SPECIAL NEEDS

1:30:47 PM EDT

Okay, so it's been a little while since I updated my info. Jack is still having daily seizures. He is now taking the Tegretol 3x's daily and they added Keppra 2x's a day. The strangest thing happened the other day... We were driving around...he was watching TV in the back. We stopped at Sonic to eat. Jack let out this horrible scream and started seizing. Now, Jack doesn't get the "jerking seizures" he shakes head to toe uncontrollably. We took him out of his car seat and held him until it stopped.
Well, it took about 1 min. for his seizure to stop. Okay, a week later (yesterday, Tues. Sept. 5th) I was driving the van, my husband was in the truck behind me, and he saw me throw my flashers on, and fly the van off the highway into a store parking lot. He already new it was Jack. I heard him do that scream, and looked back and sure enough, he was shaking head to toe. I got him out (after running all the way around the van and realizing I didn't unlock the side door and had to run all the way back
around to the drivers door and unlock it!) I held him until it stopped. Well, my husband dropped his truck off at home and rode with me. Jack was watching the movie "hoodwinked". When it got to the part where the "woodman" was chopping down trees...Jack screamed and covered his eyes. I quickly turned it off. I brought the movie in the house when we got home.
Sure enough, it was that part. He had the seizure at that exact part of the movie. I called his Dr. this morning and asked them about it....They said when he gets very scared he can have a seizure. Now, I don't know why he thinks that is scary, or why it has not bothered him the 10000,0000 time before when he has watched it...but, needless to say, he will not be watching it again! Guess that's all for now. Talk to you all later.

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5:26:40 PM EDT
Feeling Sad

WELL, LET ME START WITH JACK'S DENTAL SURGERY. 

HE HAD CAPS PUT ON HIS TOP FRONT FOUR TEETH...THE OTHER TEETH WERE NOT CAVITIES LIKE THEY THOUGHT...IT WAS JUST A STAIN FROM HIS IRON VITAMINS.  ANYWAY, AFTER THEY STUCK THAT TUBE UP HIS NOSE IT BLEED A GOOD BIT...THEN HE SCREAMED AFTER THE SURGERY FROM THE GAS THEY PUT THEM TO SLEEP WITH (WHICH IS VERY NORMAL) AND ALL THE SUDDEN HE WENT LIMP IN MY ARMS AND STOPPED BREATHING.  MY HUSBAND WAS SCREAMING AT HIM, I WAS SHAKING HIM AND SCREAMING AT HIM.  IT TOOK THE NURSES ABOUT 30 SEC. FROM WHEN WE PAGED THEM AND THEY DID GET HIM TO BREATHE.  2 DAYS LATER JACK BROKE OUT IN A RASH...I ASSUMED HE WAS HAVING A REACTION TO THE MEDS.  I TOOK HIM TO HIS PED. ON MON. AFTERNOON.  HE SAID JACK IS HAVING SEIZURES AND THAT IS WHY HE PASSED OUT AND STOPPED BREATHING.  HE IS HAVING EPILIPTIC SEIZURES...AND HAS BEEN STARTED ON 60 MG DAILY OF PHENOBARBITAL.  SINCE YESTERDAY....HE HAS BEEN ACTING VERY STRANGE!  I CAN'T PUT MY FINGER ON IT BUT HE EVEN LOOKS A LITTLE DIFFERENT (ACCORDING TO ME AND HIS SPEECH THERAPIST).  I CALLED HIS DR. AND TOLD THEM ABOUT THE MOOD CHANGES...THEY SAID TO GIVE THE MEDS A WEEK AND IF HE DOESN'T IMPROVE TO CALL THEM BACK.  WELL, I AM GOING TO GO FOR NOW...WILL WRITE MORE SOON.

okay, today is July 27, 2006.  Jack was supposed to have his MRI yesterday with that oral sedation medication.  Keith took him to he hospital and the first thing they wanted to know is what he had to eat or drink.  My Dr. office did not tell me they wanted him there on an empty tummy becuase they are going to have to completly sedate him (just like they did for the dental surgery).  He will have to have that tube up his nose again, he will wake up screaming all over again and is very likely to have another major seizure again.  Needless to say, I am very unhappy about the whole situation.

