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!

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.

Emotions

 I am currently working on a Master's degree in Curriculum and Instruction and with this class I have chosen to take my passion of creating an after school program for children with cognitive learning disabilities and research different topics to gain credibility with this new program. As I was researching I came across an article called Working with Families of Disabled Children in this article it helped describe the emotions of a parent who has a disabled child. It was so true I thought I would share so that you would have a small glimpse into a parent's heart.
Self-Blame/Mourning
"It has been reported in the psychological literature that the birth of a
handicapped child, or the acquisition of a handicap, precipitates a period of
mourning, much as the more familiar experience of death does. Stages of
mourning are identified as denial, anger, open grief, and, finally, resolution
and going on with life [Kubler-Ross 1969]. The assumption is that mourning
is time-limited; going on with life implies a once-and-for-all resolution. Onceand-
for-all solutions seem quite superficial when applied to the complex tasks
of parents of handicapped children. Parents often need continuing help to
understand their own idiosyncratic responses to their child's needs while they
are helped to meet the needs of the child. For example, each stage of the
child's life requires parents to reconsider expectations of performance and
adjust to them [Rappaport 1965]. As families move through the normal
experiences of life, parents have to reassess and reintegrate continually the
meaning of the handicap, for themselves and for the child. This, in turn,
suggests that mourning may be an indefinite process that consumes considerable
quantities of psychic energy. Moreover, if one has not come to terms
with self-blame resulting from having taken drugs or medication or smoking
while pregnant with the child, or whatever real or imagined self-badness or
weakness one believes may have contributed to the handicap, the energy
requirement may become overwhelming. The vagueness of the diagnosis of
learning disability reinforces parental fears. Each one of the imagined causes
mentioned above can be translated by the parents into a form of neglect on
their part. The quixotic persistence of learning disability reinforces the
chronic state of mourning, partly because of repeated hopes that arise with
spurts of accomplishment or creativity in scattered areas of the child's
functioning. Each hope is battered by subsequent failures in academic and
social spheres. The daily experience of parents may be described as a constant
process of adjusting to new, unpredictable realities. Whether these are hopeful
or hurtful experiences, the inability to predict behavior based upon normative
outcome expectations creates in the parents a sense of loss of control of their
lives."

Reference:
Vigilante, F. (1983). Working with Families of Learning Disabled Children. Child Welfare, 62(5), 429-36. Retrieved from ERIC database.

Easy Link

You always wonder is it really that easy? I'd like to say that the Easy Link is as cool and witty as the Easy Button, but I would by lying!! The Easy Link is a computer toy made by Fisher-Price. For those who have never seen it, it is a device that hooks up to your computer, the child puts one of the character that it comes with (in this case Elmo, Dragon Tales, and a dog) in the device and it links the child to a number of websites where they can play games, puzzles, etc. The child can choose to change their people or even go to another website by just a click of a button, but it will only go to the websites for that particular character. It is also password protected so the child can not get out of the Easy Link and delete or rearrange anything, let alone access sites that are not approved.

We bought this toy for Jack a few years ago thinking it would be something he was interested in, but it just wasn't the case, however the other kids enjoyed it. After we moved we still kept the toy thinking Jack would some day enjoy it. But everything fell by the wayside and I forgot all about it until we moved Jack into his own room. Again I put it aside thinking he still wasn't ready until I went into his classroom a couple of weeks ago.

While his teacher and I were writing his curriculum Jack sat quietly at the computer with his earphones on just as content as could be, then I saw she had the Easy Link. I asked her if he used it and she said yes. So I dusted the one we had off and plugged it in to the computer in his bedroom...A light came on, his face lit up and he continued to say "thank you momma!" Every day since he has gotten on the computer, plugged in his character and clicked away. Through this program I found out how much he loves puzzles! Though most of the puzzles are 9 piece puzzles, he still loves the challenge. He enjoys the ability to move around the websites and play what he wants without worry about exiting out of the program and getting frustrated. Not only does he love it, but the kids have found a new passion for it as well. Who knew something so small could make such a big difference! So it may not be the Easy Button for me, but it is definitely the Easy Link to fun and excitement for him!

An affirmation

In my struggle to know when, where, with whom, and if this is true, I saw this post on FB that gave me the courage to press on! Amazing how God uses the little things to speak to you!! Crossroads will be coming soon and I can't wait to see what comes from it and the people I will be blessed with to help make this work!

A Hopi Elder Speaks
"You have been telling the people that this is the Eleventh Hour, now you must go back and tell the people that this is the Hour. And there are things to be considered . . .

Where are you living?
What are you doing?
What are your relationships?
Are you in right relation?
Where is your water?
Know your garden.
It is time to speak your Truth.
Create your community.
Be good to each other.
And do not look outside yourself for the leader."

Then he clasped his hands together, smiled, and said, "This could be a good time!"

"There is a river flowing now very fast. It is so great and swift that there are those who will be afraid. They will try to hold on to the shore. They will feel they are torn apart and will suffer greatly.

