The Day After:... THE MELT
Many people have NO idea what Autism is and what it is like to live with a child or a family member that has it.
I can say that Xavier has come a LOOONG way from where he started and
will continue to get better as we wont ever give up on that.
There
was a time here in the last two years where Xavier was having these
types of meltdowns 32 times a month...Yes, He was DOUBLING UP ON us some
days..
But with some very special people: His teacher at the
time,a wonderful behavioral specialist for the school system and the
staff at the Marcus Institute, when he left elementary school he was
down to about 2 a month.
Currently, he may have these every few
months. I think the last time was with Daddy and Jordan at a Flea
Market about 6 months ago.
Before when Xavier would have these types of meltdowns, he come after
whoever is keeping him from his "desired item" and on yesterday ' that
person would have been me"..
But for some reason even in his most frustrated state. He would NOT HIT Me..?
I was ready for it. Was ready to do what I learned to block the blows.
Because unlike two years ago when I took training.. He now LOOKS at me EYE TO EYE and I am sure outweighs me as well.
He is stronger than an ox like his daddy!
The bruises I got was from trying my best to get him into a CPI hold on
yesterday to walk him out the store and I have to tell you it was like
he was playing with a rag doll! ...
But I also know he even in that
moment in what seemed like TOTAL LOSS OF CONTROL, he was understanding
that he was upset, but did not want to hurt me and for that alone. I
praise God...
I feel the more people are educated, the better all of us will be.
I am blessed to have worked for STEP, Inc and learned so much from Jenness Roth, Jawanda Barnett Mast and Laurel Quinlan Ryan
and a host of others about training and help for Xavier while being
able to educate other parents on IDEA and how to get a better education
for their children through public schools as most Middle Class families
have to send their children to Public school.
Even more, most Middle class families can not afford the Medical, Educational and General Care costs for a child with Autism.
The Hunter School was mentioned in an earlier post and I am asking each
of you to contact them and ask about their tuition costs per year at
admissions@hunterschool.org.
I am going to caution you beforehand and tell you the cost per year is about the same amount as a small house in Georgia,
around 120, 000 a year. What family can afford that?
Plus with all the HORROR stories you hear each day about children who
are sent to school and come back home each day being abused,
physically, and sexually who wants to send their child away.
Especially if they have very little language to "tell" like Xavier.
Yet, with this post I am hoping to get others thinking so that when
they see a family dealing with this in the mall, movie theater or even
CHURCH, they will have a sympathetic and not a Judgemental heart.
I also wanted to give the REAL side of Autism because often when
Advertisers or Autism Groups show people with it, They usually show
people with Aspergers.
In my opinion, although people with
Aspergers do have many challenges, it is because it is a "more"
Acceptable" form of Autism and more easy to show the public ....
Yet, the majority of people living with Autism are Moderate or Severe.
By Autism scales, Xavier is considered Moderate, he is potty trained,
he has some language, he can dress, bathe, and does his own Daily care,
brushing teeth, etc. He can clean his own room, Vacuum better than his
older brother and can now this year can now make his own bed.
He can sit in church and remain quiet and even attend Sunday school with mom and dad.
But that is with MANY HOURS put into him from his parents and teachers in Public school.
With that being said: what do we do in our own home when Xavier has a melt down like this?
First he gets disciplined: YEP, nobody escapes that in the this household!
Daddy dont PLAY THAT! ....LOL!
But on a level he can understand..
First:
He lost his computer privilege for yesterday.
The Game we went to pick up at Walmart, he cant play till tomorrow either.
But only if he has good behavior at church.
And yes, like a typical child, he was NOT Happy.
But we have to show him that although this is something he cant change (
he will always have Autism) He behavior is not appropriate in the world
we live in.
For many kids with autism this would not be an
appropriate response, because they would not understand it, but for us
and Xavier he does.
And you best believe he has parents who believe in well behaved children.
When I cam home from work last night, he was still awake...?
When I went into his room, the first thing he asked for was "Computer please."
I sat down on his bed and told him "no".. he lost Computer today.
Then he said " Morning" meaning.. " Will I get is back in the morning and I said yes..
Then he went through what he hoped to me his schedule on today..Saying out loud to me
" Morning, Breakfast, Haircut, Shower, Computer".. and I nodded...
Then he said " Gimmie Kiss"... "This is his way of seeing if I am angry
with him for his behavior or willing to make up..." so I smiled and
told him..
" You give ME A KISS" and he did....
Then he asked to go to the restroom and came back to bed.
I told him goodnight and he said " Good night Mommy, I love you"...
And it is just another day....
Friday, July 18, 2014
THE MELTDOWN
On June 20th
I decided to take Xavier with me to Wal-mart to pick up a video game order online for him.
But on this day, the short shopping trip went Totally wrong...
I spent an hour in Walmart struggling with a fighting, kicking Xavier. We went to pick up the video game we ordered for him and He wanted a LIFE GAME BOX and got away from me and got on the aisle with it.
It took over one Hour to finally get him out the store.
Sheriff came as well many Walmart workers and managers and even a man who offered to pray for me.
Then God sent help...
A worker that used to work in a group home helped me get him in a wheel chair. Big guy like his father so I think Xavier sort of "took to him"
I asked the mgr if I could Give him the box he wanted and then once in car I gave it back to Walmart worker to take back in the store. The ride home was rough but we made it through.
