me to ask questions specifically for it. There was just a lot of information to absorb after 8 + hours.

I only had one of these at lunch:

Because I knew if I had more than 1 I wouldn't be able to sit through the afternoon having to get up and pee all the time. Darn tasty ice cold beer. What made Thursday hard was that it was Avery's 3rd birthday and I didn't get to see her that much before I left and almost didnt' get to see her before she went to bed.

I was able to get this out of her before she went down for the night:

That was the best part of my day!

When I returned on Friday it was the last day that I could be there and I finally purchased something for Avery and that's called a Hug Chair it should arrive in a few weeks. I am hoping she love's it. I was able to spend some time going around to a lot of the booths since almost all of the vendors finally showed up. I found Avery's OT's companies booth and sang her praises to the members staffing it. She truly loves going there and I dread the day we might have to change things.

I only attended 3 seminars that day and they were spaced out a bit. My first one I attended was called Functional Communication. It was a 2 hour presentation that had a small hiccup. It was booked into a small board room that had tables set up in it. They had to remove the tables, find chairs and the room was packed to more than capacity. It said 24 on the wall and I counted about 50 people in the room, sitting on the floor when there was no chairs left. There had to have been about 20-30 other people turned away at the door that's how important people thought this was going to be. It turned out it was very important. The speaker herself had Aspbergers and has 2 children on the spectrum. She basically showed us a better way to incorporate using a PECS type system with our children. She broke it down very easily and very logically from a view point of how our children are seeing it from us. After hearing this presentation it just made me realize what was missing from Avery's therapy this whole past year. Sigh.

I was able to squeeze out of that meeting in time to get to the restaurant to have lunch before it got packed. So I met my dear ale friend there again:

The second one I went to with my friend was called GFCFSF Diet on a Budget and it was very simple. It did have good information about writing off some of the costs of this diet on your taxes. You can find out more information on the diet help here on TACA Now's website. Which that is another thing. The Talk About Curing Autism  was awesome. They gave me a huge book about resources and basically it's a getting started with Autism battle book imo. If you have not contacted them and have just started on your "journey" please do.

The last meeting I attended was called Daily Toxic Exposure and It's Impact on Health and Behavioral Development. I pretty much felt that I wanted to live on a farm in a bubble. shudder. I ordered the book Detox Diet's for Dummies while I was sitting in the seminar. This book outlines more about what is wrong with our food chain and our environment. I really can't wait to get it.

To sum up my experience I left the seminar after 3 days feeling that I wasn't doing enough for Avery, feeling overwhelmed with all the information and feeling more sad for some of the other parents. There were parents and grandparents in these seminars trying desperately to help their children/grandchildren that you just wanted to hug them.

Another thing I noticed and I don't blame anyone for this but everyone I talked to kept referring to my child as "he" and I had to keep correcting them and saying no I have a daughter. I guess we are the minority here. 

The worst part of it was on Thursday after the IEP strategy meeting aka Special Education Law Day. There was a Mom there that was Asian whose English wasn't very great and she came to the seminar looking for help for her son. We (my friend and I) tried to give her information for advocacy groups in our area because she was from our state and the lawyer and parent advocate who were presenting were from California. I just couldn't imagine how difficult it was for her trying to put her words together so that someone would listen to her and help her. The TACA booth wasn't set up til Friday but if it was set up on Thursday I would have marched her right over there and set her up with them. I didn't even know about TACA until I read about it in the booklet from the lawyer on Thursday but had no idea they would be at the conference until I walked past their booth on Friday. I hope she finds the help she needs for her son. I feel horrible for not thinking of giving her my email at least to help her but I can't go back in time now to do that. I'll just keep her and her son in my prayers that they get the help they need.

Before and After

I wasn't thinking that this morning when I was putting together the picture collage. My oldest daughter was student of the week at school and the teacher asked for us to have a poster board about our child for the week. Well I got the note at the beginning of the week. Now this week we've had 4 therapy sessions, 2 classes for Avery, and Monday was her big ol IEP meeting. So I was a goof and didn't get the "poster board" done til this morning and I made a photo collage. Easy Peasy.  Only after looking at the collage later with my husband and the pictures were side by side did it come to mind.

It's two pictures of my daughters taken about 18 months apart. The first is when my youngest is 9 months old. She was lively, smiley, happy little baby. The second was last week nearing the age of 3 years old. She looks lost, in her own world, sad to me.

