A Day of Hope

On Friday September 30 I spent the day at the Chicago Autism and Asperbergers Syndrome Conference where the featured speakers were  Dr. Temple Grandin and Dr. Jim Ball.  Temple's mother Eustacia Cutler was to speak as well but could not due to bad weather on the east coast. So instead of speaking for 1.5 hours Temple spoke for 3 hours and answered questions from the crowd. You may not know who Temple Grandin is but she is the subject of the wonderful HBO film named after her. I watched the film earlier this year and it truly is a window into the workings of a child with Autism. She is probably the most positive, influential, successful person with high functioning Autism that is out there.

Before the conference started she was signing her book and I got to talk to her for a brief moment.

For some reason I felt like BAWLING when I started to talk to her. I could feel myself getting choked up. I told myself "keep it together" for just a minute.  I thought to myself  crud I should have bought a whole bunch of tissue with me today as well.  She is an absolute firm believer that children as young as Avery need the most intervention and the most therapy and one:one attention. Whether or not the parent can do it she advises to implore members of your community to help out and spend time with your child. That the minimum of 20 hours a week needs to happen besides what she is getting at school.

Those were her words to me that Avery is not getting enough and if we don't get her more help we might end up loosing that window of opportunity. That probably deflated my balloon of joy that morning. That feeling that once again I feel like I am not doing enough for her crept back up on me.  I don't know how other parents feel after they leave these type of conferences but after the Autism One conference in May and this conference I felt like I wasn't doing enough but that feeling this time was also joined by the feeling of hope as I left that day.

It wasn't just listening to Temple speak of her experiences and how she processes information. She is very persistent until she get's the answer she is looking for. If you have seen the HBO film then you know the way she talks and her demeanor is very straight forward. Claire Danes portrayal is spot on. She did a tremendous job of getting into the role. It was just amazing. Part of being there yesterday was another professional in the Autism community who was speaking about early intervention. His name was Dr. Jim Ball.

Dr. Jim Ball wrote the book titled, Early Intervention and Autism: Real-Life Questions, Real-Life Answers. I actually was not gung ho about this part of the conference. I had never heard of him and wasn't familiar with his book.  I thought I would listen to the first part and if it wasn't something I thought was geared towards our situation that I would call my husband to come get me since he was only at work a few miles away. I absolutely and utterly glad that I stayed for his talk.

Dr. Ball is not only an engaging story teller but he tells his stories of the children he has helped with great pride, joy and admiration for the strides these children have made. He talked about all degrees of severity of the spectrum and how they can be helped. If you feel like there is no hope for your child or that you aren't doing enough for them like I was feeling then to me this was a ray of hope. I wish I had a copy of the talk to show my husband and to others or even myself to be able to replay on those days that we are just battling Autism with all we have.

I know Avery has it in her to talk and be able to control herself. I've watched her have the meltdowns and I've watched her calm herself down when my niece sat to close to her at lunch back in the spring. I've watched her completely fight me on something one minute and then a little light bulb goes off in her head and she turns her attitude around and does exactly what I asked her. Sometimes I think we baby her to much and it shows when her big sister says, "Mommy Avery can't do that she's just a baby." Well the baby is over 3 and we need to stop making excuses for her.

I think that's probably the best message I got out of the conference and that is not to treat them like an Autistic kid but a kid who happens to have Autism. Does that make sense? Put the child first and the Autism will become second. Don't say they can't do something because they have Autism. Teach them to do things like being potty trained and having social skills and they will go far in life. I think this sounds easier to me because I don't believe that Avery is that far down on the spectrum as the Doctors had us feeling when she was first diagnosed.

I'm glad I see Avery as Avery and not just my Autistic daughter Avery.

When they are sick is when there is peace well sorta of..

Little one was sick all of last week. So sick in fact at one point we thought she would have to go to the hospital because she was becoming dehydrated from not eating and drinking enough. She had a fever for most of the week with an ear infection. So from Saturday to Thursday she slept and slept.

She was so sad to see like this. On Friday morning she woke up before any of us and she was a boundless amount of energy. Still squawking because her throat was still bothering her but we knew she was going to be ok.

On Saturday it was a beautiful day here. Sunny with a little chill but beautiful for an early not yet Fall day. The majority of the morning she was screeching. Joy. Then at one point she kept pushing me or my husband into the kitchen and all she wanted to do was look out the window so we had to hold her up to do that. Whenever we tried to put her down she cried.

Then we decided to just let her lead us to what she wanted. She led me to the door, she grabbed the handle to turn it. She wanted to be outside. Her wish was my command just to make her happy. She lead me to the back yard. At one point she even pushed me out of the yard and closed the gate on me as if to say "ok I'm where I want to be, I don't need you now".