Then he got a little calmer in between his crying and screaming ...he stops and says "I'm sorry and it will be alright" and I melted.
You may say why post this?
Because ...
This is the real side of autism no one advertises but millions of parents deal with everyday and though I have been trained to deal with it ...and the training was NOT CHEAP... And dealing with it even with training NEVER does not make the emotions of it easier.
Then I think about the parents that can't afford care, that don't know what to do.
That can't attend church or go anywhere because of their child and I won't complain. So when you see laws NOT being passed to help the millions of people who are suffering, think about who you vote for and pray for those families as well. Families like mine...
He is still whining when we arrived home,His t-shirt is torn to shreds, and so is my heart because although these things dont happen very often anymore, they are NEVER easy. He was much calmer so I put some Ice on my arm and and marching on..
I decided to take Xavier with me to Wal-mart to pick up a video game order online for him.
But on this day, the short shopping trip went Totally wrong...
I spent an hour in Walmart struggling with a fighting, kicking Xavier. We went to pick up the video game we ordered for him and He wanted a LIFE GAME BOX and got away from me and got on the aisle with it.
It took over one Hour to finally get him out the store.
Sheriff came as well many Walmart workers and managers and even a man who offered to pray for me.
Then God sent help...
A worker that used to work in a group home helped me get him in a wheel chair. Big guy like his father so I think Xavier sort of "took to him"
I asked the mgr if I could Give him the box he wanted and then once in car I gave it back to Walmart worker to take back in the store. The ride home was rough but we made it through.
Then he got a little calmer in between his crying and screaming ...he stops and says "I'm sorry and it will be alright" and I melted.
You may say why post this?
Because ...
This is the real side of autism no one advertises but millions of parents deal with everyday and though I have been trained to deal with it ...and the training was NOT CHEAP... And dealing with it even with training NEVER does not make the emotions of it easier.
Then I think about the parents that can't afford care, that don't know what to do.
That can't attend church or go anywhere because of their child and I won't complain. So when you see laws NOT being passed to help the millions of people who are suffering, think about who you vote for and pray for those families as well. Families like mine...
He is still whining when we arrived home,His t-shirt is torn to shreds, and so is my heart because although these things dont happen very often anymore, they are NEVER easy. He was much calmer so I put some Ice on my arm and and marching on..
Tuesday, March 18, 2014
Fighting for our teeth.
With Xavier having so many oral sensory issues. Brushing his teeth has always been a challenge.
For about 4 years he had a dentist that worked with special needs children in our neighborhood that did a very good job of cleaning his teeth.
But about two years ago, when we went in for a routine cleaning, that all changed.
The staff took him back and after about 10 minutes came back out to the lobby to get me as he was on the verge of a melt down and all he would say to me was "car and home".
Xavier does nor have much language so when he makes a real effort to express himself, I LISTEN.
So we left and have not returned. I am not sure what took place that morning, but I usually follow my gut in those situations as well when I pull up to the dentist office he wont even get out of the car.
Fast forward to last year we tried a new dentist and even with him seeing Big Brother Jordan going through the dental appointment routine just fine, he BARELY made it through..Had to sit with him just to get the X-rays done.. The cleaning was even worse.. I sat on him most of the time...He was very afraid....
His dentist referred us to the Ga DDD Foundation and finally a few weeks ago we were able to get in to get a tooth filled that had begun to hurt him so much he was showing it to ANYONE that would look and "Say HURT"..
On March 3rd after fighting early morning traffic to get him to the dentist at 7am. Going from getting a filling to having a tooth extraction. Getting home and throwing up everywhere. Taking a nap and waking up to a lip that is twice its normal size. Pulling out the gauze and stitches himself and causing his mom to almost pass out. Eating jello and Apple sauce and rice and anything soft for three days. Becoming irritable and constipated from pain meds and Antibiotics and going from being out of school for two days to a week ( thanks to him ripping out everything and mom scared he gonna get dry socket... Xavier Trent went back to school like a thief in the night this morning and Lord knows his mom doesn't know who is happier about that ... Me or him ! LMBO... Thanking everyone who prayed, texted and inboxed me to check on him....
This boy is one tough dude ... Daddy, Mark L. Trent, need to teach this kid how to play football !
We now have clean teeth that no longer hurt and Mom that is determined to keep them that way.
Of course, I am sure on his next cleaning appt in September we are surely going to give him something to sedate him before we even drive back... LOL!
With Xavier having so many oral sensory issues. Brushing his teeth has always been a challenge.
For about 4 years he had a dentist that worked with special needs children in our neighborhood that did a very good job of cleaning his teeth.
But about two years ago, when we went in for a routine cleaning, that all changed.
The staff took him back and after about 10 minutes came back out to the lobby to get me as he was on the verge of a melt down and all he would say to me was "car and home".
Xavier does nor have much language so when he makes a real effort to express himself, I LISTEN.
So we left and have not returned. I am not sure what took place that morning, but I usually follow my gut in those situations as well when I pull up to the dentist office he wont even get out of the car.
Fast forward to last year we tried a new dentist and even with him seeing Big Brother Jordan going through the dental appointment routine just fine, he BARELY made it through..Had to sit with him just to get the X-rays done.. The cleaning was even worse.. I sat on him most of the time...He was very afraid....