Then there is the seizure medication problem.  We had to stop the PHENOBARBITAL due to severe mood and facial changes.  Now he will be starting a med. called TEGRETOL 100MG.  It has some really bad side effects to it...dizziness, blurred vision, slurred speech, nauesa, vomiting, one of the most serious and potential side effects of Tegretol is NEUROPENIA which means that the body's white blood cell count is very low.  Children with neurtopenia are at risk for overwhelming infection.  For this reason, children on Tegretol should have periodic blood tests.  So now we are not sure what to do.  I have learned a lot of information by researching these seizure disorders, I have also come across a syndrome that starts out with "autistic characteristics" and then they start having epeliptic seizures around the age of 2...please check out the site...LENNOX-GASTAUT SYNDROME.  I am hoping and praying that he doesn't have this syndrome.  Well, for now I need to go.  I will continue to update this site, please check back often.

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11:21:36 PM EDT
Feeling Hopeful
Hearing NONE AT THE MOMENT.

AUTISM:

AFFECTS ROUGHLY 1 IN EVERY 166 BIRTHS IN THE U.S. EVERY SINGLE YEAR.  WHEN YOU ADD IN THE AUTISM SPECTRUM DISORDERS IT DRASTICALLY RISES TO 1 IN EVERY 60 BIRTHS THAT WILL BE AFFECTED. 

THERE ARE 5 DISORDERS UNDER THE AUTISM SPECTRUM.

1.  AUTISTIC DISORDER.  2.  ASPERGERS DISORDER.  3.  CHILDHOOD DISINTEGRATIVE DISORDER (CDD).  4.  RETT'S DISORDER.  5.  PDD-NOS.

WHAT IS AUTISM?

AUTISM IS A COMPLEX DEVELOPMENTAL Disability THAT TYPICALLY APPEARS DURING THE FIRST THREE YEARS OF LIFE.  THE RESULT OF A NEUROLOGICAL DISORDER THAT AFFECTS THE FUNCTIONING OF THE BRAIN, AUTISM IMPACTS THE NORMAL DEVELOPMENT OF THE BRAIN IN THE AREAS OF SOCIAL INTERACTION AND COMMUNICATION SKILLS.  CHILDREN AND ADULTS WITH AUTISM TYPICALLY HAVE DIFFICULTIES IN VERBAL AND NON-VERBAL COMMUNICATION, SOCIAL INTERACTIONS, AND LEISURE OR PLAY ACTIVITIES.  (autism society of America)

WHAT CAUSES AUTISM?

THERE IS NO KNOWN CAUSE OR CURE FOR AUTISM.

THEORIES BEING INVESTIGATED...

1.  GENETICS.  2.  ENVIRONMENTAL FACTORS:  VIRAL INFECTIONS...METABOLIC IMBALANCES...EXPOSURE TO ENVIRONMENTAL CHEMICALS...MERCURY/THIMEROSOL...MMR VACCINE.

FACTS ABOUT AUTISM

AUTISM IS THE FASTEST GROWING DISABILITY IN AMERICA.  IN LESS THAN 10 YEARS, AUTISM WILL BE THE NUMBER ONE DISABILITY IN THE U.S.  IT IS THE SECOND MOST COMMON DEVELOPMENTAL DISABILITY (YET, NO ONE KNOWS WHAT IT IS!)  SYMPTOMS CAN RANGE FROM MILD TO SEVERE.  AUTISM IS 4 TIMES MORE COMMON IN BOYS THAN GIRLS.

SYMPTOMS OF AUTISM

NO BABBLING BY 12 MONTHS OF AGE

NO WORDS BY 16 MONTHS OF AGE

NO 2 WORD MEANINGFUL PHRASES BY 24 MONTHS

ANY LOSS OF ANY SPEECH, BABBLING OR SOCIAL SKILLS AT ANY AGE

RESISTANT TO CHANGE

DIFFICULTY EXPRESSING NEEDS

REPEATS WORDS OR PHRASES IN PLACE OF NORMAL RESPONSIVE LANGUAGE

LAUGHS, CRIES, SHOWS DISTRESS FOR REASONS WE CAN'T UNDERSTAND

PLAYS ALONE

TANTRUMS

MAY NOT WANT TO CUDDLE/BE CUDDLED

LITTLE OR NO EYE CONTACT

UNRESPONSIVE TO NORMAL TEACHING METHODS

SUSTAINED ODD PLAY

SPINS SELF OR OBJECTS

INAPPROPRIATE ATTACHMENT TO OBJECTS

APPARENT OVER OR UNDER SENSITIVITY TO PAIN

NO REAL FEAR OF PAIN OR DANGER

NOTICEABLE PHYSICAL OVER- OR EXTREME UNDER ACTIVITY

UNEVEN GROSS/FINE MOTOR SKILLS

NOT RESPONSIVE TO VERBAL CUES; ACTS AS IF DEAF THOUGH HEARING TEST IS WITHIN NORMAL RANGE

TREATMENTS/INTERVENTIONS

BEHAVIOR MODIFICATIONS

OCCUPATIONAL THERAPY

AIT

SPEECH/LANGUAGE THERAPY

VISION THERAPY

MUSIC THERAPY

GLUTEN FREE/CASEIN FREE DIET

CHELATION (REMOVAL OF HEAVY METALS)

