A Change of Direction

Lately, James & I have been leaning towards Jacob attending mainstream Kindergarten and were very excited that he and Grace would, finally, be attending the same school together.

Well, that is not to be.

His present teacher called me for a conference and expressed her concern about Jake attending regular Kindergarten.  She does not think he is ready.  I won't lie.  This deeply saddened me.  Here I had been talking to Grace & Jake about their new school, even taking them there on the weekends to get them familiar with the lay of the land.  And now, it is not to be :(

I really wanted to tell his Teacher that she was wrong.  That he was ready.  But in my gut, I know that she is right.  He is not ready.

Academically, he is perfect!  He is scoring above his grade, but socially, he is behind.  Not far, but still behind.  In Kindergarten, it is required that you do as you are told.  If you are told to sit down and do your work, that is what you should be doing and the Teacher should not have to be reminding you of this task.  This is where the issue lies.  He is probably hitting this command at about 50%.  We still see this behavior at home, which makes it easier to accept her recommendation.

His current Teacher, Ms. C., wanted me to go and tour the school they are recommending.  It is what they call an 'SDC' (special day class).  Where there is a Teacher and four Aides to 10 kids vs, 1 Teacher and 1 Aide to 25 kids.  The individualized attention is so much more and will benefit him greatly.  The plan is to have him in this class, but during part of the day he will be mainstreamed into the general Kindergarten class so that he can see what is expected of him and be ready to rock 'n roll when the time comes!  The goal is that by the time 1st grade rolls around, he will be ready to attend 1st grade in a general session.

So this morning, I met the school Psychologist at the new school and was more than pleasantly surprised at the class.  The Teacher, Ms. K., is a woman that has the most calm way about her.  I was there for a good 35mins and she had those kids listening and participating without raising her voice in the slightest!!  Heck..I need parenting classes from her!  She had them saying the Pledge of Allegiance, counting the days that had past of the school year in ten's, she even had them doing yoga!  So cute to see the little ones in the doggie down pose ;)

Now, my heart and soul feel great about him being at this school.  I know that he will succeed and soar!  I have no doubts in my Bubbi!

I attached some pics....well just because he is so stinkin' cute!  He was showing off his Mohawk :)

God gave me a miracle

I read this on a CaringBridge site and it hit me hard. 

As most of you know, Jacob has special needs and they have hinted that he has Asperger's Syndrome, but with early intervention, we have been able to turn around most of his delays.  

I never would have believed that he would be making the progress he is making.  When we started his therapy, there was talk that it was questionable that he would be able to start Kindergarten on time.  Now, it is a sure thing that he will go off to Kindergarten.  The only thing we are trying to figure out is if he will need to be in a Special Day Class.  In SDC they have aides that help kids with learning disabilities.  It gives those kids, just a little omph to help them prepare for being in a general class where he would be 1 of 25, vs. 1 of 6 which is what he is in now.

Anywho, at 2 years old, Jacob was still not talking and we weren't sure if he ever would.  We started intensive therapy at home, working 40hrs a week with his therapists on everything from speech therapy,occupational therapy and ABA therapy.  And after a few sessions we had THAT moment where he looked over at me and said "Mama".  I can't even find the deep words to articulate how it felt to hear him say that.  It was a true gift and one that was not taken for granted.  I know how hard he had worked to get those words out and never had I been soo proud of him. Tears immediately filled my eyes.  

Mom's that have special needs kids, will find solace in this.  I know I did.

~Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year thousands of mothers will give birth to a premature baby. Did you ever wonder how mothers of preemies are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son. Patron saint, Matthew. “Forest, Marjorie, daughter. Patron saint, Cecilia. “Rutledge, Carrie, twins. Patron saint... give her Gerard. He’s used to profanity.

Finally, He passes a name to an angel and smiles, “Give her a premature baby.” The angel is curious. “Why this one, God? She’s so happy.”

“Exactly, “ smiles God. “Could I give a premature baby a mother who does not know laughter? That would be cruel.”

“But does she have patience?” asks the angel. “I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it.

“I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make it live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps, “Selfishness? Is that a virtue?” God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child who comes in a less than perfect way. She doesn’t realize it yet, but she is to be envied.

