Work time!

I think we finally have his meds adjusted! You can tell when it kicks in, he goes from a million miles a minute to steady and focused. He begins to pull out his puzzles, paper and pencils, computer, etc. I love it, just wasn't prepared for the change, so once I saw it and his desire to work I quickly contacted his teacher because I had no idea what he needed to work on. I mean I knew what he could work on, but I also wanted him to continue what he has been working on at school at home too! So this is what he is working on:

• working with large button and button holes to increase his manual dexterity
• 24 piece puzzles
• counting 10 objects
• working with large bolts and nuts (to screw on and off) 
• at this point he does well screwing the bolts off
• struggles putting the bolts back on and reversing the turning method
• Memory with 4 or 5 matches -- luckily we have Toy Story, so that was a bonus!!

He's working on quite a bit, but with the continual urge to learn I expect he will be increasing what he is working on. My hope is that by April he will start reading. I would hope sooner, but I do not know all the intricacies for him to learn. I just know that this summer I will need to have a game plan for him. I just can not sit idly by anymore and allow him to occupy himself, I will need a schedule so he can see what to work on next and have them readily available so he can either work independently or with someone. I enjoy watching him work and watching him problem solve he is very transparent in what he does if you just take the time to sit back and watch. He can figure things out well on his own, but it takes a little longer than average. It's a true test for me! After a few minutes I would be helping him or adjusting something for him to make it easier, but in all actuality if I just verbally praise him on his efforts or suggest without physically helping him, he does a great job! He has allowed me to watch and learn, wait on giving assistance, and praise without ceasing! I guess when you think about it, it is what God does for us. How awesome that must be to see them struggle, create, accomplish, and grow so transparently...if it makes his heart jump with joy like it does when I watch Jack, then those must be awesome moments!

So here are to more moments like that. Sometimes patience is just actively watching, learning, growing, and understanding the situation before trying to put your spin on things...it's an awakening experience that I have grown to love and appreciate, but not necessarily something I enjoy all the time!

Christmas Time (Always something new)

Last year was Jackson's first Christmas to understand the idea of presents. Not necessarily that there was something new inside, but understood that he could unwrap something. This was all he required, he was good with one gift after that he was preoccupied with the first gift and had no desire to see anymore. When it was required for someone else to unwrap, he was willing to help, excited that something else would need to be unwrapped. The previous years he was just happy to be there with no understanding of what we were doing.

With the knowledge of past experiences and the growth of each year, we always enter a celebration with a fresh pair of eyes and look at it as a new experience. We don't know how he will react, but we celebrate the changes and the excitement that comes with him. His excitement is so contagious it would be difficult to not be able to celebrate each moment with him! It always allows me to sit back and enjoy the simple things instead of missing moments because of commitments and traditions. It keeps us flexible as a family and tight-knit.

This year was met with the same experience and freshness. This year Jackson not only knew how to open gifts, he knew that they were for him! He enjoyed everything he got and commented "That's Cool!" to just about everything. He wanted to pass out gifts (which was new) and also waited patiently for his turn (unless we took too long looking at our gifts!). This year Jackson also became over-stimulated...this is not to say that his has never happened before, it was just shown differently. Typically Jackson would start crying or act out, which was typical everyday. This year maybe I was more aware, seeing as every year is also growth for me in my knowledge of how life affects him and how he will react to it. His over-stimulation this year was different as this year he requested a bath. Now I saw this coming and understood what it was before it happened (thankfully).

To back up for understanding the past few months Jackson has asked almost every day after school to take a bath. Not necessarily because he was dirty, but because it allowed him to unwind from the day. He would have his bubbles and his pick of toys that would join him in his conquest (whatever it was for the day). I would close the curtain and just let him go until he was ready to pull the plug. This also allowed me to help the kids with their homework and start dinner, so it helped the both of us! LOL At first I thought he wanted to take a bath because he enjoyed the water, but when I knew he had a hard day at school and he would request it I put 2 and 2 together.

Now back to Christmas...after our unwrapping at home Jackson asked to bathe on 3 separate occasions. Receiving each bath he was calmer and refreshed, but the mere fact that he wanted 3 was very unusual. So with that understanding we scaled WAY back! The next several days we were low key, going nowhere and expecting nothing so he could readjust. This is not to say that next year will be the same...we never know. But with the understanding and knowledge of this Christmas we will revisit our typical traditions and adjust to fit the needs of Jack. It will not only allow us to refocus our family but also allow us to question what is of the utmost importance -- traditions are always made to be broken if they no longer fit the needs of the family, and new memories will be made with the new traditions that are invented! I am sure this will not only benefit Jack but the other kids as well!

We had a wonderful Christmas! We had a restful break from school! Now to look forward to what the new year will bring!!

Continuum

For the past month we have been working on finding an ADHD medicine that work for our little man. We are now on the third medicine and I wonder if we will ever find something that works? The first one we tried he wanted to learn, he was very dedicated with his learning (which is great!), but we lost a piece of him somewhere.

So after a couple of weeks on the meds we tried something different. This new medicine didn't really work either. The impulsiveness was gone but he didn't want to work. So we changed it again. Once again the impulsiveness is gone, the hatefulness it not really there but he still wants to be by himself so he can focus. I think there is still something missing. Now that he is not in school I will have to watch him to see if I notice the small things as though I am monitoring a subject.

I also have to ask myself, is it the medicine or is he changing? He is becoming more independent: wants to dress himself, goes to the bathroom without being told. He's maturing and I see that, I have also noticed that he doesn't want to be babied in the tone of voice that comes across. He wants the ideas to be his ideas so now we have to word what he want him to do in such a manner that it is something he wants to do. So we get creative and patient!
I'm not sure how this will all work and I suppose that once he gets to school it will change again, I just wonder what sacrifices will ultimately be made or will we truly find something that works?

Time for change

I should have known that one try would never happen, it never has! LOL Everything that may work for my other kids, never works for Jack. A few weeks ago he was prescribed a medication for ADHD... I know you're shocked that he has it! The last couple of weeks we have had him on Vyvanse, which is a medication we use for 2 of our other kids. It worked to some extent. He finally wanted to learn. Before on his calendar he would put the educational stuff back in his basket and would only have on his calendar the fun stuff. Once he started taking the medicine he wanted to work. However, we lost something with this medicine. He was no longer funny, cute, and cuddly. He wanted to be left alone and was very unhappy. My little boy that would go visit everyone would no longer go without me being next to him. He began hitting his head with his fist as though something wasn't working right. Granted his appetite was suppressed, but nothing out of the ordinary and he slept fine, but his temperament and demeanor had changed. Luckily he has an awesome teacher that helps me to see what I can't because I am not there with him. She told me she would rather have the old Jack back then to see this boy the medicine has made. After this weekend I couldn't agree more!

So after talking with his Dr. we changed his medication and cut the dosage in half. I am hoping that it will help take the edge off his impulsivity but not lose who Jack is. He has set a precedent and people know what to expect, a huge hug and smile to greet you and a good laugh to leave you smiling long after he leaves. We will make sure this does not change, because it is what makes him who he is.

Sunday I took him off the medicine and a big huge shout out and hug to his buddy. She has been awesome trying to keep up with him! Today, day 2, off the medicine his teacher brought him to the car, wiped her forehead and went "whewww!" I laughed and said "forgot how energetic he was huh?" Yes he was a lot of work, but we got our loving little boy back...let's just hope this new medicine doesn't change him either!

They are growing

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?

Eliza's University Experience: Photos of Projects

Eliza's University Experience: Photos of Projects: " "

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!