ANTI-FUNGAL TREATMENT

VITAMIN THERAPY

IMMUNOTHERAPY

MEDICATION

CRANIOSACRAL THERAPY

HIPPOTHERAPY

ART THERAPY

PLAY THERAPY

SENSORY CHALLENGES

CAN BE EITHER HYPO-SENSITIVE OR HYPER-SENSITIVE TO OUTSIDE STIMULI

ANY OR ALL SENSES MAY BE AFFECTED...VISION,HEARING, TOUCH, TASTE, SMELL

COMMON BEHAVIORS IN CHILDREN WITH SENSORY DIFFICULTIES

ACUTE AWARENESS OF BACKGROUND NOISES

FACINATION WITH LIGHTS, FANS, WATER

HAND FLAPPING/REPETITIVE MOVEMENTS

SPINNING ITEMS, TAKING THINGS APART

WALKING ON TIP-TOES

LITTLE AWARENESS OF PAIN OR TEMPERATURE

COORDINATION PROBLEMS

UNUSUALLY HIGH OR LOW ACTIVITY LEVEL

DIFFICULTLY WITH TRANSITION (HARD TO 'GO WITH THE FLOW')

SELF-INJURY OR AGGRESSION

EXTREMES OF ACTIVITY LEVEL

FEARFUL IN SPACE (SWING, SEE-SAW, HEIGHTS)

STRIKING OUT AT SOMEONE WHO ACCIDENTALLY BRUSHES BY THEM

AVOIDANCE OF PHYSICAL CONTACT WITH PEOPLE AND WITH CERTAIN TEXTURES, SUCH AS SAND, PASTE, AND FINGER PAINTS

MAY REACT STRONGLY TO STIMULI ON FACE, HANDS AND FEET

SHORT ATTENTION SPAN, EASILY DISTRACTED

STRONG DISLIKE OF CERTAIN GROOMING ACTIVITIES, SUCH AS BRUSHING TEETH, WASHING FACE, HAVING HAIR BRUSHED OR CUT

UNUSUAL SENSITIVITY TO SOUNDS AND SMELLS

MAY REFUSE TO WEAR CERTAIN CLOTHES OR INSIST ON WEARING LONG SLEEVES/ PANTS SO THAT THE SKIN IS NOT EXPOSED

FREQUENTLY ADJUSTS CLOTHING, PUSHING UP SLEEVES AND/OR PANT LEGS

MY PERSONAL EXPERIENCE

MY SON WAS NORMAL AS AN INFANT.  HE WOULD SIT AND SMILE AT HIS DADDY AND I.  HE WOULD COO AND COO WITH DIRECT EYE CONTACT.  I LOOKED AT ONE OF MY DIGITAL VIDEOS YESTERDAY THAT I HAD FORGOTTEN I HAD TAKEN OF HIM WHEN HE WAS MAYBE 2 MONTHS OLD.  HE WAS REALLY INTERACTING WITH ME...IT BROKE MY HEART AND FILLED ME WITH JOY AT THE SAME TIME.  HIS EYES ARE SO BRIGHT AT TIMES, THEN THERE ARE THOSE OTHER TIMES WHERE YOU CANNOT EVEN GET HIM TO BLINK BACK INTO REALITY.  HE CARRIED A SPOON EVERYWHERE.  HE PLAYED WITH IT, HE WENT OUTSIDE WITH IT, AND AT NIGHT, HE SLEPT WITH IT, TOO. 