His dentist referred us to the Ga DDD Foundation and finally a few weeks ago we were able to get in to get a tooth filled that had begun to hurt him so much he was showing it to ANYONE that would look and "Say HURT"..
On March 3rd after fighting early morning traffic to get him to the dentist at 7am. Going from getting a filling to having a tooth extraction. Getting home and throwing up everywhere. Taking a nap and waking up to a lip that is twice its normal size. Pulling out the gauze and stitches himself and causing his mom to almost pass out. Eating jello and Apple sauce and rice and anything soft for three days. Becoming irritable and constipated from pain meds and Antibiotics and going from being out of school for two days to a week ( thanks to him ripping out everything and mom scared he gonna get dry socket... Xavier Trent went back to school like a thief in the night this morning and Lord knows his mom doesn't know who is happier about that ... Me or him ! LMBO... Thanking everyone who prayed, texted and inboxed me to check on him....
This boy is one tough dude ... Daddy, Mark L. Trent, need to teach this kid how to play football !
We now have clean teeth that no longer hurt and Mom that is determined to keep them that way.
Of course, I am sure on his next cleaning appt in September we are surely going to give him something to sedate him before we even drive back... LOL!
 | |
| Fighting the morning Traffic to make it DDD by 7am |
 | |
| Showing Mommy his hurting tooth on the way.. I am trying to make SURE he understands that he is going to be HELPED not Hurt... |
 | |
| In the Waiting area... |
 | |
| They had to sneak a sedation shot in on him while I sat and distracted him.. Otherwise he would have fought them off.. |
 | |
| He cant fight the Sedation shot, but he is really trying !!! |
 | ||
| After Surgery being brought into Recovery Room to Mom and Dad..Poor baby.. My heart melted when I saw him! |
 | |
| Riding Home laying on Mom.. Very drowsy.. I have my "barf bag" ready just in case..;-) |
 | ||
| After getting home, vomiting everywhere and taking a nap. Daddy left for work and he woke up like this! YIKES...!!! |
 | |
| Found out later he had pulled the stitches and gauze out of his tooth and Dr had to call in Antibiotics as a precaution. |
 | |
| Can hardly eat with lip swollen but doesn't want mom to feed him.. ( I tried but he took the spoon from me ) Not a happy guy right now... Can only have soft foods for next few days.. Not good for a meat eater like Xavier! |
 | |
| A week home with mom and now we can close out mouth so not a risk for "Dry Socket"..Other than a bruise left on his lip, he is eating normal and ready to get out of the house and away from me. I am sure....;-) |
 | |
| Like a thief in the Night....Off to the school bus he goes !!! |
Sunday, May 26, 2013
Summer isnt always a vacation when you have Autism
We are three days into Summer vacation and I realize it is going to be a very loooong Summer for Xavier.
For years, When other parents couldn't wait for a break in school so they wouldn't have to rise at the crack of dawn each day, I would dread any type of break from school basically because Xavier would be miserable and in the process make us all miserable as well.
This not only made me dread Summer vacation but also Spring Break, Thanksgiving and Christmas Break!!!
Change is hard for anyone, but for a child with Autism it is nearly unbearable.
In previous years Xavier will ask for school each day of the week aaaallll daaaaay....
Even when I would try to explain to him that it was "break" he would not understand and still whine all day long.
Usually by the time I got him adjusted to "no school today" it was time to go back to school and he would get upset once there and having to deal with " another change" again ...
It was and still is to some extent a bad cycle for him.
After we moved to Georgia and I could not work due to lack of childcare, Most times when he and Jordan were younger and I would spend the Summers " keeping them busy" on the cheap.. Blow up pools or when we moved into a HOA community I would plan on taking them to the pool when it was not so crowded and noisy around sundown and allow he and Jordan swim time each day. Many times Jordan would also go with friends and then again with Xavier and I.
Since Xavier would still awaken at his normal " school time" I had to keep him on a schedule as I realized that even if the schedule was different, just "knowing" what was next or that there would be something to do kept him calmer to some extent.
I found that if I set a routine of "keeping Xavier busy" to wear him out, I could have some peace during the day. That's when I realized I was being "worn out" too!
As I started working more, this time " to wear him out " became more limited.
There is only one Summer Camp for Children with Autism in my area and it is 300.00 per week.
So since it was way cheaper, I would send Jordan to camps at least three weeks out of the Summer and that way I would only have Xavier to run ragged each day.The days they were both at home, I can have Jordan to at least distract Xavier some. One good thing about Georgia is that the heat will wear you down very quickly, so a 30 minute walk with Lucky in the park and then some play time would usually have them both tired for at least two hours. Lucky even longer! :-)
I have to say as he has gotten older and "lived through" more school breaks he has gotten somewhat better at " making entertainment for himself" . His transitions back to school after breaks have gotten better as well.
But still, on days like today when I hear the sound of him constantly saying.." School tomorrow" lets me know he hasn't quite figured out that Summer Break is here but he does know he is bored.
Lucky for him, I have a large packet of Summer Speech lessons his Speech Therapist sent home with him and many worksheets from previous Summers for him to complete.
For some reason having " school work "to do during the Summer months helps keep Xavier calm.
For Jordan the TOTAL opposite is true, he does his assigned Summer reading with MUCH prodding and doesn't want to SEE anything related to school during his break. He would rather veg out on TV and movies all Summer and I think this Summer I will allow him that time. I wont be making him read an extra book off his reading list this time..
