It is what it is.

I couldn't think of anything better than that to describe our day away from home.

My husband's brother and his family live near the Indiana/Ohio border. My sister in law and I had planned since last year to set up a day for us to visit and to do a Polar Express Train adventure with their four boys and our two girls. Authentic vintage steam engine train, waiters handing out hot chocolate, a conductor punching the golden ticket and of course a visit with Santa along with the souvenir silver bell. Sounds wonderful doesn't it?

For us to do this trip it was a 4.5 hour trip from our home to theirs. That actually wasn't bad kid wise. Avery didn't really start to melt down from being trapped in the car seat for so long until about a hour out from their house. By this time I was getting uncomfortable as well for sitting so long.

The day progressed and the kids played with their cousins. Avery tried to swallow something that looked like a bingo chip, then she gave Jessie the Cowgirl a swirly in the toilet when nobody was looking. She wasn't in her own element so things were off to begin with. Then factor in no nap. THEN factor in that she passed out in the truck as soon as we left to go to dinner. THEN factor in that after only a 40 minute nap that she was really, really enjoying we had to wake her up to go into a very crowded restaurant it results in a complete an utter meltdown of epic proportions. I ran out to the truck to get another sippy cup of her milk because the $6 Amy's gluten/casein free pizza we made for her and brought with us was not that enticing to her. As I was rushing back in I could hear her screaming. :( My husband brought her outside to me because she was inconsolable and people were staring.

People were staring. I knew that when I walked  out of the restaurant and all the older patrons kept looking at us. I didn't really care if they were staring. I didn't get a chance to calm her down. To give her what she really wanted.  I just took her and said, "Fine we'll eat in the car."  So as I sat in the car crying, (which coincidentally she stopped crying) waiting for my husband to come out with our food I started to contemplate the rest of the night. I knew it was not going to include Avery seeing Santa on the train. If my husband couldn't deal with the stares of his old town folk then he wouldn't be able to deal with her on a train if she was inconsolable there. I also knew in my heart that it would be cruel to put her on the train and not know if she would enjoy it with lot's of strangers and bright lights. Then of course if she was in total meltdown mode on the train than we would have been those asshole parents that people snicker about without knowing our own reality.

I stayed with Avery in our truck watching Toy Story 1 & 2 on the IPad while the rest of the family went on the train. I could hear the lady over the loudspeaker talking about boarding the train. I could hear the chug chug chug of the train as it pulled out of the station. From my own point of view the train on the outside looked beautiful. As I sat in the truck with Avery I cried and cried. This will be the first of many things we have to walk away from because of Autism. I thought how unfair it was to her that she was missing out on this experience and probably many more like it because of Autism. How unfair it was to Paige as well that her and her little sissy weren't going to be sharing some of the same memories. Paige doesn't understand just yet that Avery is different. She knows she doesn't have her words but being only four years old she won't fully feel the impact for a few years.


My oldest Paige got to enjoy it with her Dada and her cousins and though I tossed him the camera on his way out of the truck and told him to take lot's of pictures I didn't get many. He even finally admitted he sucks ass at taking pictures. I can show you the pictures of the ceiling  in the depot, or the pictures of Uncle Matt with his eye's closed (which I learned is an inside joke between my husband and his brother) but I would rather show you the pictures of some really cute little nephews and my little girl.

Trying to get 5 kids to stand still and look at the camera is insane I think.

I think the nephew on the end is trying to eat that candy cane.

 

Santa and Paige

 *for the price of the ticket, umm Santa should have had a real ass beard and not looked like he was 40. LOL

She loved it, she loved her little silver bell. My husband and her also bought Avery her own silver bell ornament for our tree. Maybe when she's older she'll understand what happened on this trip to see Santa and maybe she won't ever understand it. It was clear to me though. It is our new reality. We will have to cancel on things at the last minute if Avery is having a bad day. We'll have to pass up invites or certain activities because we won't know how Avery will be. We'll have to deal with the stares from people who won't know why our kid is having a melt down over waiting or whatever is pissing her off that day. 

Instead of me getting to say FUCK YOU AUTISM (which I want to do at the top of my lungs sometimes.)

I'll just say It is what it is for now.

Good days and Bad days

Some days with our youngest with Autism are very good. She's in a good mood, she's happily playing. Her sister isn't annoying the crap out of her. She's dancing around with music. She's basically a normal 2.5 year old minus any talking.

Then there are the days where she just wakes up mad at the world. It's a whiny cry from the start of the day. The day progresses into lot's of tantrums and her tantrums aren't just stomping her feet. Her tantrums are full on throw herself on the floor, bang her head on the floor, flip her feet up and down to stomp while she's on the floor. Then there's the hitting of herself on the head. Add into it the refusing to take a nap when it's obvious that she needs one and then doesn't fall asleep to later in the day (thanks daylight savings light change for this last week of completely screwed up sleep patterns.) Followed by the refusing to eat any food. So meal times are a complete bitch. Since being on a gluten free/casein free diet we thought she was getting better when it came to her behavior.

