Monkey Lobster

Virginia

When your 4th grader can't stop talking about early American history, you pile into the car and head to Virginia for her spring break.

We started our trip in Chincoteague. An island on the coast, with miles of National Seashore, wild ponies, sandy beaches and roads and trails for biking. If you squint you can see some of the ponies in the background by the trees.

Then we continued on to Colonial Williamsburg and Jamestown. Elsa was so excited to walk through the doors of the court house where Thomas Jefferson first practiced law, stroll the streets where Patrick Henry addressed the public, and lay her hands on the original bricks laid by the first settlers in Jamestown. Giddy she was, we were grateful to experience that level of excitement without having to hit the parks in Orlando. So seeing as we were driving right through D.C. on the way back home, we couldn't rob her of the full experience without letting her lay eyes on the Declaration of Independence. 

What made the trip most enjoyable for those of us not as excited about early American history as Elsa was, were the bike paths and scenic road that tied everything together. Traveling with a child with special needs can be tricky and in a lot of ways Cyrus is still really just a big toddler. Trying to get him to walk, follow the rules and not touch anything is a losing battle. He used to be a big back pack rider but at this point he has just grown out of it. So now the WeeHoo is our new best friend. He is so happy to be in it, I see our future trips and weekend adventures being planned around bike routes. Now if we can just get him to peddle forwards instead of backwards.

 

making extraordinary out of ordinary

We just get so excited when Cyrus does something ordinary. There is a lot that he doesn't do,that maybe he won't do, but he does cut with scissors.  And I can't help but rejoice in his extraordinary accomplishments. Feel free to join in.

Cyrus turns 5

With our house still under crazy construction, we had a birthday out, and although this was a little hard for me, everyone elsa was pretty happy about it. Up until now Cyrus has not been aware of this special day, but this time he knew and I would say that it was his favorite day EVER.

I brought my guitar to his class and played some of his favorite songs, we had a crazy dance party and he smiled bigger than I have ever seen him smile. We set up the birthday ring and lit it and sang over and over again at home, happy birthday to Cyrus, and opened up a pile of presents from cousins, aunts, uncles and grandparents. He wore his crown all day long and strutted his strut for strangers on the street who all stopped to wish him a happy birthday.

He thought he had been crowned the king.

As we were waiting for the bus the next morning, he made a mad dash back to the house and came back out waving his crown. He put it on his head as he was getting on the bus and said "Cyrus Burdae". I tried to tell him that it was not, but he was not having it. I think that he though that his luck had changed that day, and from then on he was to be the center of attention. King of the universe. He has gotten over it since.

Oh how we love this sweet, sweet boy. There were times that I wanted to give him back, when I wasn't sure I was up to the challenge of raising a child with a significant disability. People who raise children with special needs often say that they are blessed, it has taken me 5 years to understand this. I now know that I am up for the challenge, and that having this boy in our family makes us all better than we were before.

cyrus goes to school

Off he goes to school, back pack and all.  Cyrus has been receiving early intervention services from the department of health since he was 4 months old.  On his 3rd birthday those services end and school system begins to take over in Massachusetts.  After a long process of many phone calls and mama-assertiveness today is his 1st day of school.  He is there as a write this right now.  He will go four days a week for a couple hour in the mornings in an integrated class room, the same pre-school that Elsa attended as a typical child.  There he will get speech, occupational, and physical therapy in addition to the social integration from being in a preschool classroom.   

Although getting him registered was difficult and involved some muscle on my part, his educational team seems wonderful, sharing many of my educational philosophies and high standard of expectations for what young children (of all abilities) are capable of.  He will be with these teachers and therapist for the next three years.  I am very happy for him to begin this chapter of his life.

My advise to other CDLS families would be to schedule the IEP meeting for at least 2 months before the intended start date in order to give time for all the other pieces to fall into place. 

Now to figure out how to most effectively use my time.