"Know the river has its destination. The elders say we must let go of the shore, push off into the middle of the river, keep our eyes open, and our heads above water. And I say, see who is in there with you and celebrate. At this time in history, we are to take nothing personally, Least of all ourselves. For the moment that we do, our spiritual growth and journey comes to a halt.

"The time for the lone wolf is over. Gather yourselves! Banish the word struggle from you attitude and your vocabulary. All that we do now must be done in a sacred manner and in celebration.

"We are the ones we've been waiting for."

-- attributed to an unnamed Hopi elder
Hopi Nation
Oraibi, Arizona

A quandary

As we were having kids people would always ask me how many I wanted and my answer would always be 6! Now I know that many would be rolling their eyes or their jaw would drop at the mention of anything mote than 3 let alone 6! I have always wanted a big family considering I had just the opposite. What I failed to realize in my request for that many kids, was to be specific. Yes I have learned over the few years of raising kids that he has a sense of humor! So he decided to give me my 6 kiddos in 4. Like I said I never specified that I wanted 6 individual bodied children, just 6 kids.

If anyone has met my youngest you would understand that he is definitely 3 in 1! Now as I am looking at my family I question is this normal? So since I have never been around children with disabilities till J, I asked his teacher if his hummingbird like qualities were typical for him? To which she said NO! my understanding is that it is often difficult to get children with DS up and moving around, most of them are quite content just being... J is not this way, he is impulsive, busy, asks the same question over and over again, and most times defiant. Now when I think of J I think differently with him than I do with the other kids, it's necessary, but often I forget to step back and compare symptoms... Well because quite often it's never in our best interest to compare (which is a whole other post!). so once I took a step back I realized that most of the behaviors were behaviors I had seen before in my other kids who all have been diagnosed with either ADD or ADHD, which led me to make a decision to look further into this. After his teacher gave me her observation form I realized that we are dealing with the same thing.

Now I have never been a fan of medication, but to see what a positive effect it has had on my others, I am hoping it will have the same positive experience. But my concern is how will it change him??? Will he still be the same little man everyone loves? Will it change his behavior to the point where I don't see the boisterous little man everyone craves for hugs? Who know? All I know is that there has to be something that is a happy medium, one that will allow him to focus and still maintain the little happy go lucky man everyone loves and that hopefully we will no longer have to leave a place for fear of impulsive behaviors that warrant constant, grueling, exhausting watch over him. It will only be trial and error, but we'll find out more in a couple of weeks when we go see the doctor! So for now we are in a quandary as to our next step and how differently our future will look!

It's time to Fight the Good Fight!!

Since my last post school is well under way and for the past couple of weeks I have trying to figure out exactly how to post what has happened. Do I go for the helpless victim, the hurt avenger, or the noble optimist??? To be honest I have no idea how this will sound so expect all three! LOL

This year is Jackson's 2nd year in life skills and though I was disappointed in this particular route at first, I have been amazed at not only the most awesome teacher that he has, but what all he has learned in that class. I love him being where he is, his teacher loves to watch him problem solve and each day he amazes her with something whether is be a new saying or the way he can memorize peoples names in written form and regardless of what order they are in can say them correctly each time. This year he was big man on campus, not because he was the oldest but because he was seasoned in the routine and there were new students coming to the class. From what I understand Jackson has had a great beginning in class this year. He has become very tolerant of the new students in class as they play with "his" toys. He shows them around, helps them do different activities, very much a leader. I am so proud of him for seeing a need and helping those who are new it's a trait I have seen in all of my children. He has also not had any accidents during school, not that I'm surprised, but still after 3 months of being away I never know how he'll react, however, his classroom is his second home and his teacher is his 2nd mom and for that I am so thankful! Of course he loves to be able to eat pizza and corndogs, get on the bus (which is now not a chore getting him ready), and looks forward to his day!

Now I realize that my first paragraph and my second are in great conflict as the second paragraph does not portray any of the feelings that I mentioned...that happens now.

I am so glad that he has some consistency and a person that will fight for him when I am unable to. This year we chose to pull him out of daycare and put him in the after school program funded by United Way called Connections. At meet the teacher I signed him up and stated that he was special needs, they relayed that it was not a problem and that they had another child last year who was special needs. The program was 3/4 less a week and in the school which is a couple of blocks from my house. Though I know he had established relationships with his teachers at Day Care, I felt that the after school program would be something he could handle.

The first day was a nightmare! The program director was there, I had been called to come pick him up after less than 45 minutes of him being there. The main worker had been overwhelmed by Jack along with the other 2 ladies that work at Connections. They had stated that they were not prepared for him, blah, blah, blah. M (who is the lady in charge at Connections) stated that she has had a lot of stress over the past month dealing with a mild stroke she had plus she also had 4 children of her own. (insert huge eye roll here!) They said they would give him a couple of weeks to give him time to settle in...to which I stated that it would take a "typical child" a couple of weeks to settle in and that it would be impossible to put a time limit on him! It was almost as if they were just waiting for him to fail so they could find a reason to kick him out of the program. So I told them that I would help them in anyway I could and that Jack's teacher also did not mind helping to understand behaviors and give pointers as she brought him in. They were happy we wanted to help them.