This Saturday it was just bad. Lot's of screaming, unhappiness, tantrums and hitting her head.

 She wore her weighted vest at times and that seemed to help a little. I did a lot of squeezing hugs with her to try to help and mostly she tried to squirm away from me. It was a very frustrating day. I retraced what she ate to see if anything could have set her off and I couldn't remember if there could be something that would. Since going gf/cf I also think she's started to loose weight because she's just not eating like she used to. Her best meal is breakfast, then maybe lunch and dinner is a crap shoot.

Since every Autistic child is different I can't just pick up one book of how to fix things. Which is the most frustrating. We were advised to do the Direct Floor Time Therapy for her. Which at a glance it looks like it's child led playing (without frustrating them) and challenging them (again without frustrating them). The first set of DVD's we have from DFT are let's just say dry and boring. The next DVD and book that was recommended was More than Words which is set up better but there is a lot to cover. The book is bigger than any biology book I had in high school or college and the characters in the book for demonstration look like Caillou the cartoon that whiny ass kid.

Sunday was a better day with her, less tantrums and more wearing of her vest. Which I'm still confused as to how much time she is suppose to be wearing this thing since if they are in it a lot they can become desensitized to the weight that is used to calm them down. Almost damned if you do and damned if you don't.

Then came Monday. We started out with speech therapy then immediately follow it with her parent's day out program she goes to. I never know how that is going to go. She has her good days and bad and yesterday was good. In fact very good because she even pretend played along side other kids and did art. The rest of the day she was in a good mood, she took a nap ( I think * my Dad watched her while I was at PT) but she was still in a good mood when I got her out of her crib and she danced along with Princess and the Frog and she ate dinner. A good day in our house.

I obviously wish for more good days than bad. My husband says we won't know what triggers her bad days until she moves on to something else that will set her off. A ray of hope he is, isn't he? He means well and is very supportive and also right. I know it will be a million different things that can come up on her list that will set her off. I just want that list now.

And then we knew...

Last week we took our youngest daughter Avery to the Erikson Institute in Chicago for a medical diagnostic assessment. I mentioned this in the thread titled Being a Parent of Special Needs Children.  This is basically an exam done by a developmental pediatrician and a team of therapists. Two of Avery's therapists believed before we went into this that she would be placed on the Autism spectrum because of the way she acts or reacts to certain situations. Last year when we took Paige there for her exam they told us before we left that she wasn't Autistic.

The day we left with Avery they didn't tell us that.

They said they would go over everything and talk to us next week. I knew then we were definitely look at her being on the spectrum. Actually I've had a gut feeling for awhile that her issues which are really a lot of sensory processing issues that impeded her ability to function would put her on the spectrum. Sensory processing disorders are not recognized by the insurance industry so they have to give it or put it in an Autism diagnosis for services.

Within 2 minutes of sitting with the Doctor she had told us that she does indeed have Autism. As much as I was expecting those words it still was hard to hear. All we wanted to know is now what? More therapy. What does she need from us to thrive? Direct Floor Time Therapy  How can we help her? Let her lead us to how she wants to engage with us. Will she have a normal life? They hope with therapy yes she can.

Will she mainstream in school? Maybe. The school is the hardest. The hardest part of it. In about 8 months she will be evaluated for Early Childhood preschool. Most schools do not use the Direct Floor Time Therapy program. Will the program for Autistic kids at our school district which honestly I think is great for kids with slight delays like our oldest but might not necessarily be great for an Autistic child. There are NO schools for Autistic children in our area. And most programs follow the Applied Behavior Analysis therapy which is not what is best for her.

Do we have to start a trust for the "what if's" of who will take care of Avery if she can't take care of herself after we are gone? That was brought up by the Doctor as well. I think that made me the saddest to hear that scenario. Who plans that? You expect when you have kids, they grow up, get jobs and leave the nest. You just never really expect to have to plan for that.

She currently is attending a Parents Day Out program at a local church that our oldest attended at her age. I gave the director a heads up about Avery's abilities and inabilities and brought her in early on the open house day. So as to not give them a "surprise" on the first day. After the first week we know we have some things to work on with her but I am hoping that her interaction with other kids will be a good model for her to follow like it was with her sister. As long as we can get her to stop stealing their snacks and drink cups then hopefully it will get better.

So now we are in a waiting/holding pattern for ALL of the equipment her therapists have asked from the state. Now with the diagnosis of Autism hopefully we'll get these items faster but if you haven't heard the state of Illinois is in horrible financial straits and well it can take forever.

Nothing about our love or devotion to our daughter has changed. We just now know what we are dealing with and have a game plan to work on which is a lot better than not knowing, IMO.

Being a parent of special needs children..

Our oldest daughter Paige has a global developmental delay that is primary based on her speech delay that is caused by Apraxia. She spent year 2 of life having 4 different therapists coming to our house and giving therapy to her. She currently attends an early childhood preschool run through our school district where she thrives. During the summer she's attended therapy at the school district for speech so she wouldn't have a set back in the fall. One of my best friends Ruta says that today you wouldn't even know that Paige has had all that therapy because of how she is today.

