Jabuti

Precious Isabella is now in the third grade.  Although she is still in a contained autism classroom, she takes her specials and eats lunch with the general education children.

The third and fourth graders put on a wonderful play from a book called “Jabuti the Tortoise:  A Trickster Tale from the Amazon” by Gerald McDermott.   Their music teacher wrote the music and they spent three months learning to recite, play act, and dance.

It was delightful from the moment we arrived.  A number of children greeted Isabella; she is one of them.  This is such an answer to prayer!

When the children were on stage, Bells was just as engaged as the other children.  More so, actually, as she was waving to her mom throughout!

The reason we stay in a town with especially high rents is because Isabella gets a great education.  I wish this was true for all people on the spectrum.

Without a Leg to Stand on…But With Hope

Because of complications of diabetes, my beloved mother-in-love needed to have the lower part of one leg amputated. (Sorry if the title offends…this is not my intention and I am not making light of this).

When Mom died this past January, my daughter told my granddaughter that Grandma is in heaven, with two legs, bouncing around in a field of flowers.

This is how my Isabella interpreted this tableau:

I lost the picture!

(almost) Unbearable

When we decide to have children, we think of precious newborns, inquisitive toddlers, cuteness and innocence. What we don’t think of is an emerging human being with opinions and weaknesses, rebellion and pain.

Seeing one of my children or my granddaughter in pain can do me in. There are times I think it is unbearable. Even prayer and reading the Word of God can have little effect…or so I think…

Last week, there was a night I thought I was going to break, literally. A number of years ago, I was hospitalized (my choice) for depression and anxiety but have grown enough in knowledge and faith to be able to stand up to the demons that plague me.

My precious granddaughter has been going through a rough time and I became so upset that I felt like nothing could bring me strength. People are praying about the situation and there is comfort in that but I was about to crack.

For several months, I have been writing out my prayers so I went to my prayer spot and cried out my pain and the injustice of what is happening to my girl. I reminded God of His promises to those who love Him and trust Him. I laid it all on His broad, broad shoulders.

And I slept well for the first time in a very long time.

Tragedy and Triumph

My eight year old granddaughter who has autism. She is the light of my life.

When a family first gets the diagnosis of autism, they often go through a mourning period. To help, there are wise writers like the author of Welcome to Holland, Emily Perl Kingsley.

This adventure has been difficult and delightful, tragic and triumphant, humbling and holy.

God gives us beauty from ashes. My beautiful girl will always triumph because she is wonderfully made, not a mistake, perfect in His eyes and mine.

treelightingbooboo

A Blog Dedicated to…

There are some amazing autism blogs out there. One that I read on a regular basis is Diary of a Mom. Jess has helped me understand my granddaughter in ways I may have never thought of through sharing her insights into her family’s journey in Autismville.

Another is Autism in a Word. Jeneil takes us through a journey of hope and faith. She fills my heart and my soul.

I was finally able to get my daughter to read one of Jess’ entries and I do believe she is hooked. She suggested I write a blog about autism from a grandparents’ perspective. Duh! What does she think I have been doing all these years?! To write about autism exclusively is not something I believe I could do, though. There is no shortage of material but I am not versed enough in the things that would help others the way the other blogs do.

There is not one person who has been following all these years who doesn’t know that my Isabella is my heart. She is the source of so much joy and love. We love each other unconditionally and I don’t see that changing.

Bogging has taken a back seat since facebook but, once again, I will try to get back into it.

Many blessings to all in the new year. g

Life Goes On

The last few weeks have flashed by in a whirlwind.

The Girl and Bells moved into a new place close by and we helped with that. Exhausting for all involved and we are hoping for the best.

Establishing Isabella in her new schedule at school has been difficult. Instead of being in the contained classroom all day, she has been entering school with the “neuro-typical” (N.T.) class (e.g. regular kindergarten class) and doing all her specials (library, phys. ed., music, etc.) with that class whilst doing her academics in the contained (autism) classroom. Her teacher from last year and the child study team leader felt she was ready for this. However, our nearly always happy girl has shown anxiety like never before.

Fortunately, her child study team leader saw her crying when she was leaving the gym one day and Bells was able to express that it was too noisy and too many kids and whatever else was bothering her. As a result, the team leader was able to ascertain which specials Bells felt comfortable. Things are going a bit better now. Maybe one more week will show a greater change. I want my happy girl back.<ins datetime=”2011-10-16T22:36:47+00:00″>

Yesterday, I gave Himself the day off and went to a wedding and reception with some friends. You know, I just might make a habit of this! We have gone to so many wedding receptions because of the number of children his friends have that it tends to get old. He is older than I am and some of MY friends’ children are of marrying age now. If he isn’t friends as a couple with my friends I will probably go the weddings by myself!

