Thursday, November 08, 2007

Am I Thankful For This?

I remember it well, the day my granddaughter was born. We had thought she might arrive a week earlier -mainly because her mother woke me and her dad up quite suddenly when she fell down the steps coming down from the upstairs of the house early (about 6 a.m.) the Saturday a week before. I heard this terrible clatter and knew immediately it was caused from someone falling down the steps but I thought it was Katie, the step-granddaughter. Bill -my son-in-law and I both flew over to the landing -so much for picking on him and saying he could sleep through an 8.0 earthquake on the Richter Scale because that noise shook him awake immediately.

Mandy was lying on the floor, curled in a bit of a ball and crying. No wonder either as her foot, we learned, had slid on the very top step and she had bounced her way down the entire length of the staircase. They called her doctor immediately, explained what had happened and from that, off they went to the emergency room at Dubois Hospital for her to be fully checked out, observed for a while with the baby being monitored at the same time. No labor started that day though. However, there was a sonogram done on the baby and the technician had remarked that it could be seen the what sex the baby was and Mandy was asked if she knew or if she wanted to know. Up until then, she had said she didn't want to know in advance what she was having but she and Bill were fairly convinced this child was going to be a boy and to confirm (or deny) those expectations, Mandy had said "Sure, let me know." The technician had then told her it was going to be a little girl but she never told Bill or me or anyone else that week in between that scare and Maya's birth.

The following Saturday morning, Mandy had said she had some back pains. By noon or so, she was starting to have contractions and began timing them. Finally around 4 p.m. or so, she and Bill left to go to the hospital. Before they actually left town though, she made him stop up at Jim and Charmaine's Restaurant and they had to go in so she could get a cheeseburger to go! No way was she going to go over to the hospital, be admitted and go without food for any longer than she absolutely had to do.

That evening, I got some periodic phone calls from Mandy's best friend, Jen, keeping me abreast of what progress was being made there. About 9 p.m., Jen called and said that things were getting much closer, could be any time now. And finally, close to 10:30 that night, Jen called to tell me my little granddaughter had finally arrived - all 22 inches and 7 pounds 1 1/2 ounces of her! The name Mandy and Bill had decided on -enroute to the hospital -just in case it turned out to be a girl - was Maya Kirsten. Mandy wanted a name to reflect the Swedish side of our ethnicity and although my Great-grandmother's name was spelled "Maja" but pronounced Maya, Mandy decided to go with the pronunciation but not the Swedish spelling so this little one thus was named after my great-grandmother -her great-great-great-grandmother who had come here back in 1881 with five young children to reunite with her husband who had been here then for almost a year - working in the coal mines in a long-since defunct coal mining town down in Lycoming County, called McIntyre.

The next day, I drove over to the hospital to meet my first granddaughter. It was a bit of momentous occasion for me in that it was the first time since mid-June that I had driven that far. I'd had colo-rectal surgery back in June to remove a malignant tumor and three weeks after the surgery, developed major back problems that had kept me from doing much of anything the rest of the summer and early fall. I was still getting physical therapy at that time but finally, my back was in good enough shape that I could safely sit for an hour long trip -and even drive that far as well!

I remember so well my first glimpse of this tiny little girl too. Mandy was holding her when I came in and she turned her over to me saying "Here's your granddaughter, Mom." I'm not normally one who believes in premonitions or things like that, but standing there, cuddling this little baby, with her eyes searching my face, there was something that just seemed to speak to me, telling me to be very vigilant with this child as she was more special than we knew. I vowed silently to Maya that Gram would do all she could to see to it that she had the best life we all could possibly provide to her.

Little did I know that perhaps that whole scenario was really a premonition though of things ahead.

She was a beautiful baby - oh heck, she's a beautiful little girl now at four years of age! But really, she was soooo pretty. And as she began to grow, she just seemed to get even prettier.

