Last week we celebrated 2 birthdays Z and A. Z turned 11 and A turned 8. Birthdays around a holiday are never easy, birthdays 3 days apart are almost impossible! There has to be a delicate balance of placing complete focus on each child without feeling like they are being dumped for the next person. It is also imperative that the child or children without the birthday is also recognized so they will not feel left out. As toddlers this was always a difficult balance. Our eldest daughter would feel left our or take over the toys her younger sister received so she could feel some kind of recognition. For a while we would give her something small so she could enjoy the celebration instead of being envious. This year without the fuss all the kids enjoyed the celebration. I love how Jackson loves to be a part of everything. He is different than any other child in the fact that he excited just to be a part, but could care less of what the person gets. This year Jackson is beginning to understand the idea of birthdays and celebration, he loves to help open gifts and see the excitement on the person's face. I love that he cares so much about how the others feel and not about what new toy he can play with!
Last year was Z's last year for a big party until he hit his milestones like 13, 16, etc. During all of this we were also fighting sickness between 3 out of 4 kids. We celebrated with a movie and pizza and time spent with a couple of friends playing Xbox 360. It's nice to see his choice of friends. They all play well together without the need to be dominant, they encourage each other to do better and help each other along the way. It is my hope that through the following awkward years that they will continue to see each other through some of the difficult times. I also love how they include Jack. This year we made sure that Z received our undivided attention and requested that our other 3 stayed the night at grandma's house. This small change allowed Z to truly enjoy himself and had the best birthday ever... Z got everything he requested, time with friends, time with his parents (alone), and the opportunity to see a movie...and a few gifts. We were also able to celebrate as a family and had the opportunity to laugh and enjoy each other.
A's birthday of course followed. Because her birthday is so close to the holiday and behind Z's birthday we kept is small, just family, plus Z ended up getting sick. Luckily A chose to have her party the weekend after Thanksgiving. She talked about a skating party and all the other types, but we also shared with her that the more money we spent on one thing takes away from the other. So she chose not to have an elaborate party with all of her classmates and friends, but to have a slumber party. This is her first slumber party and is very excited! Again we will be taking her and her friends to see a movie, but then she wants to come home and make pizzas and play on the Wii, with her new game "Just Dance 2". My hope is that she does not become too passionate about winning and lose focus on the other girls. It will be nice to see her interact with some of her friends. Many of them are new to me, but the ones I know they seem to always get along, help each other. My hope is that she will find someone she really connects with and that she will have someone who she will always want to have over.
I would say this month of birthdays was successful. It was different but it worked for us and the end result was happiness so how can we complain?
Sunday, November 28, 2010
Wednesday, November 24, 2010
Monday, November 15, 2010
Times they are a changin!
I am hoping to make sure I blog every new change that I see this year so that I can be truly amazed at the changes. Last week I took J to the Doctor for a well check and to see about the possibility of other factors that could be hindering his progress. I have always felt that even though J had a disability he would be on the higher spectrum.
For Down Syndrome there are 3 approximate levels, now just like any disability there are spectrum's of variance so for DS there are High functioning, moderate, and severe. We pushed to make sure he was high functioning, but after he was tested last year even I began to question. There is nothing more humbling than seeing test results to verify your fears. His IQ testing that he did last year was something that I had dread all year. Maybe because I knew that he was not verbal, which means it would be difficult to communicate. If this is true it makes any decent score highly impossible and I was right. We chose not to take that particular test because we knew that he needed more time to become verbal. Every year J makes tremendous strides! So many of them I revel at what he accomplishes because of the struggles he goes through. It was told to me when he was very young that children with D.S. have peaks and plateaus. I chose not use the word plateau because that would mean he wasn't learning, in fact it was very much the opposite. I chose to call it his observation period. During his observation period he learns to perfect, he sees the ins and outs of what to do so that when he takes off it is as though he's been doing it for months.
For example, Jackson was never interested in potty training. So I followed his steps and worked with him occasionally, but never pushed. I knew that when he was ready he would let me know. So at the end of May he chose to potty train and went from pull-ups to no pull-ups day or night within a couple of weeks. Granted there were accidents, but he was learning quickly. Then he regressed after a vacation and change. I thought it would take months to retrain, but actually is only took a couple of weeks and now minus a little tummy bug is completely potty trained and no longer has to be asked to go, he goes on his own!! From my understanding this if very exceptional for a child with D.S. because most are not trained until they are 9 or 10 years old!
Although he had made great strides on this (which is an awesome accomplishment), he was still having difficulties with impulsiveness, and following directions. At school he would try to hide all the work portions of his schedule so that all he would have to do is play (pretty smart cookie!). His problem solving skills are astounding and his teacher is awed and inspired by his creativity every day. So I chose to have him evaluated.