Day 2 - Called again to come pick him up because he had messed himself. They stated that they were not allowed to touch the children and therefore couldn't help him! They also told me that it took all 3 of them to handle him. Now let me just say for the record that at no time has it ever taken 3 people to take care of Jack and as a matter of fact I have had a high schooler that Jack did not know take care of him and his 3 siblings for 8 hours a day for 3 days with no problem! Moving on....I told them I would supply them with toys for Jack to play with so he would be distracted and hopefully would begin to settle down. After that cold conversation (the chill coming from them) I took Jack home completely dirty.

Day 3 & 4 By this time I had enough of the excuses. Every day so far Jack's teacher had been coming with him and staying for at least 15 minutes after school to help explain things to the ladies, to get them to understand that speaking to Jackson is different than speaking to other children when you need him to do something. It is necessary to speak in direct statements than to use excessive fluff. For example, to most children you would say "I need you to pick up the toys so that other children will not step on them" that is considered fluff. What Jack hears during this time is similar to the teacher of Charlie Brown "wah, wah, wah wah, wah wahwah, wah. When needs to be said is "Jack pick up your toys, clean up, clean up" as you are singing the song and he sings with you. His feelings do not get hurt when you are short and firm with him, it's what he responds to effectively. So after seeing that he was being pushed to the side (as a brush off) and after hearing M complain once again about Jack's behavior and her stress level I went off! I simply stated, don't tell me about stress! I have 72 students in my class of which 20 students have failed their TAKS test and I have 7 months to bring them up to level and pass their test. I am also a mother of 4 with 3 children who have ADD or ADHD. I also am in the middle of my 2nd master's degree of Curriculum and Instruction and was in car accident almost 2 years ago from which I am still having pain...so don't tell me YOU are STRESSED!! I also proceeded to call the program director and explain what had happened and that if she was so stressed, maybe this was not the job for her. The director explained that she would bring her in and speak with her and let her know that this situation will work and if she wasn't on board she needed to find another job.

Day 5 was awesome! The program director was there, playing with Jack and his toys, no messes in his pants and the attitudes of the ladies had begun to improve it was a great way to begin a weekend! Then the next week came!
Jack's teacher began to notice the distance between the ladies and Jack. She noticed that they really didn't want him there almost as if they were waiting for someone to give up and have Jack leave. This attitude has yet to leave! However, one of the ladies, who is a college student, began to step up. She made Jack a chart to let Jack know how everything would happen and even put Jack's Toy Story toys on the chart when it was play time. I was excited that she would do this for him. With all the resistance we had seen is was a complete change of heart from her. They began to connect and throughout the week he would get closer to her as she played with him. Once again he had an accident, which after last week I had given them written permission to change him, however Jack would not allow them to touch him. Now it is important to understand that a special needs child can see to the very heart of your soul! They can read people better than anyone I have ever seen. They can tell a fake and this will be expressed by ignoring a person, disrespecting them or not allowing to touch the child. Once the child has figured out a person it is very difficult for them to change their mind. A soul is a very complicated area to change and they know that so they are very leary until it is very obvious something has changed. He has found that this is true for the other 2 ladies and for the one he plays with he knows he can walk all over her and now that he has figured that out, she'll never be able to control him! It's kind of like training a dog...now I know what you're thinking, he's not a dog, how could I ever compare?
Well with my explanation, hopefully you'll see the similarities. When my eldest son tried to train his dog, he did not have the commanding voice when speaking with her, so she treated him like another dog and she jumps on him, plays with him, and basically walks all over him, she just will not listen to him. When my husband or myself begins to speak to her we command automatic attention. Our voices state that we are serious and when we tell her to do something she knows we mean business. The same type of tone is also necessary for Jack. If you can not use your parent voice to tell him to do something and simply don't have the balls (for lack of a better term) to talk to him in such a manner, he knows you are not serious and will not listen to you regardless of how mad you get. If the voice does not change, then neither will he. (I'm sure I have not explained this well enough, but hopefully you get the idea.) This happened last year too, but luckily there was one with a parent voice to stop him.

So last week we realized that they were feeding him apple juice which was a huge no no as it a food allergy for him. Therefore prompting me to print out his 5 page bio so they would know what to do and what to feed him, which I have also since given to several other people so they can begin to understand. He had also hit one of the ladies on the head (which is not a big deal considering he still can not communicate effectively verbally) He didn't knock her out, he was just frustrated and considering she has been giving me "tude" I was kinda glad that it happened...but I digress! So by the end of the week, I was speaking with the lady who was shadowing him and she stated that things were getting better and I wanted her to know that we were there for her if she needed anything and to write things down so we could better educate her! On Thursday or Friday, I decided to call the program director to see if she had found some training for the ladies so they could take care of him more effectively. She said that she had not and that their was no funding for training, so unless it was free, it wouldn't happen. She also went on to say that Jack is really stressing out the staff and that this may not be the best program for him. She said that they would give in another week or so, but that something really needed to change. I was floored!! I couldn't believe this was coming out of her mouth. It was less than a week ago that she said that this will work, she was in complete support of this happening and now it wasn't a good fit? She also stated that she was getting complaints from other parents because Jack had pushed another child...of course I have no idea of what the other child did, but I guess that's irrelevant. She also stated that he was taking away from the other children. I told her I would think about everything that was said and talk to her next week. So you know what I did right????

