Friday, April 03, 2009

Awareness -of Autism

April - Autism Awareness Month!

Well, day two of Autism Awareness month -and the date that is labeled as Autism Awareness Day -are both gone now and I'm really off to a great start -late, as usual.

And to what to I attribute my "lateness?" Well, you try planning ANYTHING with two kids -ages 5 and 3 -both autistic too -loose, lively, and also lovely - around you and see how well you do with being on time for lots of things!

I had planned to insert other information in my post intended for Autism Awareness Day (which was yesterday, April 2nd, in case you didn't already know that bit of information) but as often happens in this household, the best of intentions or plans of mice and Grandmas, often goes awry.

I did do some research, printed out several pages too that I didn't get around to re-reading to get that information ready to put in here. Why? Well, mainly because I did that surfing while Maya was in school and Mandy had taken Kurtis to the doctor -which gave me barely enough time to do the surfing and print the stuff out. When they got home -all at almost the same time -I had to work then on supper preparations (I left the vegetables and setting of the table to Mandy so I could sit for a bit and do a little more work on the counted cross-stitch I've been working on all this week.)

After supper, I couldn't get near the computer as both the step-granddaughters were here for supper last night and they swooped down on the computer and had it tied up till after 8 p.m. when their dad took them home. After they left, Mandy honed in on the computer and by 9 p.m., I couldn't keep my eyes open, couldn't concentrate so off I went to bed!

Around 10 p.m., Mandy brought Maya out to my room and she crawled in bed with me -falling asleep then almost as quickly as I had drifted off about an hour earlier. Then, around 1 a.m., I woke up -pretty much true to my form of short sleep episodes spaced throughout the day. Four hours! Not that bad in the general scheme of things but another hour would have probably been better.

Mandy and I had a cup of tea while she finished up doing her "thing" on the computer and went to bed then around 1:30 or shortly thereafter. And a little after 2 a.m., I'd just started on doing my blog reading when I heard a sound coming from the playpen. Turned around and there was Kurtis, standing up, all smiles and ready to play! It's now 6 a.m. and he's still awake after having imbibed in two full bottles plus doing a stripper act -tossing his clothes out on to the floor, one item at a time till he was down to nothing!

But at least he was being nice about his wakeful time -no screaming or screeching which is often the norm when he does his noctural rousings.

But I digressed there -a good bit too -from what I planned for this post. However, I thought I'll save the more technical information for another time during this month and give you a little run-down, of sorts, of life with Maya and autism.

Starting with this picture, which was my introduction to my granddaughter, Maya Kirsten, one day old!
Just as had happened when my older grandson was born and I had gone to see him at the hospital when he was only about 3-4 hours old, I had almost the same reaction to Maya as I'd had to Alex -utterly fascinated, excited, and in awe of this little girl in my arms. But my reaction to Maya also was just a bit different than when I first met Alex, first held him, and I don't know how to explain it other than there was something about Maya, right from the very beginning, that seemed to speak to me, telling me "Grammy, I'm very special and I'm going to need a lot of extra protection and care." And, I remember when I held her, just feeling the need to hold her closer to me, to try to protect her and shield her more than I had felt with Alex or even with any of my own children when they were newborns. Call it a kind of autism esp or some such, but it was this strange feeling that washed over me with her. And it's been with me ever since that first "holding" too.
This was Maya's first meeting with her Uncle Clate -probably the first time he'd ever held a baby that small in his entire lifetime -but although he was very nervous over holding her, he did fine and to me, it seems you can see the bond forming between them just by the way they are looking at each other.
Here's Maya, with her big cousin -Alex -taken at my Aunt Mike's home (Maya and Alex's great-great-aunt). See -at a month old, she already had mesmerized another male member of the family.

THe above photo and the one immediately below here are two of my alltime favorite pictures! This is Mandy and Maya, taken when Maya was about three months old. I wish I had a scan of a picture taken of my daughter Carrie,when she was three months old and also, one of myself too at six months to put them side-by-side to the below photo as, looking at them, it is almost like looking at the same baby in the three pictures. (As a matter of fact, my Mom showed a friend of mine that baby picture of me and told her it was a picture of Carrie and my friend could hardly tell the difference after Mom showed her the photo then of Carrie. Amazing, huh? You'd never believe that today though! LOL)
This next photo -taken when she was about 8 months -was about the time when my older daughter and I were starting to notice that she was avoiding eye contact. Eye contact -or lack, thereof, is one of the earliest warning signs of autism.
The above photo of Maya was one of my Aunt Mike's favorites of her. Mandy put a 5x7 of that picture in a clear frame with a magnet on the back and my aunt had that picture on her refrigerator door up until the time she had to leave her home to go into the nursing home when Maya was three years old.
Here's Maya at age one. By the time this picture was taken, it was becoming more and more noticeable that she didn't like to make eye contact.

Then, as she started to walk about two months later, she walked then -still does -on her tip-toes. The toe walking was something Mandy had done too when she was a baby and my Mom had noticed that in her and mentioned to me that it was often an indicator of autism. I think that was probably the very first time I ever heard the term "autism" used, now that I think back on that. However, the toe-walk thing was something we noticed but didn't get too hyper about since Mandy had done that and also, the kids grandmother on their Dad's side was a toe walker -still is for that matter!