Hey, whatever works!
For years, When other parents couldn't wait for a break in school so they wouldn't have to rise at the crack of dawn each day, I would dread any type of break from school basically because Xavier would be miserable and in the process make us all miserable as well.
This not only made me dread Summer vacation but also Spring Break, Thanksgiving and Christmas Break!!!
Change is hard for anyone, but for a child with Autism it is nearly unbearable.
In previous years Xavier will ask for school each day of the week aaaallll daaaaay....
Even when I would try to explain to him that it was "break" he would not understand and still whine all day long.
Usually by the time I got him adjusted to "no school today" it was time to go back to school and he would get upset once there and having to deal with " another change" again ...
It was and still is to some extent a bad cycle for him.
After we moved to Georgia and I could not work due to lack of childcare, Most times when he and Jordan were younger and I would spend the Summers " keeping them busy" on the cheap.. Blow up pools or when we moved into a HOA community I would plan on taking them to the pool when it was not so crowded and noisy around sundown and allow he and Jordan swim time each day. Many times Jordan would also go with friends and then again with Xavier and I.
Since Xavier would still awaken at his normal " school time" I had to keep him on a schedule as I realized that even if the schedule was different, just "knowing" what was next or that there would be something to do kept him calmer to some extent.
I found that if I set a routine of "keeping Xavier busy" to wear him out, I could have some peace during the day. That's when I realized I was being "worn out" too!
As I started working more, this time " to wear him out " became more limited.
There is only one Summer Camp for Children with Autism in my area and it is 300.00 per week.
So since it was way cheaper, I would send Jordan to camps at least three weeks out of the Summer and that way I would only have Xavier to run ragged each day.The days they were both at home, I can have Jordan to at least distract Xavier some. One good thing about Georgia is that the heat will wear you down very quickly, so a 30 minute walk with Lucky in the park and then some play time would usually have them both tired for at least two hours. Lucky even longer! :-)
I have to say as he has gotten older and "lived through" more school breaks he has gotten somewhat better at " making entertainment for himself" . His transitions back to school after breaks have gotten better as well.
But still, on days like today when I hear the sound of him constantly saying.." School tomorrow" lets me know he hasn't quite figured out that Summer Break is here but he does know he is bored.
Lucky for him, I have a large packet of Summer Speech lessons his Speech Therapist sent home with him and many worksheets from previous Summers for him to complete.
For some reason having " school work "to do during the Summer months helps keep Xavier calm.
For Jordan the TOTAL opposite is true, he does his assigned Summer reading with MUCH prodding and doesn't want to SEE anything related to school during his break. He would rather veg out on TV and movies all Summer and I think this Summer I will allow him that time. I wont be making him read an extra book off his reading list this time..
Hey, whatever works!
Friday, May 24, 2013
No more Elementary school... whats next?
The last day of school has come and Summer has begun.
But more so what has been on my mind is that Xavier has had his last day of Elementary school.
This school year has presented more challenges for him and I than I had ever dreamed.
More so, it has caused me to drastically rethink my dreams for Xavier and rethink what I want his life to " look like" in the future.
Truth is .........He is growing up!
He is no longer looking like the "little boy" with Autism I started this journey with, but more so like the "MAN" with Autism he is set to become and that is VERY scary for me.
This year he was adamant about having his birthday cake even though I was under the weather on the Sunday I told him we were to cook for him.
I had sent in treat bags and Confetti Rice Krispy treats to school on his actual birthday in hopes that would satisfy him but on Sunday after church, he kept " telling me " BIRTHDAY CAKE" until he got his Traditional Trent household, birthday dinner and cake.. He put his hands over his ears as usual as Mark, Jordan and I sang to him and blew out his candles.. Then he sat with a satisfied look on his face while he ate his GFCF cake and Ice cream..
I am sure all parents who have special needs children get to a point where they realize that what they had hoped for their child and what the reality is for them is very far apart.
I was watching a show on the Oprah Network and a statement was made that Struck me:
" You cant love someone and not be TRUTHFUL to them"
So I know I must be Truthful to myself and others including Xavier because I love him.
So truth is I have had that realization this school year in more ways than one that what I want for Xavier and what he is capable of at this point are Miles APART...and I admit it has been heartbreaking, but know I must press on towards the new goals set.
For one, Xavier is still having behavior issues. His new school placement for the past five months didn't stop these and we are not sure if it didn't make it worse...
His last IEP meeting took two days to complete and we have decided to send him to a school for children with behavior issues to a program that focus on only children with Autism, rather than a regular Middle School with Special needs placement.
He can stay there until he gets out of High School if needed.
Yeah I know, " NO more Least Restrictive Environment" for him...
No, its not what I had in mind for Xavier 5 years ago when I thought of what he would be doing and where his school setting would be like at this age, but I am a realist and I realize he needs it.
His old IEP has been kicked to the trashcan and now his new one will focus more on Functional skills rather than the academic goals he has always had before....
I no longer care if he can add 2 digits and regroup. I want him to be able to use a calculator to add up his money and know what to pay a cashier for groceries and pay for a meal at a restaurant.
We will no longer focus on him learning site words and reading a book, but rather that he recognize and read signs in the community and follow a crosswalk signs as not to get hit by a car while crossing the street.