I did what any fighting parent would do and contacted a lawyer! How can a program funded by the state and United Way discriminate against a special needs child? It was my understanding that anything held in a public place and funded by the government was open for any and EVERY child? I thought it was THEIR job to make sure they were trained for this particular challenge? As a teacher it is my job to change how I teach the lesson so that it will include all of my children regardless of the ability...so why is this not the same for them? It is my understanding that they are also to provide lesson plans every day to show how they "take care" of the kids...if this is true, then it would include them sitting on the butts and not doing a blessed thing and that Jack has actually made them work to earn their paycheck! Why can't people understand that not everyone works inside the box, that sometimes you have to think outside the box to grab those who think differently regardless of ability? Why don't people see children with special needs as an opportunity grow and be better than who they were before? Why don't they see the potential these children have? Do you not see the smile on Jack's face, do you not yourself find a smile on your face when he leaves? Why is keeping him for an hour so impossible??? Now let me say that my reasons for contacting a lawyer is to see what exactly Jack's rights are and if they are being violated. It is my hope that things will change, training will be made available and that the ladies will learn to adapt to Jack making this situation a successful one and thus making a breakthrough to open doors for other children like Jack. But I am also willing to fight further if necessary, but I'm hoping we will not go there!

Which now leads my to expressing my Next step. At our church we have something called our next step, which in a nut shell promotes us to be outward focused instead of inward. For a long time I have tried to figure out what that was and after July it came to me. It was like a bolt of lightening, a revelation of what my next step was going to be. For the past 4 years I have worked in a school that has everything fighting against it. Children coming in completely unprepared and yet we as teachers begin to fight before they even set foot inside the doors ready and willing to take whatever we are given and ensuring that our children will be successful that they will see we never give up and will never give up on them because they are our future! We band together to provide the best education for our babies and we rally in success at the end of the year. If it hadn't been for this school I would never fully understand how to fight. How to never give up even when it looks bleak and to be able to celebrate and cheer in all the success they have accomplished and see how they come back and thank you for helping be the best they can be. So after July and seeing the ignorance first hand in an area of my life that I thought it would never exist I decided it was time to do something about it!

So as my next step I plan to open an after school program for special needs kids. I got the idea from an after school program in San Antonio called Eva's Heroes. After looking into it and seeing the need I knew this was something I had to do...it was something I needed Jack to have. After speaking with a friend of mine and seeing the excitement in her eyes I knew I had another partner in crime...my first partner being my husband. I had tossed around a few names of which had never really wow'd me or my other PIC's (partners in crime), however after Jack's first week in the after school program I spoke with my friend J who I knew would understand what I was going through and told her I was at a crossroads...to which she said...that's it...that's the name! So after the chills calmed down on my arms I realized it was the name! Sometimes it is necessary to go through what we have been through to be able to truly see what we are up against and what so many others fight daily. So CROSSROADS will be the name of the after school program that will promote relationships between special needs children and typical children that will be geared to the individual. It will be something that will help prepare our children for being a fruitful part of society. We will work with other businesses to put our kids in a job that will provide benefits for the child and will educate the business to help change how they do things to benefit their new hire. It is my hopes that we will be able to benefit elementary through high school  and beyond. It is my hope that we can train our older children to become independent, learn to cook, apply for a job and keep a job. It is my hope that Crossroads will be a positive force in our society where we can help break barriers against disabilities and see effective change that allows our children to have a voice! I know that everything happens for a reason. I know I am a fighter...I've known that for many years! I have also realized that there is a reason for this...Jack! My husband said that if there was something I could ever give to my kids it would be my strength...I couldn't help but laugh because there are many times in which I do not feel that strong, however I do know that nothing will ever stop me from doing what is right! I always fight for what I want and 99% of the time I win, which in this case is a good thing. So many times I have fallen apart, questioning why me, and many times it is always done in the privacy of me myself and I because I quickly begin to suck it up and realize that though it feels good to let go and realize I can not do this alone, I also realize that so many depend on what I do and therefore it is also important that I not wallow in what will never be, but plan for what will be and the greatness of that future. To know that this program will help so many kids, to know that their parents will have the piece of mind that their children are safe, provided for, and loved it what I look toward. To be able to provide care for these children at little to no-cost to the parent who provides substantial monetary expenses for all the other daily needs and understand we are here for them. To provide peace, understanding, and education to a better future that is what keeps me going!

So this after school business that we are fighting against to open the doors for other children with special needs is only the beginning of the break through you will see from us! We will not go quiet, for if God is for us, who can ever stand against us!

