Sunday, April 04, 2010

Acceptance and Awareness

If you read my blog regularly, follow me and my rambling posts, you know then that I am a very, very proud grandparent! (Okay, I'm also a very proud parent too of two beautiful daughters and one terrific son, but I also have three grandchildren who have made my life more beautiful than I ever thought life could possibly be!)

And, with respect to my grandchildren, you also know that my younger daughter, her husband, their two small children as well as my son-in-law's oldest daughter all live with me so I am a grandparent with access to the grandkids 24-7!

With that in mind, you also already know too that those two younger grandchildren both have autism. My children and I also participated in the Autism Speaks Walk over at Penn State the past three years too in an effort to raise funds for this cause. (This year, we were unable to participate due to many conflicts in our schedules to the date of the walk so we took had to take a "leave of absence" so to speak.

However, and although here too I am late in getting myself organized and planning my posts pertaining to autism, I will be trying to post things throughout the month of April in recognition that April is Autism Awareness Month.

Autism is, if you aren't already aware of this, a brain disorder that affects many, many children and adults. Current reports today say it affects one in one hundred individuals although in some articles you may read the numbers as being one in 150, another one I saw recently said it is one in 90 that have autism or fall under the autism spectrum.

That's a whole lot of people, ya know!

A lot of people who are unaware (who on earth could that possibly be now with all the publicity that is showered on us by the media these days) of what it means to have autism; what it means to be a parent/grandparent too, of someone with this disorder.

And that's the part I want to address in my posts -what it is like to be a grandparent to a child with autism.

I will not discuss things that also are often in the news with respect to Autism and that is the controversy pertaining to autism and vaccines. Why? Well, mainly because I don't believe that correlation actually exists. So that, for me, is the end of that discussion.

When my granddaughter was born and the very first time I saw her, held her in my arms, I don't know what it was but there was something that came over me that told me this little girl was so special, different, and that she was going to need some extra special care and guidance.

It wasn't that she looked different from other newborns because she didn't. As a matter of fact, she was just plain gorgeous and no, I am not being just a bragging old grandma when I saw that because from the very first that we took Maya out in public and others saw her too, they also saw what I saw and that was that she was just a perfect, beautiful little baby! Yes, she was!

But to me, holding her that first time, it was just a feeling I got that ran through me, nothing I can describe other than that.

Early on though, by the time she was 7-8 months old, my older daughter and I were noticing little things, subtle things, that got us to wondering -and also worrying a bit too -that there might be something awry with this sweet, precious baby.

The very first thing that we noticed was that she would not -or perhaps could not -make eye contact with us.

Then, when she started to stand, I began to notice that you couldn't get her to pay attention to anything either. At first, I worried that she might have a hearing problem but I conducted my own brand of a test -no, it wasn't scientific, but it served my purposes -as I watched her one day to gauge her reaction to the tv set. (She would watch the tv screen for very long periods and you couldn't draw her away from the images there.) So one day, the tv was off and she was in her playpen, occupied with something else, but when I turned the tv on, using the remote control, the tiny (very, very slight) sound that happened when I clicked the tv on was all she needed and she was up, standing in her playpen, eyes peeled to the tv screen, waiting for the pictures to appear. That told me then and there that her hearing was intact!

Trying to play the little teaching games most all parents/grandparents use with babies -the "So big" thing, trying to get her to point to body parts, trying to get her to verbalize anything, all seemed to no avail or no attention from her. When she began to walk and at that time, most babies have certain toys they like and the identify then, she ignored most of her toys much of the time and instead, would pick up -often, just a piece of paper and would carry that around the house, paying attention only to that and ignoring people around her, toys around her too.

I went with my daughter to all of Maya's "Well-baby" appointments and I mentioned to the pediatrician at every examination things I saw that didn't appear to be quite right with Maya but each time, the doctor seemed to just blow me off. Guess she figured I was just an old-school grandma who wasn't up to par with raising children today.