She grabbed the last two dandelions (amazingly!)  in the yard and proceeded to walk around with them for a hour. She went down the slide a few times but what she wanted to do was just play with the sticks and the rocks. After a week of being cooped up in the house I obliged her and just sat and watched her as she tossed them from one side of a little fence to another. She was happy.

At one point I tried to see if she wanted to go inside and I got some yelling from her so I let her be. My husband came out to stay with her while I went and got her a sippy cup and sandwich for myself. She saw her sippy and grabbed it and went back to playing. After about another half hour I opened the gate and put my hand out and asked if she wanted to go back inside. She with no issue grabbed my hand and walked back in the house. A successful outing for her. After being sick all week and not feeling the wind on her face she got to spend time outdoors and it made her happy.

After she went to bed that night I thought about the day and how we struggle with not knowing what she wants because she can't verbally tell us. I wrote this on my Facebook status because this is how I really felt that night:

Having a nonverbal child is a lot like charades. Except the game really kinda of sucks and you can't see an end in sight.

I think it's the way we look at it right now but it's brutally honest to me.

My husband and I discussed what we could be missing in helping her. I'm sure the list is long right now.  It really is a puzzle because hopefully we'll find the right piece that will help her one day.

Did you grieve?

Did you grieve the diagnosis of Autism? I came across this post the other day and it set off a firestorm of comments on Facebook. Here is the column: Grieving Autism? Not so much

I can honestly say I did grieve the diagnosis and still am. We are approaching the 1 year anniversary of Avery's official diagnosis. I am more hopeful today than I was a year ago but I still feel as lost as I did a year ago.

I had my moment a few months ago about how I wondered how it was to have a normal child. I was walking out the door and my father made the comment about "when is she going to talk?" He didn't understand that all the play therapy was actually helping her. I cried when I took her to therapy because i just thought while driving there "What would it be like to have a normal child?"

I literally had no idea. Our first child had a global developmental delay. So she had therapy 4x a week and then her sister entered the world of therapy and that's where our world turned. My world for the last 3 years has revolved around 1 child or another in therapy. I wasn't prepared while they were in utero if they were going to have special needs. Physically everything looked good. Neurologically it was a different story and only one that could be told later on.

If you have the tests or ultrasounds and it shows a positive and not a false positive for chromosomal abnormalities or a physical abnormality and they tell you ahead of time you start the process of how to process it all much earlier. It also destroys or eats away at the joy of your pregnancy. I had that with Avery. Half way through I was termed "high risk" having high amniotic fluid that was suppose to lead to neurological disorders (never mentioned Autism) or extra digits or less digits. So while the last half of my pregnancy was spent in anxiety of whether or not she would come early or show the dr's wrong (she was indeed early) I also never thought about Autism during that period. I just wanted to make sure she was there. Breathing. Alive.

So once we got through the initial "She's here!" "She's physically all there!" we didn't really think to much about anything else til later when we started to see the changes or not meeting the milestones.

Then you are sitting in a DR's office and she hands you a report. Instead of reading through it all you flat out ask, "Is she on the spectrum?" And the reply is "Yes." Your world stops as you know it. The DR. starts to talk about the report and how she see's your child's future and it's a big blur. Because it's A LOT of information to absorb at one time.  Trusts? Maybe mainstreaming? You don't get a moment to swear, have an out burst, to hit something. You cry a bit and continue on with your appointment.

Then you walk outside and it's a beautiful early fall day. The sun is shining and it's still warm outside. You then feel like you need to do everything NOW.  NOW.  NOW. So you either process what has happened or you put it inside and you don't deal with it until later. For the last year I've been thinking of all of the things we have lost. We physically didn't lose her but we did loose our vision of her future. She still is a happy, cuddle bug who is a big sweet heart. That's never been lost. But what's been lost is deep inside her. We know she knows whats going on around her. We know she has the words. Why they are not coming out of her mouth infuriates me to no end. Why she screams non stop some days I have no idea. Why she hit's her head we know is out of frustration.

All of these things are a part of lives today. If you ask me if I would like a day of the Avery that doesn't have Autism, yes, why yes I would if only you didn't take her away again. You can't barter like that though. That's just not how life is. It is what it is. The word Grieve may not be a wonderful choice of words for someone who has made it through the other side or someone who views Grieving as part of death and never coming back but for someone who views Grieving as losing parts of your life and moving on then well I'll take it for what we've been doing the past year and I won't be made to feel ashamed by doing so.

School year 2011

I should probably post more than once a month, huh? Sometimes I don't think I have anything to say except that we are just keeping on with what we are doing.

The little one started back at school while the big one started Kindergarten. Both are half day classes in the morning. So I get a glorious 2.5 hours kid free. But man does that 2.5 hours fly by!

