Weekend News

The football game Friday night was better than I expected.  Joseph did not want to go and fought me until we got there.  He instantly started looking for his escape route, if needed.  He made sure over and over that if he didn't like it and it was too loud we could leave.  But once inside he saw that it was a small group and not as loud as he feared.  He watched part of the game with me but was very bored.  And then he saw all the other little boys playing football down on a grassy area.  That was it.  He did not sit with me in the stands again.  He asked on the way to the car after the game who won!  I think I will leave him next time but he did do great for his first game.  (by the way, WE WON!  Go Cavaliers!!!  And I am not sure WHAT is wrong with Jerome's mouth in the photo above!!!)

Learning to cast.  He already had this down!

Saturday we went to a fishing clinic sponsored by the Walleye Association for special needs children and their siblings.  This was a huge hit!  Not only do my children love to fish but they learned a lot of things they did not know before and got free fishing poles!  It was a day full of fishing with our little Camo Angel catching the big fish of the day!  He was so proud!!!

Not real happy with water safety class.

With his big bass!

He was all smiles after that!

Things changed drastically by Sunday evening.  We took them fishing again on Sunday afternoon.  But all day he was extremely unpredictable, hyper, aggressive, and whiny.  I have seen this behavior before and know it is a warning of things to come.  I gave him his sleep medication that evening around 8 and by 10 he was still wide awake.  I sent him to bed and he seemed to doze off for a little while although he was restless and would not stop moving and jumping in his sleep. 

I woke at 2:30 a.m. and he was awake watching Sponge Bob in the living room.  I stayed on the couch the rest of the night with him.  He did not go back to sleep.  Morning found him more wound up than the day before.  He was standing on his head in a chair, talking and hollering, blurting out, flitting from one place to another, and stimming by rocking, flicking his fingers, and smelling his hands.  I knew it was going to be an eventful day.

His teacher called me that afternoon to report he was asleep and they could not wake him.  She said he was turning in circles and full of movement all morning.  And then, it was like pushing a button and he went to sleep.  He slept the rest of the afternoon.  They did some sensory therapy to try to keep him awake on the bus ride home.  He was very quiet last night.  And he went to sleep on time.  Although he woke several times during the night I was able to get him back to sleep.  He actually slept all morning as I was getting the other kids ready for school.  He told me he did not have a headache so I am not sure what it was all about.  However, as a note to his teacher, bad weather WAS moving in so the barometric pressure had to be changing.

Why are there so many autistic children with sleep problems?  No one knows for sure.  This explanation is from WebMD:

 

Researchers don't know for sure why autistic children have problems with sleep, but they have several theories. The first has to do with social cues. People know when it's time to go to sleep at night thanks to the normal cycles of light and dark and the body's circadian rhythms. But they also use social cues. For example, children may see their siblings getting ready for bed. Children with autism, who often have difficulty communicating, may misinterpret or fail to understand these cues.

Another theory has to do with the hormone melatonin, which normally helps regulate sleep-wake cycles. To make melatonin, the body needs an amino acid called tryptophan, which research has found to be either higher or lower than normal in children with autism. Typically, melatonin levels rise in response to darkness (at night) and dip during the daylight hours. Studies have shown that some children with autism don't release melatonin at the correct times of day. Instead, they have high levels of melatonin during the daytime and lower levels at night.

Another reason children with autism may have trouble falling asleep or awaken in the middle of the night could be an increased sensitivity to outside stimuli, such as touch or sound. While most kids continue to sleep soundly while their mother opens the bedroom door or tucks in the covers, a child with autism might wake up abruptly.

Anxiety is another possible condition that could adversely affect sleep. Children with autism tend to test higher than other children for anxiety.



I have also been asked to talk to the TORCH group at Bishop Neumann about autism and the upcoming walk.  They will be joining us for the walk!  And I am hoping to talk to and get the St. John Bosco youth group to join us as well.  Go Team Camo Angel!!!!!

"My Problem"

"Mom, I was sad today."

"Why, Joseph?  What made you sad?"