“She will never take for granted a spoken word. She will never consider a step ordinary. When her child says ‘Mommy’ for the first time, she will be witness to a miracle and know it. When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, the pen poised in mid-air.

God smiles. “A mirror will suffice.”

~Author unknown

Great Expectations for Jake

Tomorrow is an important day in our household.

I have a meeting at Jake's school with his Speech Therapist, Occupational Therapist, and his teacher. This is the annual IEP meeting where they will tell me the strides he has made and where he still needs improvement.

Fingers crossed, they will tell me that they think he will be ready for Kindergarten next year. That has always been a possibility, that they will hold him back a year b/c socially he isn't ready. I'm honestly unsure myself if he is ready. I'm hoping another year, this his last year of intensive therapy, that he will be ready.

I probably wouldn't be THIS worried about it if he wasn't a twin. But what I fear is that they will hold him back and Grace will go on to Kindergarten on time. Then, forever, the stigma will be placed upon him. Questions like "you have a twin sister, but your in a different grade? why??" I sooo don't want that for him. Kids can be very cruel and I just don't want to start him out on a negative footing.

Intellectually, he is off the charts! He can spell and write his own name and he isn't even 4 yet! That is awesome! He knows soo much, but socially is where he struggles. It is REALLY, and I mean REALLY, hard to get him to sit still and not jump around.

We have friends that have a cabin in Tahoe who invited us to come up with them and spend the weekend. We did, and honestly, we decided that trips as a family should be just kept to that for now. Jake has outbursts and they aren't things we can control. And when a kid wakes up at 5:30am every morning and can't sit still and is REAL loud, it gets real old and we felt really bad for our friends. I know they said, 'don't worry about it". But that is so hard to do when it is your kid. When we are home, it is a different story. We are use to his outbursts and such and can tolerate them better than an outsider.

So, hopefully this last year, he will learn how to sit still and listen a little better.

Wish us luck tomorrow!

Welcome to Holland

A friend of mine posted this on her Facebook page and I couldn't resist re-posting it here.

This is the perfect way to describe raising a child with special needs.

Welcome to Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not share 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 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 go to Italy, you many never be free to enjoy the very special, the very lovely things....about Holland.

My Son

I know that I talk a lot about Grace and Caroline and have shown pics of the girls and Jake, but have just realized that I have never written a post just about him.

I thought about why I hadn't yet done it and I think it's because I feel so protective of him. He is my son and that little boy owns my heart! And for reasons I am still unsure of, I have a hard time writing about him. Not because I don't want to share him with the world, but I think because I am just protective of him.

When Jake was 11months old, I knew something was off with him. There would be many times that I would say his name and he would not budge. I could scream it from the top of my lungs and it was like he had selective deafness. He would not hear me or recognize that I was calling his name.

There were times that he would stare out the window at the willow tree. Watching the switches blow back and forth. He would just get lost in his thoughts. It was actually very serene and calm to watch him so still and content.

He was obsessed with opening and closing drawers. He was obsessed with anything that had wheels...still is! He could/wouldn't talk. His vocabulary was very, very limited.

The first thought that entered my head was that he is Autistic. So we started down the road of evaluation after evaluation. It was a long, long process. That involved many, many appointments with speech & occupational therapists as well as a couple of child psychologists.

After all the testing was done it was decided that he would start intensive speech and occupational therapy, otherwise known as ABA therapy. He started all this when he was 24 months old. The timing worked out to be perfect as I was pregnant with Caroline at the time and had just started my maternity leave. So the therapist would come to our house everyday for 6 hours a day. It wasn't long before we started seeing immediate progress!

After about 2 weeks of therapy, I finally heard what I had been waiting months and months for....he looked over at me and said "Mama"! There was no holding back those tears. So many worries vanished that day. And the smile that was on his face was one of pride and accomplishment. He was so proud that he was finally able to communicate with us! I will never forget that day!

He is now 3 1/2 years old and goes to a state funded school everyday for 4 hours a day where he still continues his therapy. They say that he is intellectually off the chart, and now they are working on his social skills.

He has come such a long, long way from where he was just a year ago and I am so, so proud of my wonderful son.

I love you baby boy!

~Mama