This new school also has a Functional Skills room complete with kitchen and bedroom so he can learn to cook a simple meal and make his own bed, fold his own clothes and clean his own house.
Now that he is a preteen I have started focusing in on giving him chores at home. For one he has started to feed the dog each day and Jordan takes him out afterwards. Previously, this was Jordan's chore alone.
So far Xavier has taken to the task and although he has to be reminded to complete it each morning, when asked he goes at it.
He has even refilled the food bin on his own when he knows it has gotten empty. But hasn't been able to say or tell us when Lucky needs more food... LOL !
So now that Xavier is 12 years old, my focus has become on what he will look like when those numbers are reversed and he is 21 years old.
At his last IEP meeting, during my " Parent Statement" time, I mentioned this change in Direction for Xavier and how we see his future now..
Now that we have taught him to feed the dog at home and since now I know he will not attend college, I look at learning to feed the dog differently as maybe he can learn to feed the animals at the Zoo instead...
But then the looming issue in the new plan IS BEHAVIOR.. and lack of Language..
Truth is ......
He wont be able to get a job at the zoo if he is still having meltdowns, or doesn't have the language to tell his boss he isn't feeling well on a particular day and needs to go home..
The New School placement is mainly "Behavior Based" and hopefully will help with his "Main Issue" of behavior and his Speech and Language time as been doubled as well.
When Jordan became a Pre-teen, I was worried more so about "Girls" than how he will care for himself on a day to day basis. Jordan has his own challenges but nothing as deep as the ones Xavier will face.
I must say this new way of looking at the rest of our lives, planning a retirement for three and focusing on getting Xavier the Functional Skills he will need as an adult with Autism seems a daunting task right now.. and one I am sure will change the direction of our Autism Odyssey forever and for the better I pray....
Now if only I can start this Summer by getting him to not ask for "computer please" every five minutes! LOL !
Guess we will start by practicing our "Telling time" skill and telling him he gets computer at a certain time each day...?
I will let yall know how that one goes .. ..;-)
But more so what has been on my mind is that Xavier has had his last day of Elementary school.
This school year has presented more challenges for him and I than I had ever dreamed.
More so, it has caused me to drastically rethink my dreams for Xavier and rethink what I want his life to " look like" in the future.
Truth is .........He is growing up!
He is no longer looking like the "little boy" with Autism I started this journey with, but more so like the "MAN" with Autism he is set to become and that is VERY scary for me.
This year he was adamant about having his birthday cake even though I was under the weather on the Sunday I told him we were to cook for him.
I had sent in treat bags and Confetti Rice Krispy treats to school on his actual birthday in hopes that would satisfy him but on Sunday after church, he kept " telling me " BIRTHDAY CAKE" until he got his Traditional Trent household, birthday dinner and cake.. He put his hands over his ears as usual as Mark, Jordan and I sang to him and blew out his candles.. Then he sat with a satisfied look on his face while he ate his GFCF cake and Ice cream..
I am sure all parents who have special needs children get to a point where they realize that what they had hoped for their child and what the reality is for them is very far apart.
I was watching a show on the Oprah Network and a statement was made that Struck me:
" You cant love someone and not be TRUTHFUL to them"
So I know I must be Truthful to myself and others including Xavier because I love him.
So truth is I have had that realization this school year in more ways than one that what I want for Xavier and what he is capable of at this point are Miles APART...and I admit it has been heartbreaking, but know I must press on towards the new goals set.
For one, Xavier is still having behavior issues. His new school placement for the past five months didn't stop these and we are not sure if it didn't make it worse...
His last IEP meeting took two days to complete and we have decided to send him to a school for children with behavior issues to a program that focus on only children with Autism, rather than a regular Middle School with Special needs placement.
He can stay there until he gets out of High School if needed.
Yeah I know, " NO more Least Restrictive Environment" for him...
No, its not what I had in mind for Xavier 5 years ago when I thought of what he would be doing and where his school setting would be like at this age, but I am a realist and I realize he needs it.
His old IEP has been kicked to the trashcan and now his new one will focus more on Functional skills rather than the academic goals he has always had before....
I no longer care if he can add 2 digits and regroup. I want him to be able to use a calculator to add up his money and know what to pay a cashier for groceries and pay for a meal at a restaurant.
We will no longer focus on him learning site words and reading a book, but rather that he recognize and read signs in the community and follow a crosswalk signs as not to get hit by a car while crossing the street.
This new school also has a Functional Skills room complete with kitchen and bedroom so he can learn to cook a simple meal and make his own bed, fold his own clothes and clean his own house.
Now that he is a preteen I have started focusing in on giving him chores at home. For one he has started to feed the dog each day and Jordan takes him out afterwards. Previously, this was Jordan's chore alone.
So far Xavier has taken to the task and although he has to be reminded to complete it each morning, when asked he goes at it.
He has even refilled the food bin on his own when he knows it has gotten empty. But hasn't been able to say or tell us when Lucky needs more food... LOL !
So now that Xavier is 12 years old, my focus has become on what he will look like when those numbers are reversed and he is 21 years old.
At his last IEP meeting, during my " Parent Statement" time, I mentioned this change in Direction for Xavier and how we see his future now..
Now that we have taught him to feed the dog at home and since now I know he will not attend college, I look at learning to feed the dog differently as maybe he can learn to feed the animals at the Zoo instead...