A Life of Contridictions

It's funny how I go on about what happens and explain what Jackson can not do only to find myself eating my words only a week or so later! I enjoy being able to eat my words when talking about Jackson because I know he's growing and surpassing milestones I was not ready for him to achieve. My last post I spoke about how potty training was not going to well and that he had regressed. Well of course not a week later it all picked back up again. He even took it a step further and went to the bathroom #1 and #2 all by himself, while the babysitter was at the house. This may not sound like a big deal, but when I am not home Jackson does not go #2...he waits for me (I feel so special!), he also does not tell the sitter when he has to go....but this last week was different! Accidents were a rarity! We went from 2-3 accidents a day to maybe 2 a week, I am so proud!!

Now we are approaching school, it's tomorrow. The beginning of school has never been easy. I'm not sad to see him go, because I know he loves his class! My concern is that he does not feel stressed because it does affect his bowl control which we have seen the past 2 years. My hope is that this year he will feel more comfortable in his surroundings and that everything will remain constant. His after school program will change and he will be staying at school until I can pick him up. I hope that this is a good thing, that he will stay where he is supposed to without running off and that the care takers will be excited to see him rather than worry or fearful that he exists in their program. This is something that I always fear. So many people do not know how or don't care to know how to care for him. It's not hard, it is no different than any other child with the exception that he can not vocalize all of his needs which manifest itself as doing before processing what should be done. We are in a predicament after school simply because since we are paying for child care, the provider can refuse to take him, they are not bound to keep him....so I spend a year holding my breath in hopes that he will do as requested and they will continue to welcome him!

I never thought this would be me. I never thought I would have to fight day in and day out for my son to be recognized in a society that I see still greatly discriminates and segregates. I never thought my child would be one that people could not love unconditionally and want to know and be apart of his life...but this is the life that I lead, this is the fight I take up every day! It is an exhausting battle, but as long as I see that he is thriving and learning, then I will continue my fight without compromise!

It's never easy!

Sometimes I wonder if it is really worth the routine...the continual routine that happens day in and day out and never changes for fear of something becoming unbalanced? Had it been with any of the other kids I would say I need to relax a little, let somethings go, get out more and try new experiences! I would have rolled my eyes, called myself a stick in the mud...til I had Jack!
It amazes me how much unchanging routine is so important to the balance of his life. He has a set routine for night time that only he allows me to do with him. He has certain rituals that must be completed in the morning like having his milk (his coffee) before he will hug anyone at school. For church he must sing songs in big church before going to his class, which also includes donuts and water. If any of this changes format it is grounds for mental meltdowns depending on the day. Some days he is okay with the small changes, others it's fall to the floor refusal of cooperation
For the most part my kids are easy going, but like to know how long they'll be gone so they can get their important things to snuggle with. Jackson is always on the go...he always wants to go somewhere and asks "uanna go?" over and over again and sometimes with shoes in hand. Though he has grand aspirations of going everywhere, he can't afford it...and quite honestly it wears me out!
So this summer (actually a couple of weeks before summer started) we began potty training. This was all Jackson's idea (you can ask his teacher!) which began by stealing a little boys underwear from the bathroom and requesting that he have them on. (I know, I was rolling when his teacher called me!) So I was okay about this. After 4 kids I knew this was something not to be rushed and with Jackson I never know what to expect, but I was ready. He did great! He stayed dry minus going #2, but I was happy with that and figured 1 step at a time. Then he began to stay dry overnight, which really floored me because all the other kids took a couple of years to be dry all night, but my little man decided all at once to stay dry during the day and at night...we just needed to find out how to catch him before #2! By the first part of July I figured out the routine enough to catch him and it was going great! We had been accident free for almost 3 weeks, then we went out of town.
Now typically when we go out of town I become more in-tuned to my children and can figure out their potty needs when they were potty training, with Jack it was not that easy. He was surrounded by nature (which is his favorite, most relaxing thing in the world) and I was sunk. It went downhill from there. I don't know if I was just exhausted from all the travel, surely our routine went back to normal when we got back??
So our great accident free status went from several days to several minutes or hours. It's like starting from square one...AGAIN!!
This is very disheartening for me...I don't consider it a setback, just a reoccurring learning process. He is still dry at night, and for the most part dry during the day...but that dreaded #2 will be the death of me. I was so hoping to share with his teach all the progress he's made over the summer and with all that time he would have solidified a routine that he could take with him to school and I could tell his teacher what to expect, but this will not happen this summer. He has made a lot of progress in his speech (I think) and in some degree with the loss of his first tooth has matured. But the dreaded training saga continues! The reason it disheartens me is because I so long for him to be independent, I strive for that with all my kids, it's very important to me that they are successful all on their own so they see what they are made of.
I know that this too shall pass and I know that this will be a small blimp on his screen of accomplishments and considering when he started he's come a long way in a short time. I get it, I completely understand that is will take time and probably a year from now I'll be laughing at all of this! But now I question whether or not it is worth going away on vacation, when should be attempted again, what changes are to be made? Will it be like this all the time or is it this particular concept that is more difficult to accomplish??? I don't know the answers to this and no one else can tell me either because each child is different...it's never easy, only different, more creative, more involved....just never easy!