So for year 2 of Paige's life our youngest Avery had just come in the world a few months earlier. I had had a high risk pregnancy with her. At my 16 week appointment I tested 1/131 for open spinal bifida which required this advanced maternal age mom to either subject herself to an amniocentesis or a Level II ultrasound. We opted for the Level II ultrasound since it was not invasive. At our first Level II the DR and us were relieved to see that everything along her spine looked fine. There was a catch though. My amniotic fluid was measuring on the high side. This is called  Polyhydramnios which can cause congenital defects, intestinal blockage, neurological problems, preterm labor and still birth. Everything else seemed fine. It was just the high fluid that fluctuated at every appointment from the specialist to my regular OB's office. At one point my husband and I really thought the specialist wanted a new boat since I felt fine and looked fine. lol. He kept saying I would likely go into labor early and had me come in for precautionary steroid shots for her lungs in case I did go into labor.

Memorial Day of 2008 I had just sat down to eat lunch and my husband was just painting the new babies room when I felt what must be a contraction. I was still not due for another 3.5 weeks. Ha ha, maybe the Dr didn't need a new boat after all. Before midnight that night we welcomed in the world our youngest and most strong willed child Avery.







As the first year progressed I noticed some issues with Avery that she wasn't progressing like her sister had. She wasn't able to roll on one side, she wouldn't grab with her hands and she looked like she was getting a flat spot on her head from not having the ability to roll in more than one direction. So she was able to get the same therapy through the state that her sister was getting and actually graduated from that therapy after only a few months.

Our pediatrician had brought up that as a sibling of a child who has a developmental delay such as our oldest that our youngest most likely will have her own issues. We were keeping a close eye on Avery's development because of our oldest. We wanted to nip things in the bud before they got to far away from us to handle. Around her 20 month well being visit we brought up the issue of her vocabulary  not being where it should be at. Basically she wasn't making an effort to make sounds or imitate us. The pediatrician advised us after conducting his own developmental exam on her that she should go back into the state system to get therapy services.


This time around we did not have to wait long for services to start and they started within days or weeks for most of them. With our oldest we had to wait MONTHS to get a speech therapist. This time around maybe we waited a few weeks and we got one who had 2 openings a week to see her so we wouldn't have to have 2 different therapists. This time around for occupational therapy we have a weekly visit to a clinic where she plays in a gym that is like this:

This facility is amazing for a child with sensory issues. Until going here we had no idea the level of sensory issues that Avery had. Avery get's frustrated very easily. While here in a compression vest she is able to sit and focus on a task for at least 15 minutes whereas before she wouldn't even try. Her favorite things are the big blue swing and the ball pit in the back under the slide. It completely calms her down while she is in there. I wish we had known about this place when our oldest was receiving services because she would have loved it as well.

This time around I knew what to do from the get go. There is no checklist of things to get tested in the Early Intervention system but from my experience I knew I wanted her hearing tested from the start and not wait til she was almost out of the system (like we had for our oldest because nobody told us to do these things!) Her hearing test showed that after having 3 ear infections in as little as a few weeks that she most likely had fluid in her ears. Ding! Ding! Could this be the reason her speech was delayed? She had ear tubes put in in April .

Almost within a couple of days our little quiet girl became quite vocal. Not true words right away but she suddenly could respond to us telling her, "NO!" although her response usually was a look of "what?" lol. Since having the tubes and starting speech therapy we have been amazed by the spontaneous words that do come out of her mouth at times. She one time asked her speech therapist very clearly, "what are you doing?" My mouth dropped as did her therapists and his student that day. They both heard it and acknowledged it. We know she has the words, just getting them out of her is the process we are working on.

In a few months we will be taking her to the Erikson Institute in downtown Chicago for a medical diagnostic assessment for an official evaluation as to what type of delays and future we are looking at for her. I have a feeling that her issues fall more on the autism spectrum. We recognize that her issues are more sensory and she really needs outlets for these things. We shall only see.

Taking Avery to social settings can be quite difficult at times. At a recent birthday party she was fixated with playing with a tub of ice water used as a cooler for pop cans and juice boxes. It wouldn't have been so bad if 1) she wasn't dropping the cans of pop on the floor (sorry!) or 2) trying to get in the tubs of water. Redirecting her without having a meltdown is hard. It's especially hard when people don't understand what you are going through. In stores or restaurants (impossible with her) people just look at you like why can't you control your child. Well that's not necessarily it and people don't know that or can't comprehend that. My child is not the way she is because of anything that we did or did not do. It's overwhelming on the days when she has therapy and you see how she can change so much with the addition of wearing a weighted vest or compression vest. You wonder if you have the fucked up genes or does your husband or is it both of you put together that resulted in 2 delayed children. sigh.

So the next time you see a child out in public that can't communicate his or her needs or is just flat out not happy with the world that day step back for a minute and think before you roll your eyes or make a face or want to tell that parent off. You don't know what they are going through and the only thing they need from a stranger is a few words of encouragement that things will get better. My oldest daughter is proof of that and we hope the same for her sister.