I don't understand....

So far, the toughest hurdle for Connor has been speech.  He KNOWS he is saying something to us yet, we have not clue what it is and cannot understand him.  All of his words sound the same.  I think he has about 6-7 words which are clear and we are able to understand.  He has a phonetics problem where he hears the words we say clearly but for some reason the brain does not send the message to the mouth correctly.  He either says the word back words or might only say half of the word.  Some words he hears completely differently.
We tell him LOVE YOU and is response is "bot boo"(or something of that nature).  The good thing for us is that he has all of the correct syllables and he is saying his own words in the same fashion we would say ours.
It is going to be a long road of learning how to talk.
I have decided to start making charts for Connor.  It is too difficult for him to ask us something.  He knows what he wants but we cant quite understand him yet.  I will be taking pictures of basic things and when he wants or needs something I will go ahead and ask him what it is.  This way I can help him learn "our" language a little better and can understand "his" language at the same time.

This one hits home...

A friend of mine sent me this poem.  It had me in tears.  It is a beautiful poem about raising a child with special needs.

"Welcome to Holland"

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

A new comfort friend

Connor has always had the need to put things in his mouth.  He is delayed and because of that is still in the "everything goes in the mouth" stage.  He is old enough for us to let him know that we don't put toys in our mouths but recently it has become some sort of a necessity for him.
It is now to the point that he gets very frustrated with one thing or another and either bites himself or the object he has become frustrated with.  He has also proceeded to start sucking and clamping down on just about every toy and "baby" he has.
I finally mentioned it to his occupational therapist today and she suggested a vibrating teething ringthat she uses for some of her other patients that have sensory issues.  I honestly thought it was silly.  Connor is two years old and has all of his teeth.  What good would a little teething star do for his need to put everything in his mouth.

BOY WAS I WRONG.  This thing is a life saver and the boy just adores it.  He has not let go of it and has not ripped a single thread out of his "lovey" (a new mouthing habit he recently started).
He got frustrated and upset a few moments ago because he had a piece of thread on his foot and he started to bite his shirt and I told him to breathe and bite his star.  He sat there for quite a few minutes holding the vibrating star in his mouth and soon all was fine with him.  I am sure I am starting another bad habit but now he can play with toys and not mouth them and not beat himself up so badly.

Thank you learning curve for your teething star!!!

Happy Mothers Day

Today has been wonderful.  Connor has been well behaved and happy all day.  We went and enjoyed a wonderful lunch with my sister, nieces and my mom.  The food was horrible but the company was more than I could have asked for.  My niece Emma is in love with Connor and I was so happy to enjoy watching them interact with each other (Emma is 18 months older than Connor).  He just loves the attention he gets from her.I am now at home playing with photoshop and cant wait to eat my grilled salami and cheese sandwiches I have requested Eric to make me for dinner.

Enjoy and happy mother's day to all you wonderful mommies out there.

A little list of accomplishments...

My little boy is just amazing. He has come so far and in honor of him being my favorite person; I have decided to make a list of his recent accomplishments.

1.began walking in March 2010 and began taking steps backwards in May 2010

2.starting to show interest in using a spoon (a huge accomplishment considering his hands and arms don't turn and flex as easily as ours)

3.beginning to say some words. I think we are up to about 7 or 8 words now and he tries to make new sounds daily.

4.when I ask him to sing me a song he (in a very adorable high pitch voice) says DA DA DA (la la la).

5.he will be fitted for braces for his legs next week which will in turn straighten him and improve his balance.

6.CRAYONS! he finally is interested and can mark a paper with out my help.

7.His cast came off last week and he is now applying pressure to his left arm and has stop babying it.

I am sure the list can go on forever but since he is now crying for my attention I shall end it here.

We sure have come a long way.

Where to start?

It has been far to long since I have updated about this life I am leading.

Lets see...

Connor saw a heart doctor who determined he has an innocent heart murmur and his heart happens to be in top notch condition. Thank goodness. His chromosome deletion did not give him any heart conditions.

Shortly after that, he turned the big TWO. I cant believe my special little man is two years old.

We had a nice family party and then went to Disneyland to continue our celebration for a few days.

We returned from Disneyland and Eric returned to work. I was still on vacation for a few more days.

Four days into his third year on Earth, Connor stood up, fell down and broke his arm.

We were not sure what was going on at first as it did not look broken to us. We took him the the ER the next morning and well, here we sit now with a casted arm. He is miserable. He wants the cast "UP" which is off in Connor speak. He is constantly falling due to his balance being off and now his face is a black and blue map. He hits himself in his sleep with hit and falls on it daily. I feel for him. He never complains.

Thank goodness it will heal in three short weeks and be good as new in a few months.

What will happen next?

Let the fun begin...

Connor is officially walking now. I am amazed how fast it happened. He was taking no more than 5-9 steps a few days ago before falling and now I lose count as to how many he is taking. He is so determined. I am more proud of him than I can put into words. He is beating so many odds. I sort of knew he would walk at some point and cant believe it happened so fast.
He is making so much progress in speech as well. We were told he might talk which of course is scary to think that there is a possibility he might not but, he is babbling more and more and making sounds that can be words. He is simply amazing.
He has taught me more in two short years than I have learned in my 32 years here on Earth.
Connor can be a lesson to us all. He is determined, patient, happy and content in any situation he is given. I complain every time I take him to therapy but, he never makes a peep. He smiles, flirts and does what they tell him to do.
I am more than honored to travel on this road of life with him and thank God every day that he chose Eric and I to be his parents and learn from him.
Connor is my heart.
Let the fun of a walking toddler begin...