Those two things though were starting to worry daughter Carrie and me. Before Maya was a year old, I was beginning to worry that maybe she had a hearing problem because she would look at something and if you tried to get her attention, it was next to impossible to do that. Although I had periodically mentioned these things at her visits to the pediatrician, it wasn't until Maya was about 19 months old that the pediatrician agreed that maybe hearing tests might be warranted.

At that same time, the doctor also referred Maya to a Well-baby program for evaluations to be done to ascertain if there were also possibly developmental delays.

Those evaluations revealed that yes, she definitely had several developmental delays although they added that those evaluations might change too, depending on the results from the hearing test.

That summer, she had two hearing tests with a specialist in DuBois and was also referred to a hearing specialist in Pittsburgh. No hearing issues were found though so, as a result of the initial evaluations, it was recommended that therapy be started for Maya to work on the developmental delays. Thus, she began receiving therapy in June of 2005 but was not officially diagnosed with autism until April of 2006.

From the beginning of the therapy -for behavior/play and speech -it was eight months before she was able to say her first word -which was "Two" in response to our asking her how old she was. That was in February of 2006 and by June of 2006, she had learned to count to over 100 and could also identify and name all the letters of the alphabet. Her vocabulary wasn't conversational at that time, but she was learning a word here or there, identifying various objects and such.

When she first started to receive the behavior/play therapy, although she had toys of all types, she much preferred to pick up a piece of paper and holding that paper, would then run through the house. The toys held no real interest for her for a long time. And those actions we learned were also hallmarks of autism as was her tendency to line things up. If the therapist working with her would put six matchbox cars on her high-chair tray, her first reaction to those cars would be to set them up in a line. She also did that with block too and the blocks -if they were wooden with a letter or number on them, she would set the blocks up so each block had the number or letter facing up -ordering things. Just another sign there telling us in a subtle way that the autism was present in her.

Thanks to the two therapists -Kerri and Mandy -who worked very hard with Maya during that initial period from June of 2005 until August of 2007, it gave Maya a good base to build on from there. Although she would have been eligible to start attending the school program she's been in since September of 2007 as early as October of 2006 when she turned three, we decided not to send her to that school until she was almost four. Since she started that school program, she has made many, many advances and now will be entering kindergarten in our local school this coming fall! Right on time for her age.

Although she has done very well and is now even learning to read too, and though a lot of the markers of the autism have faded a good bit, she still has difficulties with somethings. Potty training is coming a long a lot better now -thankfully -but social situations sometimes are difficult for her. The meltdowns too have diminished a good bit but that's a tricky thing too. They can return in the blink of an eye and over something that maybe 10 minutes earlier, she was fine with but all of a sudden she decides no, it's not that way at all, after all!

I think sometimes the meltdowns are the most difficult to adjust to. One thing we learned from the speech therapist was to put a hand on Maya's chin and get her attention then focused on us by doing that. Quite often, if she is in a meltdown and we do that, she will calm and quiet somewhat so you can try to talk to her, get her to talk to us then too, and then, often reach a bit of a happy medium with her.

And that's all the farther I'm going to go today. Over the month, I' going to try to take you on a journey if you will, with pictures of Maya over the years and of course, Kurtis too, in order to try to give a little more visuals of what life is like in this house with these two autistic children who often, very much, rule the roost here!

If someone had told me when my kids were little there would be a day down the road when I would find myself cooking two different entrees for supper -one for the adults and a separate thing for the kids, I can tell you then I would have boldly asserted that would never happen because as I used to tell my kids, back the, "Sit up, shut up and eat!" or "You'll eat what's on the table or go hungry. Just because I work in a restaurant doesn't mine I'm running one at home!"

Nope! That was never going to happen to me.

Boy, how kids -and autism -will and does change you!


Hammer said...

Those are some cute baby pics.

I didn't know exactly what kind of learning therapy was done. Sounds like what I tried to do with my son with his ADHD.

I don't like holding babies, I'm afraid I'll break them. But I will change a diaper if I have my gas mask.

Linda said...

Those are all gorgeous pictures! I can see why you are most definitely a proud grandma - albeit a tired one!!

Maggie May said...

Lovely photos of baby introductions!

Life is not easy with an autistic child.
My grandson is visiting this weekend. Well both of them are! They have to be separated at night now, as elder one prevents the younger from sleeping & seems to have no idea of how much he gets upset by it. Sometimes the *ordinary* sibling suffers when living with an autistic one. Have to think out how to handle this. At thirteen (almost) things definitely get harder. Wish I had more stamina!

SnoopMurph said...

I love the photos of Maya through the years and it's great to read her story to date.

So wonderful to read how her successes and your loving descriptions of her despite all of the difficult meltdowns.

Thorne said...

What a lovely intro to your home and family. I'll be looking forward to reading and learning more about autism. Happy OtGF!

This Eclectic Life said...

Maya is so gorgeous. And, lucky to have you in her life! I hope you share more about autism. Sometimes I tell stories to autistic kids in the schools, and I usually recognize them by that lack of eye contact. I'd love to hear more from a family living with it.