When I took him to the Dr. I told him of J's problem solving abilities, and he also read what his teacher saw as well. I shared with him that J's teacher had never seen such an active child with D.S. She has said that typically children with D.S. are very compliant, easy to get along with, and content...Jackson was defiant, loving, and a ball of energy. The idea of sitting down for any time longer than a couple of minutes was unheard of! LOL..After letting the Dr. know what we all saw and knowing that his other siblings were all either ADD or ADHD it was clear that is just wasn't the disability but also ADHD! So I now have 2 kids with ADD and 2 with ADHD! It is genetic and dad is also on meds and has seen a difference in his focus and productivity. So J is now on medicine.
The Medicine has been a wonderful change in his behavior. I made sure that we kept a close eye on him because one thing that I didn't want is for his personality to change. His teachers felt the same way and have been great on keeping me informed. Today was his first official day on the medicine without being sick so today we truly had the opportunity to see what he could do. Today he was very helpful! He helped put up the musical instruments at music, today he was also very good at PE and during recess!! Okay so you may not completely understand how huge this is so let me give you a little history. Since J began at his school he has not been able to play at recess with the other kids. He would be so over stimulated that he would begin to kick, throw rocks, and hit people. So he would be able to play outside after everyone else had gone in. This was the only effect way we could get the best of him. During music class he would run around the room once he had all he could. Though he loves music the idea of sitting still and obeying was difficult for him. So to be cooperative at PE and recess was a huge leap for him!!
Over the weekend I was also able to witness that Jackson could dress himself from top to bottom! He still struggles with snaps and zippers, but he now can differentiate between the front and back of an item and can also understand where the entrance is to put something on. The ability to use the fine motor skills is a difficult task and many other motor skills must be accomplished before the simplistic of concepts can be finalized. There are still a few struggles such as finding the entrance for his shirts, but once I show him he can do the rest himself.
Today another huge leap came today as Jackson was trying to talk to me. He must have seen the look on my face when I didn't understand him. He said Mama look...then using his hands he glided one hand down the other arm and he slowly said W....O.....R.... and tapped his hand with the K sound at the end. He has never said the K sound at the end of the word until today. It was priceless!
After seeing such improvement in such a short period of time and seeing that J is now requesting to work instead of just play because he can now focus I have begun to realize that this will be the school year that he will shock and amaze us all! I never underestimate what he can do, only in the time in which he does it. Things that I think will take him months take only a short time when he is focused and ready. This will become a year to remember and record!
For Down Syndrome there are 3 approximate levels, now just like any disability there are spectrum's of variance so for DS there are High functioning, moderate, and severe. We pushed to make sure he was high functioning, but after he was tested last year even I began to question. There is nothing more humbling than seeing test results to verify your fears. His IQ testing that he did last year was something that I had dread all year. Maybe because I knew that he was not verbal, which means it would be difficult to communicate. If this is true it makes any decent score highly impossible and I was right. We chose not to take that particular test because we knew that he needed more time to become verbal. Every year J makes tremendous strides! So many of them I revel at what he accomplishes because of the struggles he goes through. It was told to me when he was very young that children with D.S. have peaks and plateaus. I chose not use the word plateau because that would mean he wasn't learning, in fact it was very much the opposite. I chose to call it his observation period. During his observation period he learns to perfect, he sees the ins and outs of what to do so that when he takes off it is as though he's been doing it for months.
For example, Jackson was never interested in potty training. So I followed his steps and worked with him occasionally, but never pushed. I knew that when he was ready he would let me know. So at the end of May he chose to potty train and went from pull-ups to no pull-ups day or night within a couple of weeks. Granted there were accidents, but he was learning quickly. Then he regressed after a vacation and change. I thought it would take months to retrain, but actually is only took a couple of weeks and now minus a little tummy bug is completely potty trained and no longer has to be asked to go, he goes on his own!! From my understanding this if very exceptional for a child with D.S. because most are not trained until they are 9 or 10 years old!
Although he had made great strides on this (which is an awesome accomplishment), he was still having difficulties with impulsiveness, and following directions. At school he would try to hide all the work portions of his schedule so that all he would have to do is play (pretty smart cookie!). His problem solving skills are astounding and his teacher is awed and inspired by his creativity every day. So I chose to have him evaluated.
When I took him to the Dr. I told him of J's problem solving abilities, and he also read what his teacher saw as well. I shared with him that J's teacher had never seen such an active child with D.S. She has said that typically children with D.S. are very compliant, easy to get along with, and content...Jackson was defiant, loving, and a ball of energy. The idea of sitting down for any time longer than a couple of minutes was unheard of! LOL..After letting the Dr. know what we all saw and knowing that his other siblings were all either ADD or ADHD it was clear that is just wasn't the disability but also ADHD! So I now have 2 kids with ADD and 2 with ADHD! It is genetic and dad is also on meds and has seen a difference in his focus and productivity. So J is now on medicine.