Finally, when Maya was about 18-19 months old, the doctor herself noticed a little of the variations I had been mentioning before and this time, she decided to have Maya's hearing tested. But more importantly, she referred Maya over to an agency in our area that evaluates babies, toddlers as well as older children for the possibility of developmental delays being present and that was the best thing ever that happened -for Maya -and for us too!

The agency sent a team of four specialists to evaluate Maya in our home setting and their determination, initially, was that she had developmental delays in several areas. Their recommendations hinged though on the results of the hearing test and when that came back (just like my non-scientific test had) that she showed no hearing problems, the immediately set up a program for her with a speech therapist as well as a behavior/play therapist. The people selected came to the home one day a week for roughly an hour at each visit by each therapist and they began working then with Maya to help her to overcome the developmental issues they had diagnosed.

These two individuals became from that point on two of the most important people in Maya's life as well as two very valued people to us as we watched them work -and work -with her to change the way her developmental process had been running.

Slowly, but surely, we began to see Maya emerging, learning, adapting to her surroundings, playing with toys in a productive manner and finally, after 8 months of the therapy, she said her first word too -and that word -"Two" which she pronounced as "T-chew!" This was in response to our asking her how old she was and then we would say "Two" and finally, when she was about 28 months old, she answered our question about her age and repeated it -several times -so we knew she was responding correctly.

From that point on, she began talking more and more -and learning more and more too! All kinds of things! By the time she had been "talking" for about four months, she was beginning to learn the alphabet -to say the letters as well as to identify them on sight too. And she started to learn the numbers and counting so by the end of that summer, she knew the complete alphabet, knew the numbers 1 thru 10 and even beyond those so she was counting to over 100 and could do it ascending as well as descending (counting backwards, ya know).

Needless to say, we were ecstatic! But she still hadn't been evaluated by a psychologist or a psychiatrist to determine if she was just developmentally delayed or if the basis for her issues stemmed from autism.

Finally, she was seen by a psychologist in our home and his determination was that she is yes, autistic, but is in the category of "PDD-NOS, high functioning." Once the diagnosis was made and it was official, the agency set about then to work with her in more specialized ways to help her to learn.

When Maya was 30 months old, her little brother, Kurtis, arrived on the scene and when he was about 6-7 months old and we began to notice many of the same attributes evident in him too -that we had seen in Maya -we notified the agency that we wanted an evaluation of him as early as possible so the same team who had initially evaluated Maya came out and did the same battery of tests on him then too.

One of those therapists told us the day they evaluated him that often they see parents who have a child with autism and suspect it being present in a younger child that the parents often tend to see things that aren't really there and that was what she thought was probably happening with us and Kurtis. That is until she and the others completed their tests and she told us then that in her professional opinion that we were correct in our thinking and it looked to her that most likely he would also be diagnosed as autistic too. So, we were not in the least surprised then when the psychologist did his evaluation of Kurtis and gave us the diagnosis -making it official -that yes, Kurtis too had autism. His official diagnosis differed from his sister's though in that he was diagnosed as being "Classic Autism."

Now people around us -friends, family, members of our church, often upon learning that not only had Maya been diagnosed as autistic but also her little brother too -would often tell us how sad that must be, how difficult it had to be to get such terrible news.

And let me tell you this now -for once and for all -yes, I would much rather have not had this diagnosis put on my two little grandchildren but it changes nothing whatsoever in how I view either of them, how much I love and adore them for who they are regardless of the autism factor.

All the autism means -to me -is that they learn in a manner different from the way you and I learn things. But learn -oh my -that they do and they do it in spades too sometimes too!

When Maya was three, the agency said she was eligible for us to enroll her in a special pre-school program they have available and the choice was ours whether we wanted to send her there or not. Because of some of her particular quirks, her level of maturity at that time, we decided not to send her to that school program then but rather waited until the fall when she was almost four to enroll her in that program. And for her, that was the right move.

With Kurtis, when he turned three and the same offer was made for him to be enrolled in that program, we decided to send him beginning when he was 38 months old and he has blossomed with that pre-school training!

He had no vocabulary at all at the time we sent him to this program almost a year ago and today, you can't imagine how vocal he is! True, because he does have some speech issues, it can at times be difficult to understand what it is he is trying to say, but overall, he does very well much of the time in speaking, in getting his point across now.