But by the time she was about 7-8 months old, I saw things that set of tiny alarm buttons within me but at that time, I said nothing about them - just chalked them up then as something coming from an overly indulgent grandparent perhaps. That is, until my older daughter Carrie remarked to me around then too that she was concerned as Maya didn't seem to want to make eye contact with anyone. Actually, she resisted doing that, tooth and nail. Carrie asked if I had noticed that and I said yes, I had and that it worried me too.

Otherwise though, Maya seemed to be developing normally but by the time she was a year, Carrie and I both noticed she wasn't doing other things we thought were normal for a child of 12 months or so - she didn't point to anyone or anything; didn't try to wave, didn't reach for anyone, didn't seem particularly interested in any thing other than one particular blanket and her pacifier. Nothing but those two items held her attention at all. Then, when she began to walk, we both noticed she was also a "toe-walker" although I had heard someplace that the lack of eye contact and toe walking could be considered possible markers for Autism, I didn't pay that much attention to the walking issues because Mandy had been a toe-walker and so was the children's grandmother - my ex-mother-in-law - and they were all fine.

At Maya's 15-month checkup, I remember kind of asking somewhat leading questions of the pediatrician about my concerns but trying to word them in a way so as not to alarm or frighten Mandy at the same time. The doctor seemed to feel she was developing fine but I still was not quite convinced. But at her 18-month checkup, when I asked more questions once again, this time the doctor thought perhaps she might have a hearing problem and referred her to a specialist for hearing tests. At that time too though, she also referred us to a local agency that works with infants, toddlers and small children who have various problems - Cen-Clear - located in our county. They sent a team out to the house to test Maya for developmental issues and it was then that we were initially told that she had several developmental delays. The hearing test though had not yet been done and they had said the test scores might change if she was found to have any hearing problems. About two weeks later, the hearing tests were administered and the doctor told us she had no hearing issues that he could detect. So the initial testing evaluations stood then as developmental delays. I had asked the members of the test team if there was any possibility she could be autistic and they had said then that they were not qualified to do evaluations of that nature but that with developmental delays such as hers, there was always a possibility that she may be autistic.

Maya was then assigned a behavior/play therapist to work with her, to try to get her accustomed to doing what is considered "appropriate" play along with a speech therapist to try to help her develop the ability to speak and a vocabulary. At the same time, I began trying to research via the internet all I could about autism as well as finding ways to broach that subject from time to time with Mandy. At that time, Mandy did not want anyone to even think about Autism much less show her information about it or discuss it. I think she was actually too frightened at that time from what little she'd heard about Autism and it was more than she could handle at that time. Finally though, I did tell her that since there was always the possibility Maya would be evaluated and diagnosed Autistic that it would be to her benefit to read up on that now and if it turned out Maya wasn't, then having done a lot of reading, studying on the subject could also be beneficial should she ever be able to go back to college and continue on towards a degree in Early Childhood Development studies. With that idea in mind, she finally did begin to read things about the disorder and started to realize more and more that it was looking to her as it had to me and to her older sister that Maya very likely was going to be diagnosed as autistic.

For 22 months, we had these two therapists coming to the house once a week. It had taken from June of 2005 until February of 2006 though before we actually started to see real progress with Maya - she was beginning to play appropriately with many of her toys and finally, she had said her first word too - in response to our questions to her of how old she was - as she began to respond by telling us "TCHEW!" meaning "Two."

By June of 2006, she started showing even faster progress - counting, picking upon numbers beyond what we'd been repeating to her via Sesame Street and the "Count" scenes on that program. Then there was the magnetic alphabet letters (and numbers too) that Mandy got and had on the refrigerator which she started to play with. Before long, she was identifying each letter of the alphabet and not only could she rattle off numbers but she could identify them on sight as well. THe vocabulary was coming but not at any great speed though.

Last fall and over the winter, her progress was really excellent - words -new words coming about very quickly and she rapidly was becoming quite the little mimic too.

