Monday, November 8, 2010
Inspiration
Yesterday we were watching "The Kirate Kid" during our family movie night and in that movie was a great quote: "Breakthroughs happen because someone is scared to death to stop trying!"
We live in a small community, which many say is almost perfect. This can be seen by the lack of police beat that is published in the newspaper in comparison to the surrounding cities. In our community it's about the type of clothes worn, the cars driven and the amount of kids, not to mention how long and how many ties are within either by blood or through years of living in the area. This is just like every other community I'm sure.
What is not seen are the wives and mothers who are lonely because their husbands are at work to continue the lifestyle they have become accustomed to living. The families who struggle to make ends meet because of tragedy or lack of knowledge and focus. Most importantly are the families who have kiddos with special needs.
It's time for a change! In order for change to happen their must be a shift in thinking. Our special kids need to be seen within the community of their peers, their families need to know they are supported and loved because in most incidences the families feel alone and unsupported. We (my husband and I) have already begun to create that shift.
Many ideas have already been thought up and started. Our plans will take time. For right now I will continue to pray that when the time comes, people will be open to the ideas and be willing participants because God has stirred something within them. Currently, the only thing available for our kids outside of school is the baseball team. Our plans within the next 3 years will involve creating a place within the sports arena so that everyone has an opportunity to participate in every sport.
To help jump start our dream we (hubby and I) have begun to spread our wings so that j can fly independently. At our church our population has grown with children of special needs and it is now important to fertilize it and watch it grow. This idea was jump started by another mother but due to the age of her infant and needs of her child she could no longer continue the journey. In order to make sure her ideas and passion didn't fall by the wayside my hubby and I chose to take what she started and move forward so that one day she too could enjoy the benefits she awarded us! This is by no means an easy task, but considering we are further along in our journey than this mom with a passion, it was necessary!
At the beginning of the year we will begin our voyage into the special education field. At this point I am learning to write the curriculum for my son and it is my hope that in January I will be able to begin writing curriculum for all our kids, have a place for them to go, and provide training so that our volunteers can feel confident. We also plan on setting up a support group for our families so they do not get lost in everything. It is so important that people understand and have a heart for our children who so often cannot communicate their needs. It is also VERY important that these parents have a voice and are not forgotten because in all honesty they live closer to God than anyone can ever hope to!
As the parents of special needs children we are in continual prayer for patience and guidance. We are continually looking to Him to direct our paths, lead people to us who we can talk to, support, lean-on, and also befriend our child who wouldn't otherwise have a friend! Every day we look at the face of God through our special children and wonder what we will be taught and how they will amaze us! Yet so many times we have no voice because our children often have broken down before the eyes of many and we are judged because of what we may or may not do, how we parent them, and the style in which it's done. So often it feels as though no one cares and this will no longer take place! No one should have to feel dismissed and/or worthless! To make sure this no longer happens our journey will continue because we are scared to death to stop trying!
We will begin to partner with community organizations to raise awareness in our community, train local businesses to create jobs for our kids as well as train the kids/adults on their new positions. We will change the way people think about our kids, so that our kids will have the life they deserve.
It is my hope that one day we can look back and be amazed at how far we've come and what our children can now do. I hope that I will find others with the same inspiration who I can work with to make our vision and passion come true.
Saturday, October 30, 2010
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.
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.
Thursday, October 28, 2010
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!
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.
Sunday, October 24, 2010
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 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
Saturday, October 23, 2010
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!
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!
Sunday, September 5, 2010
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!
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!
Sunday, August 22, 2010
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!
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!
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