The Medicine has been a wonderful change in his behavior. I made sure that we kept a close eye on him because one thing that I didn't want is for his personality to change. His teachers felt the same way and have been great on keeping me informed. Today was his first official day on the medicine without being sick so today we truly had the opportunity to see what he could do. Today he was very helpful! He helped put up the musical instruments at music, today he was also very good at PE and during recess!! Okay so you may not completely understand how huge this is so let me give you a little history. Since J began at his school he has not been able to play at recess with the other kids. He would be so over stimulated that he would begin to kick, throw rocks, and hit people. So he would be able to play outside after everyone else had gone in. This was the only effect way we could get the best of him. During music class he would run around the room once he had all he could. Though he loves music the idea of sitting still and obeying was difficult for him. So to be cooperative at PE and recess was a huge leap for him!!
Over the weekend I was also able to witness that Jackson could dress himself from top to bottom! He still struggles with snaps and zippers, but he now can differentiate between the front and back of an item and can also understand where the entrance is to put something on. The ability to use the fine motor skills is a difficult task and many other motor skills must be accomplished before the simplistic of concepts can be finalized. There are still a few struggles such as finding the entrance for his shirts, but once I show him he can do the rest himself.
Today another huge leap came today as Jackson was trying to talk to me. He must have seen the look on my face when I didn't understand him. He said Mama look...then using his hands he glided one hand down the other arm and he slowly said W....O.....R.... and tapped his hand with the K sound at the end. He has never said the K sound at the end of the word until today. It was priceless!
After seeing such improvement in such a short period of time and seeing that J is now requesting to work instead of just play because he can now focus I have begun to realize that this will be the school year that he will shock and amaze us all! I never underestimate what he can do, only in the time in which he does it. Things that I think will take him months take only a short time when he is focused and ready. This will become a year to remember and record!
Monday, November 8, 2010
Inspiration
Yesterday we were watching "The Kirate Kid" during our family movie night and in that movie was a great quote: "Breakthroughs happen because someone is scared to death to stop trying!"
We live in a small community, which many say is almost perfect. This can be seen by the lack of police beat that is published in the newspaper in comparison to the surrounding cities. In our community it's about the type of clothes worn, the cars driven and the amount of kids, not to mention how long and how many ties are within either by blood or through years of living in the area. This is just like every other community I'm sure.
What is not seen are the wives and mothers who are lonely because their husbands are at work to continue the lifestyle they have become accustomed to living. The families who struggle to make ends meet because of tragedy or lack of knowledge and focus. Most importantly are the families who have kiddos with special needs.
It's time for a change! In order for change to happen their must be a shift in thinking. Our special kids need to be seen within the community of their peers, their families need to know they are supported and loved because in most incidences the families feel alone and unsupported. We (my husband and I) have already begun to create that shift.
Many ideas have already been thought up and started. Our plans will take time. For right now I will continue to pray that when the time comes, people will be open to the ideas and be willing participants because God has stirred something within them. Currently, the only thing available for our kids outside of school is the baseball team. Our plans within the next 3 years will involve creating a place within the sports arena so that everyone has an opportunity to participate in every sport.
To help jump start our dream we (hubby and I) have begun to spread our wings so that j can fly independently. At our church our population has grown with children of special needs and it is now important to fertilize it and watch it grow. This idea was jump started by another mother but due to the age of her infant and needs of her child she could no longer continue the journey. In order to make sure her ideas and passion didn't fall by the wayside my hubby and I chose to take what she started and move forward so that one day she too could enjoy the benefits she awarded us! This is by no means an easy task, but considering we are further along in our journey than this mom with a passion, it was necessary!
At the beginning of the year we will begin our voyage into the special education field. At this point I am learning to write the curriculum for my son and it is my hope that in January I will be able to begin writing curriculum for all our kids, have a place for them to go, and provide training so that our volunteers can feel confident. We also plan on setting up a support group for our families so they do not get lost in everything. It is so important that people understand and have a heart for our children who so often cannot communicate their needs. It is also VERY important that these parents have a voice and are not forgotten because in all honesty they live closer to God than anyone can ever hope to!
As the parents of special needs children we are in continual prayer for patience and guidance. We are continually looking to Him to direct our paths, lead people to us who we can talk to, support, lean-on, and also befriend our child who wouldn't otherwise have a friend! Every day we look at the face of God through our special children and wonder what we will be taught and how they will amaze us! Yet so many times we have no voice because our children often have broken down before the eyes of many and we are judged because of what we may or may not do, how we parent them, and the style in which it's done. So often it feels as though no one cares and this will no longer take place! No one should have to feel dismissed and/or worthless! To make sure this no longer happens our journey will continue because we are scared to death to stop trying!
We will begin to partner with community organizations to raise awareness in our community, train local businesses to create jobs for our kids as well as train the kids/adults on their new positions. We will change the way people think about our kids, so that our kids will have the life they deserve.
It is my hope that one day we can look back and be amazed at how far we've come and what our children can now do. I hope that I will find others with the same inspiration who I can work with to make our vision and passion come true.
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