We also saw some other changes take place that worried us too though. From the time Maya was two weeks old, Mandy and I had always taken her to church with us so when she learned to walk and could maneuver around the pews, we still continued to take her and she was fine with that. She showed no fear of the church, the service, the other parishioners there - no withdrawal around strange people, no fear of the sounds, etc. That is until May of 2006 when we went to an evening service one week and she began to fuss as we pulled into the parking lot. We had calmed her enough to get her to start walking into the church but as soon as she set foot inside the building, she went into a very massive meltdown - a VERY LOUD massive meltdown that with the opening shriek she let out, I thought one older lady standing near us was going to jump completely out of her skin. And, as happens with kids who have this disorder, when they go into meltdown phase, there isn't all that much one can do in terms of disciplining the child that will get them to return to be peaceful quickly or anything. Mandy ended up leaving me at the church with the baby while she came home, left Maya with her dad and came back out an hour later to pick Kurtis and me up to take us home.

Two months later, when we had the baby baptized was probably the worst meltdown we've dealt with - in -public anyway, with Maya as we HAD to take her to church with us for that service and she began to cry, scream, kick and generally rant and carry on as soon as the bell rang and it continued, full strength too, for the entire length of the service - well over an hour of steady sobbing while I sat in the narthex with her, rocking her, trying to quiet and soothe her, all to no avail. After that episode, we didn't even think of trying to take her to church until just before Christmas when we went to a dinner that was followed by an evening program in honor of the Swedish patron saint, St. Lucia. She actually did fairly well with that so in February, we ventured out again to an evening dinner at church where she did really well -but we still weren't quite ready to take the leap for a regular church service just yet. That came about in June when her big sister, Kate and her best friend, Erin, both had to be present for a special youth group service and we thought maybe with the two older girls there, it would be a drawing card for Maya and a means to help her begin to put this fear -whatever was causing it we still have no clue -behind her. And it did work that way. Since then, we've taken her to several services, including some after church dinners too and each time she has done better and better.

This past April though, we finally had a psychologist who came to the house to evaluate Maya and he confirmed to us then that she definitely is on the autism spectrum - pdd-nos, high functioning. He recommended that we prepare her to go to the pre-school program starting this fall for two years and then she would transition into the kindergarten program at our local school. It was his opinion that her biggest drawback right now pertains to her social skills and we definitely agreed with his idea about that!

Since September 4th now, Maya has been attending a preschool program in Clearfield - about 22 miles from here. The Cen-Clear agency sends a mini-van here four days a week to pick her up and take her to school and bring her back home. She is there from 9:30 a.m. until 2:30 p.m., Tuesday thru Friday and she LOVES it! She absolutely LOVES going to school, being with the six other children in her group, the teacher, the two aides and she is doing just great with the things they are teaching the kids there too! Her vocabulary is increasing really quickly now, as is her comprehension of many things too. No, her behavior is far from perfect some times and no, she hasn't learned everything about socialization either but she is learning, oh - for sure - she is learning!

And along with her, we too are learning more and more every day too.

There are times when she can be very defiant, very, very stubborn - she picked up that trait, in spades, from every possible branch of her genetic tree! And dealing with her on those occasions can be difficult, very frustrating at times. But it has also taught me a lot of things -the highest one being patience - something I've never been known to have in great quantities but from being with her, learning more ways to work with her, it is something I have seen developing more and more within me.

Some folks, when they learn Maya is autistic, become very sorrowful, apologetic to us, sympathy abounds then it seems as they look at her and make little comments about how sweet, how cute, how pretty, etc., she is and isn't it just a shame she is autistic.

But you know, I don't feel that way about this at all!

To me, her being diagnosed with autism, which is an incurable, life-long disorder, is no different in essence than had she been diagnosed with juvenile diabetes. You learn what works, what doesn't, you learn ways to keep a more set routine for her to keep her as meltdown free as possible, and you still love the child -if anything - all that much more because you know just how special that child really is!