The school year started off with a little bit of a hitch with the school bus in the am and in the afternoon but after one angry call to the dispatch office things were all good the next morning and has been since then.

On the little one's first day of school.

A few things we have noticed since the start of the school year. The letters sent home daily from the aide during the summer were all doom and gloom. Now with a different aide all it's missing some days is rainbows and glitter all over it. She seems to be doing fantastic on some days. On other days I get little snippets of "was uncooperative" "didn't tolerate the music class with other kids". We really don't know what to make of it. My husband thinks they are playing "oh shit we have to make it look like she has some progress because we have her special IEP meeting in October" and I think well it could be that OR she just has a better grip of being on a schedule and routine and what she wants to do. I would love to know.

She still doesn't have a communication device which is irritating because they decided to wait until they knew she could point to her choices. Well this kiddo is pretty smart. She can figure it out and learn it and if you give it to her she'll show you what she wants. 

Yes, IPad and old IPhone and their peace in the galaxy.

She is still going to OT services at Easter Seals with a different OT. I thought all these changes were going to send her to maximum freak out. Well she hasn't been that bad. We've had the bouts of head hitting out of frustration but it's not on the floor or the wall. When I walked her into therapy and her therapist came out for her she took her hand and started pulling her to the therapy room. That makes me happy.

The big freak out I had over the summer about her previous OT sudden departure and then suddenly having to find a new provider that we could afford seemed to turn out for the best for her right now. This OT also recognized that even though she is happy, goes with the flow at the beginning of therapy that at the 40-45 minute period is when she is just done with you. I recognized that over the summer when just playing outside in the pool. She would be playing for about that amount of time and after that she had to go "find some mischief".  For better words. lol.

So we are keeping on with things. Not seeing a big explosion of words from her but not really sure if that will happen one day. She's got the word Wait down pact now which is a lot better than NO! lol.
Oh and when does the constant screeching end? Seriously. That's a thing she picked up over the summer and it has not stopped. They make wine for that right?

When life hands you lemons you..

suck it up and move on.

A few weeks ago I posted about how we suffered a blow to Avery's therapy team here. She lost her OT she's had from the start, she maxed out of the therapy for our insurance and we lost the extra income that would have been helpful to pay for out of pocket therapy for the rest of the year.

I went to work ASAP and was able to find an interim therapy solution at Easters Seals for the time she had a break from the summer to fall session of school. So far so good. She seems to not have skipped a beat with the therapists much to my surprise. She has attended to activities with the therapist and even told her "all done" when done swinging which is huge. So for an interim band aid it seems to be working.

I want to get her on the waiting list for the therapy place I go to for my physical therapy for my foot. 
While at therapy today I saw the PT who worked with my oldest for about a year while she was in our states Early Intervention program. She also worked with Avery for a short time from 5-9 months ( i think I'm fuzzy about that time period).  She really adored our girls and they were great with her.

When I talked to her today she was really shocked to know that Avery has Autism. She kept saying, "but she gave me good eye contact", "she wasn't withdrawn", etc. I mean I am not sure how much she could have been clued into with her at that age because she really didn't start to show major signs until she was about 2 and the sensory issues didn't explode until she was in therapy. I mean there were small things to start with but nothing big during the first year. It's all the developmental milestone's in the second year that she didn't hit.

I saw a few issues the first year but did anyone see the big issues the first year?

Like when I told the DR who delivered her that she has Autism I kinda of felt bad telling her about Avery's situation. It's not like she did it to her or she could have noticed anything to cut it off at the pass. I mean it is what it is. She has Autism. In the grand scheme of things she's lucky. No physical health issues, she's not in a wheelchair, she doesn't have seizures. When she starts school again in a few weeks she'll be getting more services, more attention and God willing things will blossom for her.

I'm trying to keep things in perspective these days. No matter how I think our life sucks, I'm pretty sure someone else has it worse off and is envious or wistful of the life we have. I don't mean that in a cocky way either. When I have a moment and I talk to my BF and we are both having a bad day, and we both go "I wonder what it would be like to have "normal" kids" you know a life that does not revolve around a therapy schedule we remind ourselves of these things.  I'm just counting my blessings. Which is something I sometimes forget to do and need to do more of.

Do you tell strangers your child has Autism?

Like out of no reason than to explain their behavior?

I was out running errands with Avery this morning. Our first major stop was Walmart. She was doing pretty good today. She was being very vocal but happy. The cashier I had was pretty fast today (shocker). She was saying she had all the babies in her lane today and then corrected herself when she said Avery wasn't a baby. I said no not really but she doesn't really talk so it's like having a baby. She then was telling me about her 2 year old who was to receive speech therapy through our states Early Intervention program. I mentioned Avery had Autism and she said she thought her daughter had some mannerisms that alarmed her. She told me she was waiting for a speech therapist.