Cyrus turns three

I can't believe it's been three years.  It's been a crazy three years for us. Having a second baby, ending up in the ICU, learning that he was different, dealing with many medical issues, specialist and surgeries, learning to be a parent of a child with special needs and then one day without even knowing it just being a parent. I'm not saying that it's no longer on my mind that Cyrus is different than other children, it just isn't the first thing on my mind.  Things just seem more settled, I feel more "normal".  Not so worried that someone might ask me how old he is and not know what to say, or that no-one will like him because he doesn't understand language. He is just the cutest, sweetest thing on the planet, and I am so happy to have him in my life.

We had a party for him this weekend with cake and lots of music and dancing.  He had a good time.

 

grateful for another milestone

 

 

I've been waiting for this day for a long time, it's a milestone for us.  Eating is a big issue for kids with Cornelia de Lange Syndrome.  He now weights over 25 pounds, is wearing size 2/3T and eating with utensils from a plate.  Wow!

Tea saucers, shot glasses and "play" silverware make up a good size plate setting for him, and squash-almond-meal pancakes make an easy to pick up sneak in the veggies and protein kind of meal.    

Inspired by soule mama (as I often am) I am reminded to be grateful for this grand achievement.  Yes the drink spills, dinner is rejected, and half chewed chunks of food land on other diners' plates, but for over a year I wondered to myself if he would EVER feed himself.  I am grateful for having the patience to continue to give him the cup and utensils knowing that it would make for more frustration and clean-up.  I am rejuvenated to continue to push him and hold us to higher expectations. 

communicating without words

Cyrus and I meet every week with a wonderful speech pathologist, who works with us on a lot of non-verbal communication.  For whatever unknown reason Cyrus (and other children with CDLS) are unable to decode and understand language like you or I, so we have come up with some other ways to help him navigate through his day as his needs and desires become more complex.

We rely a lot on sign language.  I used signs a lot with Elsa during her first year.  Check out these baby sign book made by progressive pioneer.  But Cyrus is a different  case, as his intellect grows his language still remains behind.  Here are some tools we have been experimenting with.Using some peel and stick velcro, I attached some available food choices to a little nook in our kitchen. The food choices are much more concreate, and although he already has signs and a few words, I think that the concept of pictures as representation is an important step for him.  Here are some emotions.Our newest project is "first and then".  He is having a hard time understanding how to wait, and the sequencing of things.  Like..........first we feed the chickens, and then I can pull you in the wagon. 

So first we sing a song, say all done and put the picture in the envelope. And then have a little snack, and then say all done and put that one in the envelope too.  I have pictures for play, computor, Elsa, garden, drink, chickens ect.  So far it's a fun game but I'm hoping it will grow into an understanding of a more complicated concept.

I would love to hear about any non-verbal communications that you have used.

cyrus and me

May 9th is Cornelia de Lange awareness day and a fellow parent of a child with CDLS is encouraging me to post about it. Raising a child with special needs I often get caught up in all the things he can't do. Here are some things he CAN do.Feed, or rather steal food from the chickens.Water the plants.Walk down to the river.Negotiate over obstacles.Throw rocks in the river.Have a great time exploring his world.

All went as planned................poor little guy, poor mama too.

I was hoping for this blog to be full of happy creativeness, but that is just not a reality for us a lot of the time.   I am just now beginning to let others into that big part of my life.

Leaving my baby boy in a HUGE, sterile, (thank goodness) scary operating room in the care of 2 doctors and 3 nurses was a hard thing to do.  And the recovery of it is not much easier either.  After spending weeks dreading the day I am now on an emotional roller coaster, a bit of surprise as I was expecting relief on the other end of it. 

But some how we survive the hard parts and create and celebrate around them.

bad teeth

Cyrus has his dental procedure down at the children's hospital tomorrow.  It is a big ordeal for me because he needs to go under general anesthesia, which involves fasting, waking up early and driving, seeing him in those tiny scrubs, and watching him "fall asleep", oh and did I mention worry, worry, worry?  Oh motherhood.  Well wish us luck and I'll give you and update when we return.