With all that has been going on, I am beat. When you don’t give in to the fatique of fibromyalgia, it will bite you in the bum. Today has been a true day of rest as in staying in bed until mid afternoon and doing no work at all. It’s a crazy balancing act but at least I am not experiencing a lot of pain. Yea! (That was last week when I didn’t give in! Flat on my back and sleeping for a day but that’s okay.)

All in all, life hasn’t been all that bad. Our bellies are full, we have clothing on our backs, a roof over our heads and a loving Father in heaven who meets all our needs.

Blessings to all, g

Oy, how did that Happen?

My day was planned out perfectly: bring Isabella to school, stop at the library, weight watchers meeting, trip to an outlet area for new “unmentionables” and maybe a new dress for our niece’s wedding, maybe a trip to Trader Joe’s and then, blessedly, a nap!

But nooooooo! As I pulled into the drop off area at school, I noticed I was the only one there. The district didn’t use all its snow days so we have a four day Memorial Day weekend. No one told me! Isabella was confused but dealt with it. “Is school finished?” “For this week it is, honey.”

After a week of congestion and coughing (allergies?), Bells could have slept in this morning and this upset me. I hate to wake her up when she is in a deep sleep. That might have bothered me more than having my plans upset.

We went to the library, one of Bells favorite places, and then to weigh in but not stay for the meeting (another pound and a bit – just over 21 pounds!) and then we went to see great grandma. This was a good thing as she adores her little pigeon (pah-jink-ah in Slavish) and she is pretty fond of me, too. We all packed into my car and went to the outlets together. Isabella made out the best with sandals, a swim suit and a dress. I got two tops and a skirt – only $10 each! -and I got a lovely top for my daughter, too. Nothing for the wedding and no undergarments.

We had a bite to eat in the food court and went back to great grandma’s where we waited for himself. He ate the gyro we brought back for him and then we drove up to where The Girl works so Bells could go swimming.

Are you tired yet? I am! Himself went home and I went to get some stuffed cupcakes and then home to cook. Ugh.

Since dinner, I have, basically, been sitting in my recliner fooling around on the netbook and “watching” mostly mindless tv.

Now, my perfectly planned day is another example of God’s sense of humor. “Man plans and God laughs?” Had everything gone according to plan I still would have taken Isabella by her mom but then great grandma wouldn’t have had her usual Friday visit. My mother-in-law adores Isabella. My girl brings great joy to her and this was a hard week because it would have been my father-in-law’s birthday. I am so happy we were able to bring joy to Mom

As for tomorrow, I am afraid to make plans! Truthfully, all I want is to sleep as long as possible and stay in bed until I am good and ready to get up! If someone gets in the way of that they had better look out. If Mama ain’t happy ain’t nobody happy!

To my American friends, let’s not forget the reason for Memorial Day even whilst we enjoy our bbq’s and whatnot.

blessings, g

Mother’s Day and Such

It is just after 10:30 PM this Mother’s Day of 2011. It was a good day.

Himself and I grabbed a bite last night – although we had to leave because the place we chose was so crowded I got overwhelmed and we had to take the meal to go. It was better at home anyway!

After church, I started to prepare the meal I am going to serve my parents when they visit tomorrow. We so rarely get to see each other and I want to have something special for them. Sunday afternoons are usually for napping but we had to go to Himself’s mom’s house. It was so good to see everyone there.

Isabella, at age five, is the oldest of the great-grandchildren. Her cousin Giuliana is just thirteen months old and cousin Tyler is just four weeks old. My poor Bells was so upset at not being the center of attention. When I picked up Tyler, the look on my girl’s face was like I had put a knife through her heart.

We sometimes expect to be able to reason with our girl as we would an NT (neuro-typical) child but often we can’t. What is going on in her mind; her intelligent, wonderful, complex mind? How does she process what she sees and hears? Is she acting like a brat or like a hurt child unable to understand that our love for other children will never take away from our love for her?

There is a very loaded question in the autism community: if you could take away your child’s autism, would you? Some say a resounding, “No!” as if you are insulting their child. Those who are on the spectrum and can answer for themselves often say no.

For the parents and families of people with autism who can not communicate or are afflicted with anxiety and frustration, there is often a resounding, “Yes!”