You learn to appreciate the smallest things the child has learned to do too. You learn to turn a deaf ear and a blind eye to things you wouldn't normally be doing if this child did not have this disorder as well.

But most of all you develop so much more empathy and above all, love, joy and excitement over being a part of this person's development and life.

So, is Autism a good thing or a bad one? I would probably rather that she didn't have this going on in her life as it will make somethings a bit more difficult over the years for her, but overall, I've decided it is not a bad thing, not the ogre some people think it is, for sure and I just want to be able to be here as long as possible, to watch her grow in every way, learn to the best of her ability, and to see her embrace life completely as one who is equal to all other children in her age range.

So, for all of what autism has brought us, the good, the bad, the sometimes a bit ugly, I do have to say because it comes attached to my little Princess Maya, it is far from a bad thing and for all of it, I am, strange as it may seem to some, eternally grateful, thankful indeed because it is what sets Maya apart and defines her for the beautiful, intelligent, often also very funny, comical little imp she is who melts my heart with her smile.


terri said...

Beautiful story! With all there is to deal with in parenting, it seems that Maya is very lucky to have you so involved in her life.

Shelby said...

You are all lucky to have little Maya and she is lucky to have you all too :)

dr sardonicus said...

Sometimes our blessings come in the most unexpected ways. Like you, I would rather not see a child have to struggle with autism, but Maya has helped to bring you closer together as a family. As Maya continues to grow and learn, you will too.

captain lifecruiser said...

Well, with any child with any disorder it's a challenge, but that doesn't mean less love - sometimes even more love just because of that :-)

Patois said...

Such a darling granddaughter you have. How lucky you both are that you are in each other's lives. There are so many things that remind me of my daughter. Heart melting indeed.

This Eclectic Life said...

Yes, melting the heart. I'm so glad for you that there are many wonderful advancements in the medical field. Though everyone would wish that she was not autistic, Maya still has the opportunity to have a pretty wonderful life. Especially with a loving family like yours.
Thanks for sharing Maya with us.

Theresa said...

Hi Jeni, I am running behind, I'll have to catch up on your blogs when I get back from NY.

Minnesotablue said...

I agree with all the previous comments. Maya is surrounded by love and what a blessing she is to all of you

Minnesotablue said...

Hey there Jen: Thanks for your comments on my post. My goal with this blog thing is to be only half as good as you are!

Vic Grace said...

Beautiful post Jeni. I am going to check out what autism is. I had a cousin in the States who had an autistic son, it seems to me that he was rather a severe case, I did not realize there are degrees of the disorder. She is truly fortunate to be surrounded by so much love.

Keith said...

What a wonderful tribute to your sweet granddaughter. She is very lucky to have a loving and caring family around her. God bless Maya and may He watch over her and be with her throughout her life.

lattégirl said...

Everyone comes into our lives for a reason. This was a beautiful story of love and patience, Jeni. With such a family and devoted, smart Grams, how can the Little Princess not turn out just fine?

*wipes more tears away*

lattégirl said...

PS: Be sure to save all your "Drivel" data to CDs! When Maya's older, she'll surely be fascinated by these Captain's Logs straight from her early childhood!

SnoopMurph said...

Jeni-you could be writing about my son and I am so thankful that you have posted Maya's story. You have no idea how helpful it is read about other children's stories and seeing how much LOVE surrounds them! You begin to love what sets them apart.

Today, my son was walking through the airport, flapping his arms and yelling-happy to be off the plane and to have a bit of freedom. I was amazed how many people waved at him and said hello, probably because they thought he was saying hello. The flapping brought a ton of positive admiration (that and the luggage tag we attached to the beltloop on the back of his pants in case he wandered off!). I knew he was happy, even though he ignored all his admirers.

We are still working our way through the beginning of autism. The road does not seem like a dead end anymore.