Diet Restrictions???? Oh yes, I think so!!

Jackson has been a very healthy boy...he breastfed until he was 6 months (which is a small miracle), we were told by his Nutritionist that he needed to be on Soy milk because children with Down Syndrome can not digest the vitamins and such in cow's milk....so he drinks soy. Over the past couple of years we have gained more knowledge into the effects of food on his tummy. Now granted, he will eat EVERYTHING!! If you have seen him you'll know he doesn't miss a meal...not because he's fat, but because he's solid! Anyway, through trial and error we have found out a few things:

1. He can not eat any fruit that is acidic...so no oranges, no pineapple, no apples, no grapes
              - however, he can eat 1 individual portion of applesauce or 1 individual portion of mandarin oranges. He can also eat raisins and prefers yogurt covered! Never more than 1 a day (or else the side effects are not worth it!!) such side effects include days of loss bowel movements (most times uncontrollable)
2. He can not eat fruit snacks...because they do the same thing as #1!
3. He can not eat a lot of refined sugar or he becomes very hyper and aggressive...when he gets this way it is very difficult for him to settle down.
4. Everything in moderation! Chips, raisins, etc must be put in a bowl, so he understands that when it is done, that is all! (it doesn't stop him from asking for more, but does stop the mindless munching.
5. We also have to monitor the stress in his life such as starting school, new situations, etc and change his diet accordingly because it does affect his digestion.
6. He typically drinks soy milk or water and prefers water...however he also enjoys Root Beer and Sprite when we are out and about. No Capri Suns, or juice for the same reason as #1!!!!!

The boy will eat in constant! His favorite foods are Pizza, Corndogs, Pancakes, Yogurt covered raisins, and cheese balls...to name a few.

I say all of this so you understand his eating routine and to prepare you for the story I am about to tell. This evening we went to a party that was filled with all different types of sweets: Cakes, brownies, cookies, fruit, punch, etc. Not only was there a variety of food, but it was also at the perfect height for Jackson to reach easy. Since it was a special occasion I decided to let Jackson have his choice of a couple of dessert where he ate almost all of it, but also devoured a delicious sugar cookie from Kroger ( you know the one with icing on top that you just can't get enough of it's yummy goodness because it calls you to that calm....but I digress. So for the most part he did good (I think, but I wasn't watching all the time...oh yeah you know what's going to happen!) So the next thing I know he has fruit punch, not a problem, we can try it, a couple of sips won't hurt right???WRONG!
After about 20 minutes he had had enough, he'd gone to the bathroom, he washed his blue hands and face from the sugar cookie and all of the sudden a burst of energy began to take place. Now I'm sure that onlookers were in awe and wonder in his energy because he does command an audience. His brother was also available so I had to make a decision. I could hold on to him, get kicked begin to yell because he won't calm down making a scene or I could take him to a clear area in the room and let him run it out....so I told Zachary to take him and run him ragged! So he did just that, they ran around the tables, they ran around chairs (well mainly Jackson). Remember how I said Jackson becomes hyper and aggressive...well once the running was too much for Jack he then proceeded to take Zachary to the floor, when that was not very successful, Jackson then chose to fall on the floor himself and loving every minute of it. I figured as long as he wasn't hurting anyone, then better he get it out now, than to deal with it in confined spaces...well after about 30 minutes we chose to leave, his movement was getting to be too much and we needed to do other things. Once we got home, he got into the shower all riled up, luckily the shower settled him down a little, but it took another 45 minutes for him to completely calm down enough to watch a movie. After it was over he began on last segment and moved from couch, to chair, to chair and pretended to sleep...Little stinker!

He is a ball of energy without the extra sugar, therefore this is why we limit his intake of certain foods and beverages....In all of this I can safely say that bed time is never a problem! After getting ready, brushing teeth, and getting him Mickey Mouse and blankie, it takes him no time at all to fall asleep as I read him a book. He sleeps well (10+ hours) every night and is ready in the morning to take on the world!! Never a dull moment with this little man!

Breakthrough

When Jack was an infant his (Occupational Therapist) OT would tell me that children with Down's Syndrome have learning plateaus. All the sudden you'll see a ton happen in a short period of time, then they plateau and ya never know how long that will last. Well for me (being who I am) I don't like the word plateau because in my opinion it means nothing is happening...In the stock market if a company plateaus they are just doing their best to survive. For Jackson he doesn't plateau (in that sense) I call it observation mode. I don't ever know how long his observation mode will last, sometimes it's a couple of weeks, sometimes 6 months or even longer. Needless to say it's a patience builder!! My expectations for his achievements have not changed, I just know that they will be in his time as he sees fit all I can do is wait and marvel in celebration once he accomplishes something (anything).