This is where I turned off just being a Mom of a kid with a Autism into the Mom who knows how to work the system. I then rattled off as fast as I could because of course a line was forming what she needs to do with our EI system. I told her she had to be on her case worker's ass like she owe's you money. No joke. Next tell her you want the diagnostic medical evaluation done. Just to get the ball rolling for that because there is a waiting list for these things. That she can get it scheduled for 6 months after she starts receiving services but it has to be done 90 days before their 3rd birthday when they age out. I gave her the name of the group we took Avery to for her evaluation. I wished her the best of luck and we then left the store.

Two more stores and by the last one Avery was at her limit and it was time for lunch. She did well for herself and was a happy camper when we got home and ate lunch.

I told my husband about my experience at Walmart this morning and I mentioned I should just get cards made up with the basic information for a family starting EI or starting their therapy journey. It would have to be an 8x10 card because of all the information you need to know though.

My experience this morning reminded me of two Mom's I met at the Autism One Conference in May. The first Mom was the mother who was of Asian descent who had a hard time expressing herself and didn't know where to get help for her child. The second Mom this reminded me of was of another mother who's son had Autism and she said that she's always telling people at her kids school that he has Autism. She said she didn't want to feel alone and needed to know who was like her.

I think I want to help Mom's like the first one I described because if you don't know where to start it's a hard road and it's only better if you can get help from others. I feel like the second Mother because I'm not afraid to tell people my child has Autism. There are more and more kids with Autism today than when I was growing up and someone almost always knows a family with a kid on the spectrum but sometimes you meet that Mom who's not sure if her child does or does not and needs the help in finding out.

There is nothing wrong with saying to others my child has Autism. You never know if the next person you tell will be someone who needs help or just a push in the right direction in getting help not just for their child but even for themselves.

Why do I blog?

The blog is where I write my thoughts, discuss my problems with running or issues with Avery's Autism.

If you are a part of my family and you think this blog is to humiliate or embarrass a family member you are sorely mistaken. If you think lowly of this family member because he is human and has had a hard time coming to terms with Avery's diagnosis than you are not viewing him very fairly. And it is your issue and not mine.

Why am I writing this? I have mentioned my Dad a few times on this blog. In fact yesterday afternoon after being in hysterics for  hours I went through the blog and counted about less than a handful of posts that mention my father. I was so upset yesterday after a phone call from a family member I scared my oldest daughter who didn't understand why I was upset and crying. Who then proceeded to tell the school bus driver that Mommy was crying. Awesome.

In the beginning months after Avery's diagnosis of Autism my Dad being my father, my children's grandfather and general overly protective loving parent had a hard time with Avery's diagnosis. He didn't think she had it, he didn't understand how the play therapy was going to help. That's not his fault though. That's just how many older family members view a diagnosis of Autism through out the special needs community. Through all the blogs I've seen on Autism it seems that many grandparents are left hurt, bewildered and lost in how to help their children. All they want to do is help in some way.

I previously had a meltdown a few months ago about something that happened as I was leaving to take Avery to therapy and my Dad was staying with Paige like he does every Friday when I take Avery to therapy. So when I came home from that therapy session I looked through the internet and found this article: Grandparenting Special Needs Children. It is a wonderful article that outlines what they as a grandparent can do to help. I also printed out articles about the different type of therapies she would be doing. I printed out articles on sensory processing disorders and ways she needs to regulate themselves. I wanted him to understand our world a little bit more. I believe after giving him these articles in an non-confrontational way that he was receptive of the information and took it to heart. Because since then things on that front have been much better. 

So if you have the misconception that my Dad is not helpful, or a jerk or ignorant about Avery having Autism than you probably should pick up the phone and call me because that is not how the situation is. In fact what would be really nice is if you are a family member and you think of my Dad, how about giving him a call? I'm sure he would like that.

On that note I know many people have heard Avery had Autism through the grapevine but I have never heard from them. Besides the one's who recently heard through my letter of donation request, I have not heard a single peep from other family and friends. You might not know what to say and that's ok. Heck even on our good days I still don't know what to say.  So while we deal with Avery's diagnosis as a family the prayers are appreciative but knowing my family and friends are supportive and helpful means more right now. Autism is not a death sentence for a child or a FAMILY. I would hope that Autism can bring families closer because I know it is stressful, it should not tear them apart but bring them together.

It may seem like I am airing my families dirty laundry and I probably am in a small way. I just wanted to clear things up for those silent family followers. What we need is support. What I don't need is someone calling me berating me for how they perceive I describe my father when they are not in our lives in a day to day basis.

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