But then the looming issue in the new plan IS BEHAVIOR.. and lack of Language..
Truth is ......
He wont be able to get a job at the zoo if he is still having meltdowns, or doesn't have the language to tell his boss he isn't feeling well on a particular day and needs to go home..
The New School placement is mainly "Behavior Based" and hopefully will help with his "Main Issue" of behavior and his Speech and Language time as been doubled as well.
When Jordan became a Pre-teen, I was worried more so about "Girls" than how he will care for himself on a day to day basis. Jordan has his own challenges but nothing as deep as the ones Xavier will face.
I must say this new way of looking at the rest of our lives, planning a retirement for three and focusing on getting Xavier the Functional Skills he will need as an adult with Autism seems a daunting task right now.. and one I am sure will change the direction of our Autism Odyssey forever and for the better I pray....
Now if only I can start this Summer by getting him to not ask for "computer please" every five minutes! LOL !
Guess we will start by practicing our "Telling time" skill and telling him he gets computer at a certain time each day...?
I will let yall know how that one goes .. ..;-)
Tuesday, April 2, 2013
When Autism Hurts
I haven't had time to blog in a looong time.
I have been so busy with life that sitting down to the computer seemed like such a daunting task, rather than an enjoyment as it was before.
But today in honor of Xavier and National Autism month, I feel compelled to do so..
For one, my mother came to live in GA in October and I have been so busy setting up her drs, finding a good Care Home for her and just staying on top of her care while juggling the million things I already do with Xavier.
But I am glad to say that despite many setbacks, she is finally settled and feeling and looking good and I am happy and grateful to God for that
.jpg)
The month of April is National Autism Month. I subscribe to a website that uses this month as a month of prayer for those directly or indirectly affected by autism. It is called prayer@childrenofdestiny.org
Being that I am a Christian, I believe that with all the things I can do for Xavier as his mother, the most powerful, effective thing I can do for him is to pray for him.
There has been many times on my Autism Odyssey that I have found myself helpless and unable to help him in my human physical frailties.
But I can always approach the throne of God on his behalf and God has never let me down when I do.
But in my shortcomings I find I do exhaust myself until I am really on my knees physically before I do.. You know how we are. We think we can handle it on our own and then God reminds us we were never really "handling it" in the first place.
I have been asking everyone on my Facebook page to pray with me for the next 30 days with prayers sent each day by prayer@childrenofdestiny.org.
I will also be asking everyone to participate in the Day of Fasting and Prayer this website holds each year during the month of April.
Ironically for the past two years that day of fasting and prayer fell on Xavier's birthday, April 23rd.
I hope it falls on that day again this year because I am looking for the Lord to move in a huge way for him this year.
You see for the past two years we have been working on getting Xavier to stop having tantrums or Autistic meltdowns is what the term is normally referred to.
It is when someone with Autism is overwhelmed by their surroundings, or fixated on a task or upset by a change in routine that they just loose it.
Many people have posted so much about this on youtube and autism sites and I have found that many Autistic adults suffer from this as well.
It has been my goal to rid Xavier of this before he becomes to big for me to handle when this happens.
Here are some links on Youtube for you to see how this looks:
http://www.examiner.com/article/autism-meltdowns-versus-temper-tantrums
Here is a youtube clip a mom shared on YOUTUBE of her son who has these daily
http://youtu.be/3yTvaqw9M8g
Another older child having a melt
http://youtu.be/s2lEyno1vwo
Thankfully with a good teaching staff, expensive home visits for 10 weeks in a row by the Marcus Institute here in Ga and a very good County school behavior specialist and of course PRAYERS, Xavier had gotten to the point where he would only do this on occasion, usually in a new situation or when he really wanted something he could not have.
At school he had gone from having these many times at day to on average twice a month and he had to be REALLY angry to do so.
So at the end of the Semester before Christmas, we met with the school and with his IEP team decided to pull him out of regular school and send a school with all children with Special needs to try and rid him completely of this behavior as he was having to have a huge male parapro (we called him Mr T) with him at all times in school in case he did have a meltdown.
Since they werent happening everyday, it really was not effective and plus who wants to have their child need a 200 lbs or bigger caretaker.
I know, I know, Education in the Least Restrictive Environment.
But I knew it would only be temporary as he had come so far and why not try this seclusive environment before he goes to Middle school next year and give him a chance to learn to "Calm Himself" verses having to be physically restrained. Even if it wasnt often.
Well I am sad to say it is not going as well as to be expected. He is starting to regress and the new school isnt in a hurry to go back on the path we have chosen.
After what I thought was a very productive IEP meeting last Wednesday...
Xavier came home yesterday looking like this...
Yeah, I know.. Call DHS , Catch a case, WTW!
But I have been here before and know what to do.
Put on the armor of God and pray, but call upon Jesus the LION and not the Lamb and FIGHT!
So many emails have been sent today.
Its time for a change yall. QUICKLY.
I was at work when he came home like this. I got an email from his teacher beforehand explaining that when Xavier went to press him mouth against his arm as he does when he is upset, the teacher yanked it away and "clipped' Xavier's face..
Needless to say it was hard not to cry when I saw this picture at my desk last night. Hard to concentrate but God helped me make it through. When I got home he was sleeping, but I just had to go in and take a "peep" at him and of course kiss his face before I showered and went to bed. I tell myself it could be worse.