"Dan was making fun of Trey.  He was laughing at him because Trey likes 'Dinosaur Train'.  He said that he was going to grow up to be a man and watch 'Dinosaur Train' with his coffee.  He said it was a baby show.  He said Trey was stupid for watching it.  Is that true?"

"No, Joesph.  It isn't true.  That is a good show and I like it too."

"But Dan made Trey cry.  It made me cry too.  Because I love Trey.  Because he is like me.  He has problems.  He has autism like me mom.  And that makes me sad."

"Whoa...wait a minute, buddy!  Problems?  Who says you have problems?  What color is your hair?"

"Brown."

"Is that a problem?"

"No."

"What color are your eyes?"

"Um, I don't know.  Are they brown?"

"Yep.  And is that a problem?"

Giggling he replies, "No."

"And how many hands to you have?"

Laughing hard he says, "Two."

"And is THAT a problem?"

"NO MA'AM!"

"Then, baby, your autism is part of you.  It is not a problem.  It is different.  It is a challenge.  It makes you work hard but it is who you are!  You are NOT a problem.  Momma loves you.  I love you so much....just the way you are."

"I love you too, momma......and Trey.  I love him too!"

It is all I have the strength to post today.  I am so fearful for his future because of the cruelty of other children.  I was awake again with nightmares.  And I wonder if I was right for saying he doesn't have problems......I guess I will always second guess myself.

I am taking him to his first football game tonight.  His sister is in the high school band so we are going to try a game.  I pray that he can handle the noise and excitement.  You never know how these things can unfold.  Pray for us.

First Full Day of School

Today was the first full day of school.  Yesterday was a half day.  Someone asked how his day went so I want to report that he got off the bus yesterday with a big smile.  However, today he fell asleep on his way home.  The driver is being so kind and working with him.  He is one of the last to get off in the afternoon so she just woke him when she got here.  Not sure why he is so tired these past 2 days.  Perhaps too much anxiety with school starting.  But it is cooling off.  We are suppose to be in the 50s tomorrow morning.  I wonder if the barometric pressure is acting up?  I'll report this to his teachers.

Fixing Autism

In His World

"Mom, is it raining?"  I sat there amazed and unable to answer the question for a moment.  Raining?  The sun was brilliant.  The skies more blue than I had seen in weeks.  No clouds.  I had my sunroof open, the windows down, and the warm wind was blowing through the van.  Raining?  Why would he think it was raining???  "No, Joseph, why?"  "Because there is water on the window."

Sure enough, I had rolled the passenger side window down and then rolled it up a little.  The morning condensation had gotten the window a little streaky with water.  To him, there was water on the window so it must be raining.  Forget all the other obvious signs that it was NOT raining.  This is Joseph's world.  This is the world of autism.

I met my husband later in a parking lot where he works.  He waved to Joseph.  We talked for 15 minutes as I sat in my car and he sat in his.  Joseph played on the floor in the back of my van.  Did he know we were stopped and that I was talking to someone?  Didn't he wave to his dad?  However, when I went to leave I said, "Dad is waving goodbye to you!" and he jumps up looking and asks, "Dad is here?!?!?!"  This is Joseph's world.

I have to remind myself everyday that we live in a world of literal interpretations.  Everything is black and white.  If he asks a question I must say "yes" or "no" and not "maybe" or "we'll see".  Saying something with sarcasm is risky.  He has gotten better with it as he studies your face waiting for a smile or hint of the sarcasm.  But I remember telling him once I was about to pull my hair out.  The fear and anxiety that crossed his face told me that he had a vision of me doing just that!  My favorite part in the Temple Grandin movie is when the aunt says "We get up with the roosters around here".  Temple's autistic mind sees in pictures and that is exactly what she saw!!!

This is one of the reasons why our family does not do any of the fictional holiday characters such as Santa Claus, tooth fairy, etc.  And I guess it was not a good idea to tell him yesterday that we were on the Interstate behind a Transformer (18 wheeler).  He started calling it by a name, Optimus Prime and then asked me how the transformers got into stores.  That confused me!  Then he said "well, it was out on the road but then you can go to the store and buy it. How does it do that?"  ***sigh***  I should know by now.....black and white.....yes or no.....big truck....NOT TRANSFORMER!!!!!! 

