Fitting In

From the moment Alex started attending school at 2.5 years old, I have always worried about him fitting in with his peers. We are fortunate to be in a district where Alex is part of a General Ed classroom mixed with typical children and children with needs. Most of the other children in his class with needs only require speech therapy. He is the only child who isn't mobile and non-verbal. This made me worry like crazy when school started. I am always afraid kids will make fun of him or stare. Of course there are questions and the teachers are amazing with the kids with trying to explain things and make them understand why Alex is the way he is without getting too technical. The other children are sometimes hesitant to approach Alex mostly because they don't know what to say or do.

As the days and weeks went on back in the fall the children eventually saw that there was nothing to be afraid of when it came to Alex. He was just as curious about them as they were about him.They would start to come over to him in his stander and play with him and his toys. They would bring him toys and pick them up for him if he dropped them.

Now, the kids can't get enough of him. They treat him just like any other peer in the class. They play and interact with him and if they go to the gym or outside, they try to encourage him to chase them when he is in his Gait Trainer (walker). The teacher took video of this the other day and it was so cute.

The girls love him. There are three in particular right now that cater to him. Sapphire, Samantha and Maddison. Almost everyday his backpack has a picture from either Samantha or Maddison. Maddison - who has been his friend from the beginning is so sweet. She adores Alex and I know he adores her. She pushes him in his stroller, plays "tag" with him in the gym or outside, draws pictures for him and even reads to him.

I have had the pleasure of becoming friends with Maddison's mom Kristina as well and I cannot express to her enough what Maddison means to me.. She should be so proud of her daughter, for taking the time to get to know Alex the way she has. To be so accepting, helpful and caring. She didn't have to be his friend. She didn't have to go out of her way to make him feel special, she CHOSE to and I will never forget that. Neither will Alex.

Here are a couple of pictures of Alex and Maddison

Christmas at School

Halloween at School

Cerebral Palsy Awareness

Wear Green on 3.25.15 to Support Cerebral Palsy

I will be the first to admit that up until four and a half years ago, I didn’t know much about Cerebral Palsy (CP). I had heard of it, but I had no idea how it was caused or how many people were affected by it. That all changed on August 13, 2010 when I was told of the brain damage my four week old son had suffered. Somewhere along the way, he had suffered oxygen deprivation causing PVL (Periventricular Leukomalacia) which is damage to the white matter of his brain. I was told that there was no way to tell how extensive the damage was at that time, but eventually he would develop CP. That too, would become a waiting game to see what he would be able to do and what he wouldn’t. So, we waited.

Alex will be 5 in July. It has been a long road, one that I never thought I would travel. I have learned so much from him in the few years I have been blessed to be his Mother. His strength is undeniable; his smile will steal your heart and he draws a crowd wherever he goes. He has been in Physical Therapy since he was ten months old going two to three times a week, he attends a Therapeutic Horseback Riding program once a week and once a year we do a three month intensive therapy program at EuroPeds in Pontiac. He cannot talk and he cannot walk, but he sure can light up a room!

The reason I am telling you all of this is because according to cerebralpalsy.org, there are 764,000 people in the United States today living with some form of CP. I bet that number surprises you because we don’t hear much about it. Maybe a story here or there will pop up on the nightly news of someone who suffers from CP that has done something incredible, but there are hundreds of thousands of stories out there waiting to be told. Nearly 10,000 babies born each year will develop CP and 2-3 children out of 1,000 have CP. There are no two cases alike either, which makes it hard to fully understand this disability.

March is National Cerebral Palsy Awareness month and March 25, 2015 specifically is National Cerebral Palsy Awareness Day. On this day, we wear green to support the CP world and all month long we push for more awareness and more research. Having a child with CP is not cheap. The equipment, therapies, and specialist appointments add up. I am always fighting with insurance for one thing or another that would better my child’s life. It saddens me that I have to fight the way I do when clearly it would benefit him.

On March 25th, my husband and I are attending a conference in Ann Arbor, MI called Reaching for the Stars. It is a foundation of hope for children with cerebral palsy. I am really excited to be a part of this and to see what kind of  ideas they have moving forward. This is the first type of organization like this in Michigan. Their goal is to be a support system for families with cerbral palsy, do some fundraising and advocate to bring more awareness. You can check out their website for more information: reachingforthestars.org

Please show your support and wear green for CP on March 25^th, and share with the world that you care. 