I don't know the why's of why Avery is the way she is but something "got lost" here during this time.  I always figured if I spent anytime trying to figure out why this happened to her I would drive myself crazy. I know I would. I have a few theories of why our generations children have changed so much in the last 20 years but I like to keep them to myself.

While I love the first picture of my girls, the second picture I only like. I think it's because she looks lost and it hurts me. Now any normal toddler taking a picture can get a "deer in the headlights" look on them when caught at the right time. With Avery though seeing the pictures next to each is just a reminder that she wasn't always like this.

It leads to questions like the one that stands out, "will she always be like this?" I don't mind thinking about it sometimes but I don't like to dwell on it. I can't predict the future because if I could I would be a lotto winner and I would know when the Cubs eventually win a World Series until then I can hope that she won't always be like this, we will win the lotto and the Cubs will eventually get their proverbial shit together and win a World Series before I kick the bucket.

The day after...

After yesterday's evaluation and IEP meeting that you can read about here: Rock Star Avery I can say I was disappointed but since I knew it would be a long shot that they would agree to out of district placement I wasn't surprised.

I did get emotional in the meeting which I normally have been able to control my feelings about this world we live in now. What I had a hard time was with the administrator who rides a broom in her spare time and how she talked to us. The demeanor I got from it was that she knew of all of the options out there and this was the best one for her. She even had the gall to tell us that all the private schools take long breaks as well.

Huh. The school I was at on Friday takes maybe about 3 breaks a year and is a basic year round school for a full day. When I spoke up and said I had visited a school  the look on her face was basically "oh shit." I understand the districts want control of things and they do know what schools might be a better option for your child but what I really dislike is when school districts tell you that you do not have the right to look at another school without their permission. Um no not true. The only time another school will not allow it is if that is their general rule. That they have to wait for the paperwork from that district before you are allowed to tour. When I called the school I visited on Friday the first thing I asked was if I had to have permission from the district to visit and they said NO. And considering Avery was not even enrolled yet there should have been no issues for me to visit said school. So administrator on her broom stick can sit on it.

I basically feel she will be the hurdle in this whole process of getting the right school for Avery. Considering they said they have never had a child who needs as much sensory input as Avery does was kinda of a shock. Really our kid is the worst? But they said she wasn't. So what did that mean? That the really extreme cases were automatically placed in out of district schools?

Another thing about this whole process is that it reminds me of how Early Intervention in our state works. Your child gets evaluated by one team of therapists but then they are not the one's who do the actual therapy. The state has to find therapists OR you do depending on how crappy your coordinator is. So it's another team. With Avery we got therapists right away but it became obvious right away that Avery needed a second day of OT and it took awhile to get that scheduled because the coordinator kept telling me we had to wait for her 6 month review. Oh no no no. See in the little yellow handbook for parents I highlighted the part where it said if they parents wants a review sooner than it should be done. Once I pushed it with the coordinator we got the review sooner and Avery got her second day of therapy.

How is this similar to the school district? Well the team that does the evaluations are not necessarily the same people doing the actual in class therapy. I know that from dealing with my oldest. I know the OT and the SP already.  So while the eval team might come in and see her occasionally a different person will be working with her daily. So with both examples you'll have two differing opinions about how much she is achieving. What I don't want to happen is that they make things on the books look great but in reality things aren't. KWIM? I don't want them to say she is meeting their goals because they are so low but in reality she should have more intense therapy.

So yesterday was a lot to digest. I'm still digesting it today as I got a lucky appointment to get Avery's physical done today because it was the only opening til June. And broom stick lady said it had to get done ASAP so she could get the bus situation done ASAP. blah blah blah. grr.

So my husband yesterday decided to just have ice cream for dinner. His comfort food. I decided on the other hand to hit up a local restaurant and get take out. My husband thought I was going to get Taco Bell but when I got in the car I headed to Merichka's to order a garlic poor boy and a double baked potato. While I waited I had a nice cold beer. Wishing I could sit around for some more to. When I got home with my bag and told my husband about the beer he was disappointed because he said he could have used a drink to. What was funny about this is that it only took me 20 minutes to go there, order food, drink a beer, get food, pay for food and come home. Better than Taco Bell where they never get the order right and take forever and there's no beer either.

How is Rock Star Avery today? Complete meltdown while trying to transition from activities with her OT today. Nothing that the therapists would have seen yesterday. Sigh. Throw me a bone kid. Throw me a bone!

Just a quick update on today's eval and IEP

We had Avery's eval at the school district and of course she was a rock star for them. They did everything to their advantage because they actually read the reports from the therapists and kept the lights dim. It was much different than what we had gone through with our oldest. She had a few meltdowns but not as big as we have seen at home (like right before we left ).  So they basically saw a very calmed down version of herself. Awesome.

