I knew this day would come

I was going through with our night-time routine just like I do every other night.  I got the kids their clothes for tomorrow after Chris had his bath.  I pulled out blue for tomorrow for Dress Blue for Autism day.  Matthew asked me why I had picked blue for everyone.  It was such a loaded question.  I explained as much as I could that we were wearing blue to honor Chris.  Matthew asked me what autism was and why Chris had it.  My reply was as simple as I could for a 5 year old who could also have autism.  "Chris was born with autism.  It makes it hard for him to let us know what he wants sometimes and that's why he has to work so hard to do things."  I pulled a book I had called "All About My Brother"

 and read it to them for their bedtime story.  Next came the moment that I wasn't prepared for.  Chris looked at me and said "Mama I don't like my autism.  Can you make it go bye-bye?"  I started crying and told him I loved his autism because I love him. I tell everyone he does have a purpose. We were given a 1% chance of concieving on our own and we had him. He's meant for greatness.

This was one of his first pictures. 

Wordless Wednesday

*Don't forget to sign up for my giveaway!*

Hopes and Dreams

7 years ago George and I were engaged and finishing details of wedding planning.  Our wedding would be in 4 months and we were putting the final details on the plans.  More importantly we were disucssing our future.  Afterall, planning a wedding is one thing but planning a lifetime is something else.

We were discussing how big or small we wanted our family to be.  We discussed things like how to parent our hypothetical children.  We were not in agreement with when to start adding to our family.  I wanted to have children right away and George wanted to wait until we were married a year.

We had dreams of a small family.  I remember when George and I were trying to figure out how many children to have he told me he had a dream where we had one more child than what he wanted and that child had special needs.  His dream lead to us divorcing over the stress over having a special needs child.

Not long after we got married we decided to have children sooner than we initially planned.  After we found out we would have difficulty concieving our hopes were dashed.  Our dreams of getting married and making babies the old fashioned way were gone.  We had issues on both our ends with infertility.  Even if it were just one of the other it still was an us thing.  It affected both of us.  We hoped to have A child instead of a large family.

6 years ago we were hoping that our twins would make it and I would be able to have a complication free pregnancy with them.  Instead our dreams were dashed with a pregnancy that had complication after complication.  I had hyperamisis, lost a lot of weight, had incompentant cervix and a cerclage only to go into preterm labor upon the stitch being put it.  After months of bedrest my water broke early. 

Our hope turned into dreams of our children developing typically.  We worried about the boys developmentment and it turned into reality as both boys got a bit older.   Both Jon and Matthew have learning difficulties and motor delays.  Jon has been showing signs of a possibility of dyslexia.  Matthew has a bunch of things going on and I'm becoming more frustrated with not any answers.

We were told we had a 1 percent chance of having a child on our own.  That dream seemed to be dashed until 16 months after Jon and Matthew were born.  Chris became a reality for us not just a dream!  Again, we hoped to have a healthy child.  Chris may not be super healthy but he has given us so much love. 

Chris, Matthew, and Jon have given us the initial dream that George had about having special needs children.  Our hopes and dreams have changed since that conversation 7 years ago.  Now I think that our marriage has become much more solid as a result of having our boys.  It may not be the best marriage; we have our problems in other areas but I think we have come together to provide the best we can for the boys.  I think that's all that I could ask for.

Now that I've shared my hopes and dreams I'm asking that you share yours.

I'm doing a giveaway with this pendant.  To win it you need to follow my blog and leave a comment.

For extra entries you can:

1.  Follow me on twitter.

2. Tweet about this give away and mention my twitter handle so I know you did it.

3.  Make sure you leave a comment for every entry.

Hope

Hope is a word that can be used in many ways.  To a special needs mom it can mean so much.  I hope that my children will grow and be the best they can be.  I hope they will be able to watch my boys grow up to be productive members of society.  I hope that my boys will grow up without ever hearing someone use hurtful words to them again.  My boys are amazing young men and I hope they grow up in a world where people will understand who they are and who they aren't.  Autism can be such a powerful stigma placed on someone and I hope they can overcome that stigma.  Most of all I hope they know how much I love them.  My children are my world. 

I am giving away a silver coin shaped charm with the word HOPE stamped on it. 

To be win this charming pendant you need to:

1. Follow my blog and leave a comment.

You can also do one or all of the following.

2. Follow me on twitter .

3.  Tweet about this giveaway. 

4.  Leave a comment with each entry.

This giveaway will end at midnight on Friday. 

Almost Wordless Wednesday

The twins that look nothing alike

My mom pledge

I joined the Mom Pledge about 2 weeks ago after reading what they stood for; preventing bullying.  It is something that NEEDS done.  I've seen bullying with my own kids and last week had witnessed it on-line between adults.