With that said I will share what happened yesterday. Last night as we were preparing for bed Jack asked for his hair to be cut. The words were a little garbled so it was not completely clear, but wasn't sure if he said what I thought he said. However, once I looked at his hands, I realized that he wanted his hair cut. HE WANTED his hair cut!! You have no idea how big this is!!! Since Jackson was about 6 months old I have been cutting his hair, well more like buzzing his hair. He's a high and tight kinda kid, I find that it doesn't exasperate his features as much, plus he's very warm natured and he would be dripping in sweat if his hair were long (more than an inch). EVERY time we cut his hair it was utterly draining! Once he was able to sit in his bumbo chair (around 15 months old) he would scream bloody murder, cover his head with his arms, and wiggle around. This haircut would last anywhere from 30 to 45 minutes that should only take at most 10 minutes. I would dread cutting his hair trying to hold his arms and use the clippers. Not to mention trying to get close around his ears. I always got it done, but knew it would be only too soon before I would have to cut it again.

As Jackson has aged it has not gotten much easier. Though now he sits on a bar stool and can watch tv, the mere vibration on his head just sends him through the roof. His hypersensitivity issues go into full effect and he is crying and screaming, holding his ears, telling me he's done and almost to the point of hyper-ventilation. I try to cut his hair about every couple of months (maybe 4-6 weeks). The first haircut of this summer was not so bad, the crying and screaming had subsided, but the arms were still causing trouble along with the constant  "done momma" after every blade change. I was hoping to go another couple of weeks (right before school started) to cut his hair, but last night after playing around with his siblings Jack wanted his hair cut...maybe because he was tired of sweating??? I have no idea what spurred it on. Since it was late, I told him we would cut his hair tomorrow....after a battle of  Jack:"haircut", Me "no, tomorrow," I finally won. So this morning I asked if he still wanted his haircut and he said yes. I had no expectations in this venture. I assumed he would do the same old thing even though he wanted it. So I moved the barstool close to the TV so he could watch while I cut. I put the cape around him so the hair would not get all over him (another thing that sends him into a tail spin), and began to cut. Though around the ears was a little difficult, we managed to finish his hair in under 10 minutes, no tears, no screaming (by either party). He then preceeded to show Zachary his haircut and wanted to show his papa but he was at work. He took a shower (which is one of his favorite things to do)....and all is well in Jackson's world!!

Amazing breakthrough! Now it may not have been amazing for any other typical kid, but when you go through several years of struggling and all of the sudden the struggle is gone you can't help but celebrate!! Not only did he want his hair cut, he was able to express through WORDS and hand signals what he wanted! I'm so proud of my little man and so thankful for him. It is through him I am able to appreciate the little moments that I would not have been queued to see if it were not for him.

We have definitely been in observation mode the past 6 years with this particular event. He's watched both brother and father get their hair cut and watched how they acted and what they did and finally decided he could do that too!

In a nut shell

To bring all that has been said to the blog, I will merely paste what began this journey into the looking glass!

Did u know that children with DS are strong-willed?you'd know if you've met jack. One way to combat that and hone his craft is to have strong-willed parents who will fight back with him and fight for him...a strong-willed teacher is also a necessity to have because he knows what buttons to push and has no prob pushing them!

Jackson can...unload the dishwasher (assisted), put away groceries, put laundry in and out of the washing machine and dryer, cooks and bakes with mom, tidies up toys in his room and can set the table....all requiring dexterity. Still working on the bi-lateral movement and stability to enable him to make the bed...his glasses should help too! 

Jackson's favorite part...aside from baking is putting away silverware...taking out the silverware from the dishwasher and separating each one according to what they are. It not only show him structure but allows him to learn his eating utensils.

Dexterity is something that Jackson has not mastered yet. He can not dress himself fully without help, he often doesn't realize what his hands or body is doing and does not have motor memory sequences yet. All this must be achieved before he can fold laundry, make a bed, put on socks, etc. Amazing all the little things... is takes to make a movement that seems so simple!

Did you know that in order to do household chores, dress yourself, eat, drink, and other activities you must have 3 basics: Stability of body and arms, Bi-lateral coordination (hands work together), and sensation (sensory awareness or body and hand position, motor memory of sequences)...which is the building block for dexterity!

Did you know that using an easel can help with pre-writing skills? It helps develop hand-eye coordination, muscle tone, and stabilizes shoulders.

Did you know that children with DS have low muscle tone?

Children with DS have a slowed nervous system, so sensory development in the hands will also be slower. This also means that it will take time for Jack to process how heavy something is or the force in which they grab it.

"God knows more about what you need than you know of what you don't want. Look beyond the pain to see the promise."

Over the past week I have given you some glimpses into our world with Jack...Here is more you don't know: His reading comprehension is of his age level. Please know he can not read, doesn't know the alphabet or numbers, but if a book is read to him he can point with pictures to assist what happened in the book! (more to follow)

According to jacks testing, his math reasoning is that of a 2yo 8th month

Actually the majority of his skills are between a 2-3yo... This includes but not limited to needing to have assistance drawing a circle, cutting paper, getting dressed.

So I have 2yo in a 6yo body...granted he can do many things, but to put an age to it that's where we are!

Today Jackson's animals have to go potty

It's funny because he says it and I think it's him...he is quick to tell me "no dis one" and holds up whichever animal he is conversing with. This is new!!