Moments in Time

Today I was looking through some photos from our trip to Florida back in 2012. Alex and Evan were 19 months old. They were so chubby and cute and their little baby faces brought tears to my eyes. It doesn't seem like it was that long ago, and then there are moments when it seems like forever. Time goes by so much faster than we realize and sometimes I feel like things get lost in the shuffle.

I know I am not going to get these years in their lives back, so I really try to capture moments in time with them so I have it to reflect on later in life. Besides the photos and videos of them, I have a notebook for each of them that I have been keeping since they were a few months old. In them, are little moments like the first time they laughed, the first time they rolled over, certain moments we shared as a family, words they have said or funny little things that they have done that I may not remember 10 or 20 years from now. It is all hand written, and each year on their birthday I write them each a letter to tell them how proud I am and I list out their accomplishments over the past year.

I have always enjoyed writing and have kept a journal myself for years. These are like journals of their lives. My plan is to journal the first eighteen years of their lives and give them the journals when they graduate from high school. I hope they will enjoy them and appreciate them as much as I do.

I just found out today that I have to go next Wednesday and register them for Kindergarten. This is bringing a lot of emotions out of me that I didn't think would. Because of Alex's delays, they have both been involved in school since they were 18 months old. First they attended an Early On program, and two and a half years of preschool. I wasn't sure if they would start school this year or next because they are going to be a young 5 - having a July birthday and all. I also wasn't sure if they would be ready, but after getting Evan's progress report today, and completing Alex's IEP for the next year, that seems to be the plan. Evan is one of the top students in his class and the teacher doesn't seem to have any qualms about sending him onto Kindergarten. As for Alex, his team doesn't feel a need to hold him back from going either since they will be modifying his lesson plan to fit his needs as he will be in a General Ed classroom.

It is crazy to me that this moment has come. Even though they have been in school for some time now, it is still very humbling for me to reach this moment in time. I feel like they are growing up so fast and because they are the same age, this is happening for me all at once. I don't have a younger child to do this with all over again in a couple of years. This is it and it is somewhat sad for me.

Having twins creates a busier than normal life; Having a child with Cerebral Palsy who is a twin creates a life 10 times busier than you would ever expect. That is why I like to create moments and memories with my boys that are going to last a lifetime. I don't want to ever hold back on giving Alex and Evan the life they deserve and I also don't want Alex to feel like we have to slow down or that he is holding us back from doing certain things. Just like his teachers, we will make modifications so he gets to experience life in every way possible and we will record these moments in time for him to remember forever.

Here are a few pics from Cocoa Beach in February 2012 with our babies.

Cocoa Beach 2012

Eric and Evan

Me and Alex

Bright Spot

Let me start by saying that February has to be my least favorite month of the year. Not only do the winter blues set in for me but we always end up sick and this year has been no exception. It has been extremely cold this month. The boys have had 2 snow days and 2 “cold” days. With wind chills at -25 below zero there isn’t a whole lot to do and the cold is just unbearable. I may have said this in the past, but I don’t mind the snow as much as the cold. Then, the first two weeks of the month the boys were sick. First was horrible coughs and runny noses, then the stomach bug hit and it got all four of us at some point within the same week. I am sure hoping that is it for awhile or even the season.

Spring is less than 4 weeks away according to the calendar but here in good ole Michigan, it usually doesn’t warm up until mid-April – if we are lucky. So we have to just grin and bear it for another 6-8 weeks. I really hope that it isn’t that long though.

We were able to get out and about today and it turned out to be a really good day. We took the boys to Jeepers at the mall. They have only been there one other time and it was only to play games. Today they got the all access wrist band to ride the rides and play on the slides. They had a really good time. I was able to climb up and go on the slides with Alex. Not sure that was allowed, but no one stopped me and he loved every second of it. Then, we went on the little roller coaster. First I took Evan, who I could tell on the first hill, was as white as a sheet. It took me back about 13 years when I rode a carnival ride with Eric. Not only was it the first ride, but it ended up being the only ride I ever rode with him. I had a feeling that Evan was going to follow in his footsteps. I was told multiple times that he DID NOT like the ride and that it was way too fast. HaHaHa. Then, I took Alex. We rode it 5 or 6 times. He would laugh so hard throughout the whole ride and then cry when it was over. I knew he was going to love it!!! I am really glad he was able to experience it, because it really made his day...and mine too.

We had a nice lunch afterward at TGIFridays and home we went. The boys were exhausted. I am glad we were able to get out and do something fun and the boys actually behaved and had fun too.

