Wednesday, April 11, 2007

Like your heart with two legs....

To any of those of you have read me, I am sure you are aware of my Sir Rowland....

Sir Rowland is 5.

Sir Rowland was my fussy baby, my no napper, my baby who read at 18 months. Not exagerating, the child could sight read signs. EXIT, STOP etc. He could identify colors, etc. He new his alphabet and numbers early. They call it hyperlexic.

However with tht came, the lack of any real reciprical converstion, trouble with his Activities of Daily Living, melt downs.....and more melt downs. He could read, before he would say I love you....

There is really too much to put down, too many indicators that Sir Rowland was Sir Rowland....

And I kept the Dr. updated, and I watched him skip picture books, and blocks, and go directly to golf, and an unhealthy obsession with carrying money or playing cards, he had to read EVERY sign we passed. His favorite show when he was an infant was Price is Right. He would memorize the schematic of a house, a cemetary, a town after one visit. He can still tell me how to get to his Aunt and Uncles house in Omaha after being there a handful of times.

He knows t-cells are part of the immune system, and is intrigued by inertia.

He will describe things that are bumpy as stucatto.

He is an amazing child, our little guy.

However there is hand flapping, and when frustrated and anxious he can some times become self injurous.

He will repeat sounds and words over and over because he likes the way they sound. He has trouble with too much sound, too much light, too much smell. And forget if you have all 3. some of you will recall our last trip to the circus.

I will say this, Sir Rowland has made huge leaps this year. HUGE. Melt downs are less the OCD behavior has improved by at least 75%.

He has taught himself to write his letters. He can say thank you in Chinese.

He can have limited recipricol conversation.

He is 5 now.......

We can go to the nursery at the gym!! We were unable to do this for 3 years.

We can go to the library for story time.

He will now wear a band aid.

He is attending church 3 days a week for an hour.

We can leave the house.

This past 5 years has been very hard on Mom the most. And I am unsure why......

This morning, I spent the day trying to clarify the situation at the Church Academy. You see when he hit the kid at choir a couple of weeks ago, a red flag went up. I understand this....

I do not want my child interferring with others learning. I want him to like other children, and to learn, and follow RULES (which is a problem for him).

So I spent the morning on the phone, chatting with the public school, and with his Dr. and with a Mother in town who has 2 boys with Asperger's syndrome. And I prayed and I prayed....and I prayed some more.

and my heart has been heavy for a week.....

He is five, and he is frail, and I need to let him out of this nest I have made. A private nest......where he has been safe and nurtured, and accepted.

And it makes my heart hurt. It makes tears FLOW SO HARD AND FAST that there is no comfort in them.

And Dad is gone.

And my little guy, is wonderful. When he loves you, he loves you......BIGGER than you have ever been loved.

But when he is frustrated, or overstimulated, or scared, it is frightening...even to his Mother, so how will a stranger react?

And he is five, and I do not think I have EVER been more frightened of anything in my life.

I also know I am lucky to be blessed with my 2 healthy and active children.

I have seen my small cousins die, and what it did to my Aunt.

And I saw my Sister work harder than anyone being mainstreamed with hydrocephalus during a time when the Drs. were all suggesting she be intitutionalized.

And I saw my Brother born with sacrococygealtetroma. I watched surgeries, and warnings of permanent brain damage, and paralization. I watched my parents....spend years in and out of hospitals. I watched them make friends with those other familites they met at the Drs. and hospitals. I have seen what a life of illness can do.

And I became a nurse.

I am not sure what I learned as I sit here writing this.

I know I am blessed.....

But boy it hurts like hell today.

They are going to give him a chance at the academy.

And we could use your prayers today...


Anonymous said...

I hope everything went wonderfully today!

Anonymous said...

My prayers were said before I wrote this... **hugs**

Anonymous said...

Hold Fast to your faith, I have a god-daughter who is mentally retarded and has CP, since being 'Adopted' by her she has made remarkable progress in her life, so will Sir "R".
You are in this for the long haul and he will be fine
if yer ever down in Hot Springs , Hollar!

David M said...

You have them!