When we went back for the IEP meeting in the afternoon we were joined by the special education administrator for the district. Which from the first time I met her 2  years ago she seemed that she rides a broom in her spare time.

For now they will put her in the district program, 6 weeks in the summer starting in June at the summer school in the next town over. Then she'll be off for 4 weeks then start the regular year in August. The true test they believe on how she adjusts will come September when she goes to what will be her normal school in our town. They already know we are not happy with the sensory "closet" which they told us we should have never have seen it (which then the SP said they (we) requested to see it) and that they don't consider it a sensory room but just some place where they store stuff. We basically let it be known that Avery will not be a guinea pig for them since they have not ever had a kid with this much sensory issues. They agreed that we will keep close tabs on her progress and will meet within a few weeks of the fall semester starting to see where she is at and if she should be moved out of district. Which the coordinator was more than open to putting that out there. However the special education administrator  basically threw a fit that we would even think of going out of district and was not happy when I said I didn't want it to get to the point of a due process meeting. Yeah they don't like it when you use big words and have researched your options.

So that's it. I have a headache now.

Less than 72 hours

We will have the first IEP meeting for my youngest with Autism. She'll be starting Early Childhood preschool after she turns 3 at the end of May. We expect the school district to "let her fail" Or I should say "let themselves fail" until we get to the point of a due process and force her out of the district into a special private school. What we would like to happen is to come into the IEP meeting Monday afternoon and by the grace of God they tell us from the very start, "we can't handle her needs and we'll place her in out of district school." We can dream right? My best friend said if they allow it right off the bat we better go play the lotto because it's extremely rare for them to go from the get go say "we can't handle her needs."

In case we get a miracle on Monday that they'll go for out of district the little one and I went on a tour of a private Autism school about 40 minutes from our house. That's a general minimum time it would take her to get there on a bus. The only two ways to get there are both under construction. Awesome.

My first impression upon walking into the school is a stark new reality. Twenty years ago these kids would have been in an institution and they would have been considered mentally challenged. Today we don't have enough schools for our children. This school is already on it's 3rd building and they have already out grown this building they are in. Oy.

They have one on one aides, multiple therapists, dim lights, a sensory room, a huge trampoline and huge gymnasium. The school is for all ages but starts with Early Childhood preschool which many schools do not. Another thing about the school is that it is an all day program 8:30-2:45 and year round.  Wow. It would be intense therapy with academic learning. All in all it would be a blessing. We hope like most parents ( I think ) that she could mainstream one day and that is part of the goals they will work with her on.

Knowing what is out there compared to what she is going to get just leaves me with a sick feeling. The sensory room at her future school is the size of a janitor's closet. The sensory items won't even be moved to the summer school building. Obviously these things by law have to be met. Will they be met in 3 weeks time? Don't know.

My husband tells me not to worry about things until they happen but um HELLO who is the one researching the schools? No not him because he works two jobs. It's me. I get it. I'm the stay at home Mom and that's part of being a glorified secretary.  I worry because I want the best that is out there for her.  I worry because I want to plan.   I want to know her schedule will be so I can plan for her sister as well. I don't want her getting the shaft this summer with not doing anything fun. I don't like living with uncertainty. It raises my anxiety and that makes me an unhappy momma.

***

This week though I got to be room Mom at her little school for the last time. They celebrated her birthday the day I was there though I am a lame ass and didn't get the birthday goodie bags done til tonight. So I'll send my friend with a bunch on Monday while we are at her evaluation and IEP and I'll drop the rest off on her last day of school. 

I kinda of went all out on these goodie bags. They are kinda of a mix of Thank You for being my friend understanding why I don't have my words and Happy Birthday. So the boys stuff was pretty easy, thank you dollar spot Target. The girls stuff was even more easy since my husband works for a national company that caters to lo and behold little girls/preteens. So they get some pretty nice stash. 

But I included this note with the bags:

I have Autism. Autism is a developmental disability that affects social and communication skills. Children with Autism tend to behave in an odd and unpredictable way as a result of their disability. Thank you for being understanding and being my friend.