Today has been a bright spot after weeks of cold, snow and sickness. I am so glad it happened. It was something we all needed. Their smiles say it all.

Evan and Eric on the bumper cars

Getting Ready for another ride

Chilling, waiting for Evan and Daddy

Evan had a blast

Evan on the Banana ride

Waiting for our last ride!

You can take your "checked box" and.....

Even before I became a Mother, I knew deep down that I would be overprotective of my children. Always wanting to keep them safe and wanting nothing but the best for them. With Alex, I am probably 10 times over what I should be, because he has so many more needs and I am always worrying about him being ok. I know that both of my boys will be subjected to teasing and even ridicule as I think all of us as children are. I know I was. It is hard as a parent to wonder and worry about things like this as much as it is to experience failure. I don't ever want either of them to think or feel like they are a failure, that is why dealing with certain things when it comes to my boys is especially hard on me.

With the boys going into Kindergarten next year, (I know right?) they have been doing hearing and vision screenings so they are all set with the paperwork. I was unaware of the vision screen back in September but I got the paperwork yesterday that Evan passed. There was also a slip for Alex and his was noted that he was "unable to screen". I know this. It isn't news to me that my child cannot read the letters provided or speak to the person screening him. I guess I just don't understand why they would even attempt to screen him when they know he won't pass and then give me a slip of paper that pretty much says FAIL on it. I guess they are just doing their jobs. I know they have to screen him for their records and maybe it just stings a little when I see something like that. He sees an eye specialist, so I planned on getting a report from him before school starts so that they have it on paper that he can see just fine and that his vision is good. I know all is good, but it broke my heart into a million pieces when I saw his note.

As for the hearing test, I was actually there the day they did that so I was in the room with him. The objective was that when the child heard the noise they were to put a block in the bucket. Well, Alex isn't going to make that connection, but I explained to the screener that I bet he will make some sort of facial expression when he hears the noise. Sure enough he smiled when it beeped into his ear on the headphones. We went through the whole process and then she tells me that she can't pass him because he didn't do the test the way they require it. It took everything in me not to smack her across the face for being ignorant. What was the point of making him sit there and go through it when you were going to fail him either way? Can you tell my blood was boiling? So now I get to look forward to receiving that slip of paper with the "unable to screen" box checked off again.

I am sure some people are going to read this and think I am being overly dramatic and I shouldn't let it "get to me" or I shouldn't stress because it "isn't that big of a deal". Well it IS a big deal to me.
My child is special needs and he is in a General Education class. I am grateful for that, but if you know that he isn't going to pass the screening, then why put him through it? Why not just contact me to see if there is a way for me to get the information you are looking for instead of making my kid look like a failure? It is different if there is an underlying issue that I don't know about, but with Alex it is pretty cut and dry. He is non-verbal and there are certain connections that his brain just cannot make.

I get it. They are doing their jobs and while I am grateful that Alex is included in these screenings, it just gets emotions running high within me because it completely zeros in on the fact that he has this disability and there are certain things he just cannot do.

I am sure these situations will get easier and just become the "norm" for me, but today I wanted my voice to be heard because no matter what box is checked, Alex will NEVER be a failure in my eyes.

WINNER

Circus Fun

On Sunday we took the boys to the Shrine Circus! This year we went with our favorite family - The Raddatz's. As always we had a great time amongst the whining and stress. Can't expect anything less with four kids under 7. Here are some pics from our adventure together. Afterward we went to this Chinese Restaurant that Eric has been wanting to try. He was NOT disappointed.



Evan climbing the bounce house wall

Alex Riding a Pony


 



The Clowns "Clowning" around



Acrobat



This dude looked like Elvis busting some moves



Our Best attempt at a photo



The Raddatz Family

Eric enjoying his Chinese Food



Our Fortunes from the fortune cookies. Clockwise from top:
Eric, Alex, Evan and Me



Eric's fortune fit him to a T. Evan and I got the same fortune which I can also see ringing true for both of us, but it was Alex's fortune that stood out to me. I couldn't believe out of 9 cookies, this was the fortune he got. 'You will overcome difficult times". This is the one fortune I will believe in.

Flint Children's Museum Fieldtrip

This past Thursday, Alex and Evan had their first field trip of the year to the Flint Children's Museum. We have been there before so they are very familiar with it and love it there! Here are some pictures of them having fun!!