Xavier has been in school before where he was really being treated badly. When he was in kindergarten. The teacher and staff would put him in a room when he had a meltdown to scream and kick a file cabinet and Jordan who was attending the same school at the time would often come home and tell me he thought he heard Xavier screaming in his classroom down the hall.
Jordan's grades began to fall and his teacher said he was having frequent urination, but when I investigated and questioned Jordan further I found he was asking to go to the restroom trying to "find" his brother when he heard his screams. This was when they were in Kindergarten and First grade. Thankfully a para-pro called me one evening and told me what was going on. To this day I THANK GOD for her courage and willingness to stand up for what was right. By doing so she went from being "parapro" of the year to having to quit her job. But today she is still a good friend and most of all Carletta Cheeseboro, is one of my heroes.. We Love you CHEESEBURGER!
Thank God Mark got transferred with his job and we moved to GA that year. It was a hard transition for Xavier, but better than where we were.
So back then and still today , since Xavier does not have the language to tell me what actually happened, I have had to learn to lean on "Godly discernment" and learned to have a "connection " with him to know when he does not want to be in a situation. I know when Xavier is being abused and when he is not.
When the things were happening in Kindergarten when it was time for school he would just say the word "afraid". It would break my heart to drop he and Jordan off at school each day with him looking at me and me trying to "make a happy" face and tell him he would be ok. Only to drive home in tears asking the Lord to protect my baby because I knew I could not.
So when Xavier got home on yesterday, We know to try and make the Afternoon as "Normal" as possible. I wasnt at home with him yesterday, but His WONDERFUL father and brother, took over for me with ease..
He had his normal computer time:
Then Daddy applied raw potato and ice compress as much as Xavier would allow and dinner and bath. Once the swelling went down some we could see the bruise underneath
This morning when he awakened, Here is what his face looks like today before school
To decide whether to send him to school today, I try to make sure, that he is ok with going to school. I ask him whats next or say "School today" and watch his reactions. I watch to see if he is getting upset, does he say "no" when I say school?
Most of all I try to keep a calm demeanor and not let him see I am upset as not to make him afraid or upset.
So this morning, I made sure things were "normal"
I even got a smile out of him at breakfast
He watched his favorite cartoon before the school bus came as usual and I watched to be sure he was not getting anxious beforehand ( another sign he doesnt want to go)
And in true Xavier style, he went to school with a happy heart and the true spirit of a champion
So what am I to do.
I have no choice, I must stand up for him. I am "inspired" by him.
He woke up today with a happy heart, ready to try again, SO I MUST DO SO AS WELL.
When he wakes each morning, I go into his room and I say Good morning Xavier and he says "Good morning Mommy" and then we are quiet for a few minutes and can hear the birds singing outside his window.. " Then he will say " " I see a bird" and I say no " You hear a bird" and then he will smile.
And even today his routine did not change.
He can still hear a song, no matter the physical state he is in.
I can and I do learn a lot from him.
When I want to complain about how hard it is , or want to give up, he is a TRUE reminder to wait on the Lord and he will renew my strength,
I will mount up and fly as an eagle and like Xavier.. I WILL SEE AND HEAR A BIRD. I will hear the sweet sounds of God in the midst of my storm.
Isaiah 40:31
but they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.
So when you pray this month, pray not only for Xavier, but for everyone that is affected, works with, cares for and knows someone dealing with Autism.
We all need prayer, but those of us living this each day need just a few more.
Now its time for me to wipe my tears and get to work. Xavier needs me and plus Jordan has left his lunchpail at home again...;-)
Love Yall
Talk to you soon.
I have been so busy with life that sitting down to the computer seemed like such a daunting task, rather than an enjoyment as it was before.
But today in honor of Xavier and National Autism month, I feel compelled to do so..
For one, my mother came to live in GA in October and I have been so busy setting up her drs, finding a good Care Home for her and just staying on top of her care while juggling the million things I already do with Xavier.
But I am glad to say that despite many setbacks, she is finally settled and feeling and looking good and I am happy and grateful to God for that
.jpg)
Being that I am a Christian, I believe that with all the things I can do for Xavier as his mother, the most powerful, effective thing I can do for him is to pray for him.
There has been many times on my Autism Odyssey that I have found myself helpless and unable to help him in my human physical frailties.
But I can always approach the throne of God on his behalf and God has never let me down when I do.
But in my shortcomings I find I do exhaust myself until I am really on my knees physically before I do.. You know how we are. We think we can handle it on our own and then God reminds us we were never really "handling it" in the first place.
I have been asking everyone on my Facebook page to pray with me for the next 30 days with prayers sent each day by prayer@childrenofdestiny.org.
I will also be asking everyone to participate in the Day of Fasting and Prayer this website holds each year during the month of April.
Ironically for the past two years that day of fasting and prayer fell on Xavier's birthday, April 23rd.
I hope it falls on that day again this year because I am looking for the Lord to move in a huge way for him this year.
You see for the past two years we have been working on getting Xavier to stop having tantrums or Autistic meltdowns is what the term is normally referred to.
It is when someone with Autism is overwhelmed by their surroundings, or fixated on a task or upset by a change in routine that they just loose it.
Many people have posted so much about this on youtube and autism sites and I have found that many Autistic adults suffer from this as well.