Avery and her family

Am I apologizing to them for her Autism? I feel like I am a little bit, but also feel like I'm trying to say, "sorry my kid was a PITA and threw tantrums any time your kid came near mine and made your kid cry all year." All the parents have to volunteer each semester so the parents all have had some type of contact with my little girl. Also one of my friends has a daughter in the room with her on one of the same days. So when she's been room Mom it's been a good thing. So her little one is getting a really good bag ;)

So on Thursday I got to see her follow the schedule. Which at the beginning of the year would have been hell. What triggers her days where she has meltdowns? Don't know.  The day I saw her she was in a good mood and they have learned to just let her be to avoid melt downs. 

A few months ago she would have flipped if there was another kid near the tunnel much less 3 of them smooshing themselves into the tunnel with her. This day she was ok. She just waited them out til she could have the tunnel to herself. 

At snack time they sang Happy Birthday to her and gave her her certificate and I was able to catch a great smile from her.

I don't know if you can tell but she doesn't sit at a table with other kids. :( She sits in her Fisher Price space saver chair in the corner with her pretzels and sippy cup. She has her lovie with her at every class. The fact that she doesn't sit with other kids has always depressed me but I know for her she's ok with that. She likes her space and doesn't have to deal with the mindless chatter *snort* of the other little kids. 

I have to give kudos to her two teachers because they didn't sign up for a kid with Autism this year. It's been a work in progress and they have been more than willing to work with her. Now she's more of a handful because when she has meltdowns now her weight hinders them from helping her fully. I kept her in the class when there was plenty of times we could have pulled her from the class but in my heart I knew this might be one of the last normal classes she participates in an awhile.  Hopefully one day she'll mainstream back. Can only pray she does.

My first Mother's Day with a daughter with Autism

Now she was around last year. So I've always been her mother. But then there's been many changes in the last year at our house.

This is one of the last pictures I have of her where I was able to catch her attention and get a happy look from her.

Easter 2010

We started many days of therapy for our little one in March of 2010. Monday through Friday there have been therapists coming and going. A whole summer of therapist appointments. Not a single trip to the zoo or beach or pool.  Basically housebound with 2 toddlers.

In the fall she started  at a little school through a little church that was basically a Parent's Day Out program. We had sent our oldest there for 2 days a week and at the beginning of the year we made arrangements for our youngest to start in the fall as well. I gave her teacher a heads up and described her issues in detail as to not to spring things on her and the other teacher. Already a week into the program we were becoming more aware of her social issues and her ways to deal with frustration and stress.

First day of school and she's ready to rock.

The day after she started her class we got her official diagnosis. I say official because we already knew. We were hoping it was just the sensory integration disorder and not the whole shebang of Autism. We knew it was a possibility but one we hoped we wouldn't have to fully except.

Not much has changed from those early days. She's not saying spontaneous words for us. She's gotten to the point where she will push you into the direction of what she wants and gestures to what she wants but will not say what she wants no matter how hard we try to get her to use her words. We know she has the words. We know she does. I've heard her say two complete sentences. Two complete sentences. One she asked her speech therapist, "what are you doing?" and the second one she repeated what I asked her when she got her legs stuck in the slats of her crib. She asked "what happened here?"
That's all I've heard her say. She'll say words for her speech therapists during a session or with her OT during a session but it's always on her terms. I've  gotten to the point where I play dumb in hopes she'll finally use her words. I've gotten "maaa" but that's either milk or momma. She loves milk as much as she loves me so it's either me or milk with her.

In the last year I've dealt with a little girl who takes her frustrations out on herself or me. Once in awhile her sister gets the repercussions of a little sister who fights back for a toy but mainly it's me getting the brunt of her frustration. I've been head butted, hair pulled, pushed around, things thrown at me, flailing body and pulling the all famous "going no bones" on me at the most appropriate times.

Today's Mothers Day was no different from any other day of the week. She didn't know that she should treat mommy nicely. I got head butted a few times today, pushed around a few times and basically an unhappy little girl today. There were two moments today that were good. One was when we were trying to get ready to take a picture of me and my girls.

Avery smiling * only I believe because the flash of the camera was making her laugh.

My little girls and me.

The above is the best that we could do with two squirming little girls. One who doesn't look at you when you ask her and the other has Autism and could care less we are taking pictures. Here's another outtake of the photo shoot:

The one in yellow does not have Autism she's just turning 5 in August.

In a few weeks the intrusion of strangers will stop when the youngest turns 3 and moves on from the Early Intervention program in our state. I seriously can not wait for this day. Our oldest daughter was in the program for her own issues so we had a year of therapists coming and going. It only ended about 7 months before our little one started her therapy.  So basically it's been almost 2 full freaking years of strangers coming to my house. Two full years of me waking up and asking what day is it, and who is coming today? I mean it's not like my kids are finally going to sleep in til like 7 or something but I'm just glad I don't have to get out of my pj's right away.