Would I take away Isabella’s autism if I could? Get back to me in a few years when she is no longer an adorable five year old; when other kids can hurt her more than they can now; when she realizes she is “different.” I’ll let you know then.

For now, I will love her and hug her and joyfully swim in the wonder of her hugs and kisses and her requests to sit with me, sitting so closely I can’t tell where she begins and I end. I will hope that she never stops calling me Booboo replacing this special name with the generic names grandmothers go by because Booboo makes me feel special. I will walk to raise money to help others on the spectrum. I will advocate and go to meetings at school and support my daughter as best I can on this journey.

I am not a saint. I am a tired, worn out mom and grandmother not always trying my best but doing what I can when I can. There are times when I just sit and play on my netbook or watch tv and knit. I give myself permission to be lazy whenever possible. Thankfully, my best is good enough for Bells. And that is what matters.

Dribs and Drabs

It’s hard to come up with a title for a post when I have no clue what I am going to write about so I will leave that until I finish.

After meeting some wonderfully interesting new people through the Five Minutes for Moms blog party, I find that not writing seems lame. If all the other busy people I visit can find time to write why can’t I?

It is not really about time. It is the fear of boring people to tears. Hmmm…boring to tears…what causes that…yawning? I digress…I like to digress…

Life in my little corner of the great Atlantic northeast is rarely boring. Three to four days a week I take my grandbaby, Isabella (Bells or Boo to me most of the time) to school. Morning is not my favorite time of day so this is an effort. After that, if my fms (fibromyalgia) isn’t kicking my bum causing me to have to go back to bed for a couple of hours, I try to get some work done. I don’t often succeed. You see, I have an aversion to housework. I say it is because I am a perfectionist. If I can’t do it perfectly, why do it at all?!

I am the team captain for our Autism Speaks walk next month. By this time last year, I had a team of about fifteen and had raised hundreds of dollars. My team is only around six people right now and I haven’t even raised $200. This is very discouraging.

~heavy sigh~

Quite a bit of my time has been spent helping out mother-in-love. Yes, you read that right. I love my mother-in-law. She is 85 and in poor health and I am the only one in the area who doesn’t have a full-time job. I don’t mind. It is a labor of love.

Too much time is spent on my netbook. ’nuff said about that.

For the last few months, I have been enjoying a study of the Old Testament that a friend teaches and have started a study of the gospel of John with another friend. It has been quite some time since I have been in a Bible study group and this is a great development.

My eyes are tearing up. Bored to tears….I won’t put you through any more mediocrity. Just know that I want to stay in your lives and will keep up as best I can.

blessings, g

Catching Up

Well, daylight savings gave us an extra hour of light today. It was nice but what a drag for the moms trying to get their kids to go to bed on time; especially special needs kids who have issues with melatonin. Oy.

The annual walk for Autism Speaks is coming up soon. I am overwhelmed with even thinking about putting it all together again: sponsors, contributors, walkers, t-shirts – ugh! Will anyone else step up to be Team Isabella’s team leader? Nah ah. Double oy.

My mother-in-love is not doing well. Having my father-in-law around until he was nearly 95 makes me think Mom’s 85 years is young but that is not the truth. Congestive heart failure and bad arthritis make her so uncomfortable. We all want her around for as long as possible but have to accept reality; life is frail. Oy, oy, oy. At least my parents are in great health. Phew.

I am pleased to report that Isabella is still progressing more than she is regressing. She actually recited the eleven months of the year whilst clapping! (She left out November.) It is thrilling to see that she is learning things that neurotypical children her age are learning. We had a phone conversation earlier that made more sense than any other we have ever had. She was able to relate to the fact that tomorrow is a school day. Me: “Tomorrow is Monday, Boo.” Bells: “I know that.” Hooray!

Yesterday was about the 28th year (less the three they moved out of state) I celebrated St. Patrick’s Day with my bff and her husband. The corned beef, cabbage, potatoes and soda bread were good but the company was great. I have been blessed with a number of people I can call “friend.” So many of them are around for only a season. However, L is the one who I know will always be in my life. Another hooray!

Living in this part of the great Atlantic northeast is very expensive. Himself wants us to make plans to move to a state we can afford to live in. Leaving my grandbaby behind is not an option as far as I am concerned. The Girl doesn’t want to move. What to do? Hope God gives us perfect wisdom on this. It’s so hard.

Well, that’s about it for now. What’s up in your life?

blessings, g