A dear friend of mine whom I've known for a bit over 4 years, a friend whom I've talked about on here more than once.  The Drama Mama and I met when we were both pregnant with our youngest children.  We were due around the same time.  Her son was born near his due date and mine was born 5 weeks early.  We continued chatting after our guys were born during our late nights as moms of newborns.

The Drama Mama was a victim of bullying last week by a group of women who have for several years made it to sasy nasty things to her.  These women will have nothing more said about them.  I will not give them the time of day.

I got to see the Mom Pledge in action last week when those who have signed the pledge came to her defense.  I am proud to be a member of such a group of women and for that reason I ask that you sign the mom pledge as well.

What to do? What to do?

I've made no secret that my chunky monkey can be as stubborn as a mule.  George tells me that he's got MY attitude.  We're getting reports home from school that he is having behavioral issues there now.  He's telling me he's tired or that the work is too hard for him.  I am the one that understands him the most so it is hard to convey that to school.  He is trying to tell them something by his behaviors yet it seems as if it is going un-noticed. 

I know that he needs to listen and behave himself but I keep going back to the simple point that he's 3.  Typical 3 year olds don't necessarily HAVE to go to school. Typical 3 year olds can tell you what is going on with them.  Typical 3 year olds don't to be taught how to walk, talk, and play.  It can be so hard to balance the fact that he is only 3 with throwing as much therapy as we can at him. 

School wants me to stop after school therapies.  I don't see how 2 hours a week after school is doing anything to harm him several days later in the afternoons of his school. 

I put in a call the the geneticist about it and she told me that they need to give him some downtime.  He goes from one class to lunch to the other class.  He has no recess and has no playtime.  We know that the 16p syndrome has fatigue with it and I'm worried that he is showing it more now.  She agrees with me to keep the after school therapies and ask school for a break in the day for Chris.  I'm ready to cut it down to half a day.  They aren't giving him DIR/Floortime.  We do a lot of play at home but I think he needs more of play type therapy.

I am getting flack from my mom about this.  I'm told I'm horrible for sending him to a full day program when he's just a baby.  I'm glad that she didn't have to worry about this the way I do.  That poor kid STILL woudln't be recieving the help they would need.

I am the Lorax

Last night I had a meeting with about 7 women who all have children in the special needs classes in our school district.  The district's proposed budget includes the privatization of classroom aids that come work with our children.  Our children will have people not fingerprinted, not certified, not safe to work with kids working with them.  There will be people in and out of the classrooms and once upon the hands of the private company it's on them to make sure that their workers do what they need to.  These people will be minimun wage workers without benefits and be expected to do well by our kids. 

Our kids are losing extended school year services and we are told that the district feels it is ok to have to relearn those skills again.  They expect that it will take up until the end of November to do so.  They will lose 1/3 of their schooling to re-learn skills they already knew.  Our kids are expected to do this all while keeping up with the general education curriculum and make gains in the proficient standing according to the NCLB ratings.  If not our children will be put into classess reflective of their inabilities not through any fault of their own.  

The district has become the Once-ler not concerned about our children but the profit they can make and the bottom line.  Our Bar-ba-Loots,

Swomee-Swans

 and Humming Fish

will be the casulities of this greedy Once-ler our school district.

Multiples and More:QOTW- SCHOOL

My boys are starting kindergarden next year.  It is the district's policy to seperate multiples as soon as they can.  My boys are on the same functioning level with a few expections to Matthew's motor skills and social skills.  My boys don't feed off of each other.  They aren't overly dependent on each other and don't look off of each other for answers.   I want them in the same kindergarden and fought to keep them in the same preschool.  When did you seperate your multiples?

I'm having a hard time thinking this was them not that long ago?  Please don't ask me who was who.  I can't tell you!

NYC and a New geneticist

We went to a new geneticist on Wednesday in New York.  She is the head of the genetic study we're doing through SimmonsVIPconnect.  We ended up taking Matthew as well as I believe he has the same syndrome that Christopher has.  She thinks we need to do more comprehensive bloodwork on Matthew.

What we all know about syndroms is that they don't affect kids the same way.  It's a syndrome because the symptoms carry from kid to kid.  Each kid will have different issues and no two kids will look the same, have the same needs, etc.  This is the case with Matthew and Christopher.  They have the same types of delays but Chris' are much more severe. 

We were told to up Chris' speech and PT in the school day.  I doubt we'll get it easily.  We are to call her in April to discuss placement for next school year.  I think what we're going to do with Matthew is wait until George and I get our results back and then test Matthew for the 16p11.2 syndrome.

This was the best picture I could get while we were driving since I had to nagivate too.  George wanted me to drive and I ended up crying.  No way in hell was I driving in New York City!