A year ago I was just a mom of two toddlers one with issues who was such great progress at school that they call her a class mentor she rocked so much. The other didn't talk and had just gotten the ear tubes in, in hopes that would solve her issues. It did not. We then started full on into our second journey into the world of therapy.

A year ago I wasn't an angry Mom. Yes I am angry she has Autism. That does NOT mean I love her any less. I am angry that the little girl who would give me kisses when asked can't/won't do that anymore. I am angry that she hit's herself in the head when she get's frustrated. I am angry that she doesn't get to be normal and that her sister doesn't get to be a normal big sister. I make no apologies for those feelings.

But I am still grateful for every minute of the day that she is here. I know what it's like to lose a baby. I know how lucky we are that she is physically healthy and doesn't have to go through chemo or dialysis or anything like that. I know how lucky we are that she doesn't have to take meds 10x a day to keep her alive. She's just a little girl who can't talk and has sensory issues that impede her ability to use her words she has locked in her head.

Maybe one day when she's an adult she can tell me she's sorry for all of the head butt's and hair pulling she does to me but today I know she doesn't mean it. So maybe that's what get's me through my days. I know she doesn't mean what she does but it doesn't hurt any less.

Friday Update..

We've been having a kind of rough week here at our house. We switched the girls bedrooms over the weekend and that has stressed Avery out enough that she doesn't want to be in her crib and we've had to do cry it out for bedtimes this week. I don't even try for naps right now. She's completely ripped the zipper off the tent but the sides still work so it's staying up for now. She's putting her leg up wanting to climb out but she has yet to do it.

On Monday she lasted about a half hour at her little school before I had to pick her up. Sigh. I didn't think she would have that bad of a day but it was bad I guess. Then today she was suppose to have class but since I've dealt with lot's of meltdowns in the past few days and she woke up crabby as all hell I decided not to bring her to class. She seems to be suffering from some separation anxiety from me right now. Like if I leave the house she's ok, but the minute I come back she is squawking to let me know she's upset with me. Then she cries until I come into the room and she can cuddle up and lay next to me.  Adorable as all hell.

Though we've had lot's of frustrating melt downs with lot's of head hitting and throwing of the body on the floor I've also had this this week:

When someone curls up next to you on the couch that sucks everyone into a deep slumber you really can't resist taking a snap shot of it. I mainly title this, "Who still doesn't need naps?"

I just want her to be my friend...

That's the oldest this morning.
Talking about her little sister the one with Autism. She even goes to say but "I was spinning her!"
Yesterday I caught them in a moment. One of the few moments where the youngest will submit or want to be near her sister.

They were watching Tangled for the upteenth time while I was getting lunch together. I walked in on this little love fest. We rarely get smiles out of the little one. At least for pictures because we all know how kids on the spectrum just love to be told what to do sometimes. This was the closest I could get to a smile yesterday:

So of course the older one who has a habit of looking in the opposite direction when asked to look at Mommy worked her magic. Though I really think this is normal for toddlers in general. I think you either need a bubble machine or kitties and puppies and rainbows before they can both look and smile at the camera at the same time.

We haven't had professional pictures in a long time and although I know my friend who does our photos would do great, I just envision melt down city. I mean it could very well look this picture:

And that's of the oldest daughter who doesn't have Autism. Meltdown forever saved in time. LOL.

The Big Switch- An Autism Kid Friendly Room

We switched our daughters rooms this weekend. It only really made sense since Avery has all of her therapy items in her sisters room that it would become her room and her big sister would get herself a big girl room.  It's been a slow process doing things a few items at a time. 

Today I finally got the beds moved. Chaos shall ensue.

 Cocoon swing from Ikea (they no longer sell but you can search Ebay),  trampoline we received through the state and cube chair table was also something we received through the state.

The toy storage area with changing table. 

Crib tent with sides for safety reasons. Our daughter liked to hang her legs through the slates. Then she would fall asleep with them stuck so hence the screens to prevent her from doing that. Also in her crib are different textured blankets that she uses while in the crib. From soft and satin, to chenille to velvet.

The bean box is a big therapy item we keep hidden in her closet or under the train table. If we don't, we have beans everywhere. She loves it and gets the most out of this one item. 

Before I could finish cleaning up her old room, her and her sister had managed to climb into the crib. Joy! They were very proud of themselves and didn't understand why we were not so happy with them.