It has been my goal to rid Xavier of this before he becomes to big for me to handle when this happens.
Here are some links on Youtube for you to see how this looks:
http://www.examiner.com/article/autism-meltdowns-versus-temper-tantrums
Here is a youtube clip a mom shared on YOUTUBE of her son who has these daily
http://youtu.be/3yTvaqw9M8g
Another older child having a melt
http://youtu.be/s2lEyno1vwo
Thankfully with a good teaching staff, expensive home visits for 10 weeks in a row by the Marcus Institute here in Ga and a very good County school behavior specialist and of course PRAYERS, Xavier had gotten to the point where he would only do this on occasion, usually in a new situation or when he really wanted something he could not have.
At school he had gone from having these many times at day to on average twice a month and he had to be REALLY angry to do so.
So at the end of the Semester before Christmas, we met with the school and with his IEP team decided to pull him out of regular school and send a school with all children with Special needs to try and rid him completely of this behavior as he was having to have a huge male parapro (we called him Mr T) with him at all times in school in case he did have a meltdown.
Since they werent happening everyday, it really was not effective and plus who wants to have their child need a 200 lbs or bigger caretaker.
I know, I know, Education in the Least Restrictive Environment.
But I knew it would only be temporary as he had come so far and why not try this seclusive environment before he goes to Middle school next year and give him a chance to learn to "Calm Himself" verses having to be physically restrained. Even if it wasnt often.
Well I am sad to say it is not going as well as to be expected. He is starting to regress and the new school isnt in a hurry to go back on the path we have chosen.
After what I thought was a very productive IEP meeting last Wednesday...
Xavier came home yesterday looking like this...
Yeah, I know.. Call DHS , Catch a case, WTW!
But I have been here before and know what to do.
Put on the armor of God and pray, but call upon Jesus the LION and not the Lamb and FIGHT!
So many emails have been sent today.
Its time for a change yall. QUICKLY.
I was at work when he came home like this. I got an email from his teacher beforehand explaining that when Xavier went to press him mouth against his arm as he does when he is upset, the teacher yanked it away and "clipped' Xavier's face..
Needless to say it was hard not to cry when I saw this picture at my desk last night. Hard to concentrate but God helped me make it through. When I got home he was sleeping, but I just had to go in and take a "peep" at him and of course kiss his face before I showered and went to bed. I tell myself it could be worse.
Xavier has been in school before where he was really being treated badly. When he was in kindergarten. The teacher and staff would put him in a room when he had a meltdown to scream and kick a file cabinet and Jordan who was attending the same school at the time would often come home and tell me he thought he heard Xavier screaming in his classroom down the hall.
Jordan's grades began to fall and his teacher said he was having frequent urination, but when I investigated and questioned Jordan further I found he was asking to go to the restroom trying to "find" his brother when he heard his screams. This was when they were in Kindergarten and First grade. Thankfully a para-pro called me one evening and told me what was going on. To this day I THANK GOD for her courage and willingness to stand up for what was right. By doing so she went from being "parapro" of the year to having to quit her job. But today she is still a good friend and most of all Carletta Cheeseboro, is one of my heroes.. We Love you CHEESEBURGER!
Thank God Mark got transferred with his job and we moved to GA that year. It was a hard transition for Xavier, but better than where we were.
So back then and still today , since Xavier does not have the language to tell me what actually happened, I have had to learn to lean on "Godly discernment" and learned to have a "connection " with him to know when he does not want to be in a situation. I know when Xavier is being abused and when he is not.
When the things were happening in Kindergarten when it was time for school he would just say the word "afraid". It would break my heart to drop he and Jordan off at school each day with him looking at me and me trying to "make a happy" face and tell him he would be ok. Only to drive home in tears asking the Lord to protect my baby because I knew I could not.
So when Xavier got home on yesterday, We know to try and make the Afternoon as "Normal" as possible. I wasnt at home with him yesterday, but His WONDERFUL father and brother, took over for me with ease..
He had his normal computer time:
Most of all I try to keep a calm demeanor and not let him see I am upset as not to make him afraid or upset.
So this morning, I made sure things were "normal"
I even got a smile out of him at breakfast
And in true Xavier style, he went to school with a happy heart and the true spirit of a champion
I have no choice, I must stand up for him. I am "inspired" by him.
He woke up today with a happy heart, ready to try again, SO I MUST DO SO AS WELL.
When he wakes each morning, I go into his room and I say Good morning Xavier and he says "Good morning Mommy" and then we are quiet for a few minutes and can hear the birds singing outside his window.. " Then he will say " " I see a bird" and I say no " You hear a bird" and then he will smile.
And even today his routine did not change.
He can still hear a song, no matter the physical state he is in.
I can and I do learn a lot from him.
When I want to complain about how hard it is , or want to give up, he is a TRUE reminder to wait on the Lord and he will renew my strength,
I will mount up and fly as an eagle and like Xavier.. I WILL SEE AND HEAR A BIRD. I will hear the sweet sounds of God in the midst of my storm.
Isaiah 40:31
but they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.
So when you pray this month, pray not only for Xavier, but for everyone that is affected, works with, cares for and knows someone dealing with Autism.
We all need prayer, but those of us living this each day need just a few more.
Now its time for me to wipe my tears and get to work. Xavier needs me and plus Jordan has left his lunchpail at home again...;-)
Love Yall
Talk to you soon.
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