Big Day

Today is Joseph's first day of school in 4th grade!  He was so excited!!!  Yesterday we went up to the school for a walk-through.  He and his other special needs friends got to see their new classrooms, meet the teachers and get familiar with the school again before the excitement and confusion of the first day.  He was insistent upon riding the bus to school this morning.  He says he is a big boy now and doesn't want me bringing him.  I called his bus driver and worked out a safe plan but I am still nervous.  We had a problem last night on a playground with some children making fun of him and the way he talks.  I was so crushed.  I had nightmares all night about the bus full of kids making fun of him.  It is so hard to not want to intervene at every moment when it comes to him.  My heart hurts for him so much!

On another note, I had a meeting with some wonderful ladies yesterday morning regarding my attempt to get my husband's employer to sponsor the upcoming walk.  I was shot down.  But that shall not stop me.  I plan to go to higher powers.  The statistics are there and they are real.  1 in 110 children are diagnosed with autism.  Do I believe this could be exaggerated?  Maybe.  But it doesn't change the fact that there is a very real problem.  Even if it is 1 in 500 children we have a serious issue here.  Look at the comparisons:

• Muscular Dystrophy affects 1 in 100,000
• Leukemia affects 1 in 1,200
• Juvenile Diabetes affects 1 in 500
• Aids affects 1 in 300
• Autism affect 1 in 110

There are so many theories out there on why we are seeing an increase in autism.  I am leaning toward the ones now that focus on genetics.  One study theorizes that the genetic predisposition is present at birth and there is a trigger, usually something traumatic, that brings out the autistic symptoms.  A traumatic birth is way up there on the theories with the top traumas being the cord around the neck, low apgar scores, high blood pressure moms, etc.  Could we fit any more perfectly into this group???

So today I will be without my joyful challenge in life as he begins 4th grade.  A special prayer was said this morning for his teachers and bus driver.  He was twisting his fingers as he got on the bus and was scared he would get lost without his siblings.  I asked if he wanted me to bring him and he assured me that he did NOT!  But wanted me to call Mrs. H and let her know he was on his way.....

I got a little smile!

God have mercy on our little Camouflage Angel.  Give him the graces to face his fears and challenges in life.  Carry him in Your arms and show him the way!!!  Amen.

Going Solo

We made a big decision this week.  We decided to send the rest of the children, minus Joseph, to Catholic school.  When I put them in school 2 years ago our plan was to send each child to the Catholic middle school/high school when it was time.  This year I would have had 2 at Catholic schools and the bottom three were to be in the public school.  I started to question the sanity of that decision after spending the summer with Joseph....without any camps.....without any intervention.....without relief.  It simply is not fair to expect the other children to want to be around him all the time when I look so forward to the break once school starts.  He bullies them and is aggressive toward them every chance he gets.  I want them to focus on their schooling and friends without constantly being worried about him.

The other reason is because they need to get as much grace and strength in order to deal with this difficult situation.  As they grow I want them to love their brother and not view him as a cross.  Our faith is still the center of our lives but I have noticed a shift lately.  It seems as if the chaos of autism is trying to become the center of it all and I refuse to allow this to happen.  Also, the baby of the 8 can basically start his school years going through the same school with the same friends from beginning to end.  Watching the middle school child having to make the transition helped us in making this decision.

Joseph will have to go to the public school throughout his school years because they have the help he needs.  AND HE LOVES IT!  His teachers are his "best friends" and they are the best in the world.  They have not only come to the rescue with Joseph but they have included all my children.  This is one of the greatest public schools in the country with the greatest teachers!!!!  It was not because of the wonderful staff that we decided on Joseph going solo.  It was actually a hard decision for me to make because I am so attached to this school.  They were so good with the HUGE transition a few years ago when we went from homeschooling for 16 years to putting all the children in school.  They were my angels, my heroes, and my friends.  I will forever be indebted to them!!!!

Now the poor teachers at the other schools....well....Mr. R summed it up perfectly.  Our junior told him that in 6 years he will have 4 of my children in the same school.  His response?  "Well...I know when I'm retiring!"

Going Solo....a big step for him!