They both have their own little quirks but don't we all?

Maya often obsesses about some things so we have to pay particular attention to that aspect with her. Kurtis has his things that still often frighten him -sometimes they come up unexpectedly and we learn about a new fear of us -but for the most part, they are either on the decline or we have or are learning new ways to work around them with him.

Would I trade either of these sweet children though for children who would be classified though as neuro-typical -or in common terms "normal?"

Not on your life!

Would I rather neither of them had autism -well, certainly -but that comes not from the fact that I would prefer they not be considered to be something strange, weird or whatever other label some might attach to them simply because they don't understand (and in some cases, perhaps don't even want to understand) these kids.

Yes there are times when it can be utterly frustrating to cope with either of them much less both of them. But then too, can't it also be equally frustrating in dealing with any six-year-old or four-year-old too? The main difference between Maya and Kurt and other children is the way they each process things differently from other kids the same age as they are. It isn't that they can't do the same things but they do need more assistance in many aspects to learn how to do things we tend to take for granted in children and the way they learn.

They are active kids -boy, are they ever! They are vocal and yes, sometimes the volume of their voice can be a bit overwhelming -to us, and especially to those who are unaware that they have issues.

In so many aspects though they are exactly like other children of the same age group and do the same things too which can also create problems at times because of various behavior patterns. It can be hard, can be confusing for us to determine if a behavior set one or both may exhibit is "normal behavior" or is it something coming through from the autism. Therefore, there are times when the type of discipline one must administer with them has to be chosen carefully so they can understand then too that some behaviors are not acceptable. It can be really hard then because if you believe all their actions are totally stemming from the autism factor and then, as a result, you don't discipline them for poor behaviors, you run the risk of allowing them way too much latitude and laxity then which could result in behaviors being continued that others would then interpret as them simply being spoiled little brats. Hard choices there at times to find ways to get the point across that some behaviors simply will not be tolerated and getting that point across is probably the hardest one for us to deal with most of the time.

As a result, we try to put the same rules and regulations on them as we would on any other child of the same age. It is a challenge to find ways to get that point across but it is something that is important not just for us in helping them but for them, in learning how best to ultimately help themselves too.

I realize too that as a family unit, we are very fortunate in that they are both quite high functioning and that there are others with autistic children who aren't in the same classification there. But then too, each of us -regardless of whether a child (or adult) is on the spectrum or not -is still an individual who has the right to learn by whatever method works the best for each person and to be treated with respect in the learning process.

The other day, Kurtis had come to me when he was ready for bed but not quite ready to settle down and wanted me to hold him, to snuggle and cuddle him. When he did that, it set off a bit of sibling rivalry then with Maya as she too then wanted the same treatment from Gram.

This picture is what happened then and how we -or rather I -ended up resolving that issue.

Would you have reacted any differently?

Or is there anything any better than having your grandchildren want to curl up in your lap and be hugged, cuddled, snuggled and shown that way how much they are loved -equally?

1 comment:

Smalltown RN said...

Oh Jeni...what a wonderful and informative post about such an important topic. To many of us don't know enough about autism and it's about time we started to learn.

Like any learning issue it seems to take the system a long time to agree with what you as family memebers see....As parents we know when there is something wrong with our children.

Not to detract from your topic, but my youngest daughter was diagnosed with a learning disability. I knew this right from the get go...being my third I had two other children I could gauge her learning curve to. By the time she was to go into kindergarden, she couldn't spell her name....letters were printed backwards and she didn't have an understanding of alphabet. After much dialogue with the shcool and insisting she be tested finally by grade 4 she had the official test.

This school couldn't provide for her...she is dyslexic....her father and I sent her to a private school where they worked with her one on one and in small right back to the basics of the English lanuage and how we learn....their teaching methods were geared towards how the child learnt. By the end of her time at that school she stood up in front of a room of over 200 people and read a speech she had written about her time and experience at that school.

She is now graduating from high school, and registered for college.

She isn't stupid at all....she just learns differently.....

Great post Jeni....

Happy Easter to you!