Today Jackson has started playing with stuffed animals he's had on his bed for years!! All the sudden he's spatially aware and found something bigger than his small block people.

Ah another new phrase uttered by jack "ur mean Anna!" or "ur mean to me Anna!"

Good food for Jack is followed by "mungy, mungy, mungy" (or yummy, yummy, yummy)

 

Confucius says “Real knowledge is to know the extent of one's ignorance.”

“The little I know I owe to my ignorance.” Sasha Guitry

Sometimes you can only sit back and admire the thought processes of a special needs child!

Jackson will continually ask for something he wants until he is satisfied with the result. This is no different from anyone else except he may not understand the reasons as to why it is not exactly what he asked for and typically comes with a meltdown while I am frantically looking for something to distract him.

Though Jackson is 6 he has not mastered the form of playing with people...he'll play next too, but will not connect with someone. However, if I play the voice of his Mickey Mouse or other play figure, he will play that way.

Last night I listened to Jackson playing with his Shrek and construction worker. Shrek was constantly belching and the construction working kept saying Shrek's name. I enjoy listening to the conversations he has with his people...it allows me to see what he hears.

Jackson's new phrase is "weve me alone" (leave me alone)...now I just wish I could deprogram the phrase "shut-up" he uses frequently either as something to say or because he wants you to do it.

Did u know that I make my bed 15-20 times a day because jack loves to snuggle in it and watch tv? Though I've tried to keep him above covers he insist on going inside, must be the way they feel against his skin...could b the pressure that he needs to help him be still??? I do not know.

Is getting ready to watch Ah force (according to Jack) with his right hand raised high with a fist....which is "G-Force".

If I need Jackson to do something and he does not comply directly (or within a few seconds because response time is a little slower) then you'll hear me cound DOWN from 3 to 1. After 1 you'll see me pause and begin to raise my hand, you'll also begin to see Jackson comply because he knows the cause and effect of his behavior...he's seen the effect.

Did you know that when Jackson hits or kisses or slaps, it may feel hard to you, but it's like a feather touching him. Sensory learning is necessary for him. He needs to know that it was hard, he must also know the correct way to touch. So if he is doing something too hard, let him know and show him how it should be done, then let him try and praise him immensely for how he did! It makes a difference!!

Jackson is currently learning how to use a GameBoy to play Strawberry Shortcake...Doing well, but asking for help

Did you know that for the most part Jackson will try to do EVERYTHING on his own...it may not be fast, it may not be perfect, but it is done BY HIM. If he can't do it, he'll sign and say I got it. Show him once and he'll want to do it himself...he's very independent, you just have to lose the idea of perfection and fast!!

Jackson's new word: game and it is clear!

Did you know that if you want Jackson to do something it has to be direct without fluff? He doesn't understand and gets lost in the extra wording that many of us feel is necessary.

Did you know that by merely making picture charts (similar to a to-do list) that he can mark off helps with his meltdowns? Did you know that by cupping your hands on the sides of his eyes like blinders on a horse and speaking to him so he only sees your eyes and face he will comply, but it will not be instant like most "typical" kids.

Did you know it takes several months for Jackson to commit something into routine? Did you know that any variation of this routine could begin a talespin of meltdowns causing hitting, yelling, laying listless on the floor, defiance and many other type of episodes that he doesn't know how to control?

Jackson does not like car washes nor does he like driving in the rain...hes yellin at the rain now!

Jackson is still trying to understand the automatic towel dispenser and the fact he doesn't have to continue to tear every time something comes out.

today the word of the day is awesome this is brought to u by jack who thinks everything is awesome!

Life
shrinks or expands in proportion to one's courage. - Anais Nin

we've been working with jack on keeping his glasses on and have found sensitivity issues, luckily one pair are light enough to distract him, the other pair I'm still working on, however the band around his neck was pointless!

Realized how much i loved holding my children when they were infants but do not like holding others because of the memories from my last...ground breaking! then laughed at the idea that they remind me of Perry the platypus, they don't do much!

did u know that jack only eats with a spoon because of the dexterity it takes to use a fork? do u know how much muscle, dexterity, and thought it takes to use a fork?

have u ever crossed paths with a child of special needs and caught yourself smiling because of how they made u feel or what they did to take your mind off life? have u ever wondered if u have the same effect on others??

have u ever watched a child with special needs during a worship service and feel as though they have a greater connection with god? have u ever asked why they were uninhibited?

did u know that most special needs children do not learn their abc's or how to read the same way other children do?

the best thing about parents with special needs children is their outlook on life, have u ever asked them their perspective or are u not willing to step out of ur box?

parents with children who have disabilities are mentally and physically worn out 24/7 and still try to maintain a life...how will u help them to refresh, regroup, and feel a part of something? or r u willing to accept ignorance is bliss statement and sleep well?

u can not know if u do not ask...u can not b better if u don't strive to change...u can not have compassion if your heart is closed an unwilling for life change and honesty.

when someone has cancer, you find everything out about it, to understand what a person is going through, yet a person has a special needs child and the situation is like a plague instead of an educational process i don't get....do we not deserve the same compassion as those with cancer???