A Mission Begins

Our family spent a day with some wonderful families this past Saturday at an Easter Seals Day Camp.  I have finally gotten some human contacts and faces to put to the autistic support groups in my area.  I look so forward to putting my time and energy into this cause.  They, too, were excited with some of my ideas.  I feel that Joseph has given our family a purpose in life.  I feel as if the tide has turned for us.  We feel that we have a mission and it is just beginning!!!

Mattie has been asked to sing the National Anthem for the walk in October!  She has been talking the past year or so about going into a career having to do with special needs children.  I think she has found it.  She is talking about becoming an occupational therapist!  Even Jeffrey turned out to help us Saturday and has so much fun with these children. 

These children are so beautiful.  They are forever young.  It brings the child out in all of us.  I am reminded that there are extremes in being a child.  Extreme happiness and extreme anger.  Extreme joy and extreme sadness.  The list could go on endlessly.  But when you see the innocence, the smiles, the joy it is enough to grow the love in your heart so that you are able to deal with the next week, or month, or year.  And now I understand completely the saying that "when you have seen one autistic child....you have seen one autistic child."  They are all so different!

An update to Joseph's meltdown week:  I feel sure that his "best friend" was correct and that the full moon and barometric changes were messing with him.  His behavior is much better now but he is back to not sleeping at night.  I am so exhausted!  School starts in one week and I plan to sleep....the. whole. first. week! 

Long Hard Days

This past week has been more difficult then previous weeks.  I'm not sure what is going on with him.  There is a reason that the autism symbol is a puzzle piece.  It leaves everyone touched by this illness with nothing but more questions.  I love when the therapists ask me if I know what his triggers are.  Let me see....on what day?  In what season?  At what time of day?  In what situation? 

First we are talking about a child with sensory issues, ADHD, learning disabilities, a TBI, AND autism.  And he has triggers?  How about everything in the world having the potential to be a trigger????  What was it this week?  I have yet to figure it out.

He had several meltdowns and aggressiveness toward siblings.  I have gotten him trained to turn on cartoons in the middle of the night when he can't sleep instead of waking me.  However, there have been nights during this past week that he has slept all night without waking.  So I don't think I can blame lack of sleep on this.  It has been a pretty typical week without there being any chaos, problems with other children, change of routine, etc.  He is eating his normal foods.  The weather has been beautiful.  I honestly can not figure this out.  One thing I do notice is that when he is having the meltdowns and behavioral problems he has darker circles under his eyes.  I need to make note of this and perhaps do a study.  Not sure what this means.

He also had a migraine one or two of these days.  That definitely could be the problem.  He was given medication for these but once he complains of the pain I can imagine that it is a horrific headache.  These often leave him in a stupor and we misidentified them as seizures for a few years.  I thought the medication would help but perhaps I am giving it to him too late to stop the domino effect of eventual meltdowns and aggression. 

The picture shows him after a day of headaches and meltdowns.  He was in the middle of eating popcorn and watching a movie and fell into a deep sleep.  This is what he does at school when he gets the headaches.  We used to think he was having silent seizures that would leave him exhausted. 

I am looking into getting him a dog that can alert us to problem behavior.  I do not want an autistic dog as I don't think he needs it or wants it to go everywhere with him.  But I would like to get a smart dog as a puppy that can grow with him and bond with him.  My hope is that this dog will alert us if he tries to wander, sleep walk or gets aggressive with others.  I am not sure what breed to get yet or if we even have the money.  I would like to have in professionally trained at some point with Joseph as his master.  But again, more study is needed in this area.

School starts in a week and a half.  He is very excited about this!  (so is mom!!!)  He can't wait to be back in his SPED room with his teachers.  They mean the world to him!  A special thanks to those very special teachers that recently took him (and the others in this SPED room) AND Joe's brother, who is his best friend and pal, on a day of swimming!  They had so much fun!

Please don't forget to make a small donation to team Camo Angel .  We are going for a family team info day next Sunday.  I will have more information on the walk if anyone locally would like to join me on October 9th to walk for autism.  Also, this Saturday the Easter Seals is doing a mobile day camp in Lincoln that our family will be attending.  And they have a fishing clinic in a few weeks.  Busy days ahead!!!