THIS IS REALLY HARD FOR ME TO SHARE WITH EVERYONE.  I KNOW A LOT OF YOU WHO WILL BE READING THIS.  THERE ARE A LOT OF THINGS I WANT TO SAY WHEN WE ARE TOGETHER, BUT, I AM JUST NOT STRONG ENOUGH TO NOT BREAK DOWN AND CRY WHEN I TALK ABOUT MY LITTLE MAN.  FOR MY FAMILY THAT IS NOT CLOSE ENOUGH TO BE HERE AND GET TO KNOW HIM, HE IS THE SWEETEST BABY IN THE WORLD...THE PAIN HE GOES THROUGH THAT NO ONE ELSE REALIZES IS UNREAL.  THE SIMPLE THINGS THAT YOU AND I NEVER EVEN THINK ABOUT- ARE TERRIBLE FOR HIM.  HE CANNOT TOUCH A LOT OF THE THINGS THAT WE CAN.  PORK SKINS PUT HIM IN A FULL BODY SHAKE, JELL-O MAKES HIM SHAKE HIS HEAD BACK AND FORTH REPEATEDLY.  HE OFTEN COVERS HIS EARS AS IF HE CAN'T TAKE THE NOISE ANYMORE (AS YOU KNOW, IT IS ALWAYS LOUD AROUND HERE!)  AND HE WILL SCREAM TO DROWNED OUT THE NOISE.  HE IS VERY PICKY ABOUT WHAT HE EATS, AND I DON'T THINK IT IS JUST THE TEXTURE.  HE WILL LOOK AT WHAT IS ON THE PLATE, AND IF IT IS SOMETHING THAT DOESN'T LOOK "NORMAL" TO HIM, HE WILL JUST GET UP AND LEAVE THE TABLE.  HE DOES A LOT OF BLANK STARRING.  USUALLY OUT THE WINDOW, SOMETIMES AT A WALL, AND A LOT OF THE TIME, HE ISN'T LOOKING AT ANYTHING.  HIS DR. DOES BELIEVE THAT HE IS HAVING SEIZURES, AND THAT IS WHY HE STARES AT NOTING.  LATELY, HE WILL DO ALL OF THIS HAND FLAPPING AND HEAD SHAKING.  IT IS SOMETHING THAT BOTHERS ME BECAUSE IT MAKES HIM LOOK LIKE HE HAS AUTISM.  HIS THERAPIST TOLD ME NOT TO TELL HIM TO STOP...SHE WANTS ME TO DISTRACT HIM AND DIVERT HIS ATTENTION TO SOMETHING ELSE.  HE HAS GOTTEN SOMEWHAT BETTER WITH THE DRAWER SLAMMING OVER AND OVER.  HE STILL LIKES TO SLAM DOORS, AND CABINETS FOR A FEW MIN. BUT IT IS TOLERABLE NOW.  HE STILL HEADBUTTS WALLS AND STUFF AND HE STILL SPINS IN CIRCLES.  I DO UNDERSTAND THAT HE 'NEEDS' TO DO THIS BEHAVIOR BECAUSE IT HELPS HIM FEEL WHERE HIS BODY IS.  HE LIKES TO WEAR A HEAVY BACK PACK, AND HE LIKES TO BE MADE INTO A 'TACO' WITH EITHER A PILLOW OR PERSON LAYING ON HIM...FOR THAT DEEP PRESSURE SENSATION THAT WE DON'T EVEN REALIZE WE GET EVERY DAY.  HIS THERAPIST DO A LOT OF THINGS TO HELP HIS SENSORY ISSUES.  THEY BRUSH IS ARMS, LEGS, BACK WITH A SPECIAL BRUSH, AND THEN THEY TAKE HIS JOINTS AND PUSH THEM TOGETHER.  THEY BRING IN JUMPING EQUIPMENT, AND SPINNING EQUIPMENT.  WHEN JACK SPINS, HIS EYES LOOK THE OPPOSITE DIRECTION FROM THE DIRECTION HE IS SPINNING.  WHEN NORMAL PEOPLE ARE DIZZY THEIR EYES MOVE BACK AND FORTH REALLY QUICKLY UNTIL THE EQUALLIBREIUM IS STABILIZED.   JACK IS SO UNDERSENSITIVE TO THE SPINNING THAT HIS EYES CANNOT DO THIS.  MY BABY CAN UNDERSTAND "BYE-BYE" HE WILL BE READY TO HEAD TO THE DOOR WHEN HE HEARS IT.  HE UNDERSTANDS "BATH" AND WILL SCREAM UNTIL YOU GET HIM UNDRESSED.  HE UNDERSTANDS "EAT WITH SIGN LANGUAGE" AND WILL COME TO THE TABLE.  BUT THAT IS AS FAR AS HIS RECEPTIVE LANGUAGE GOES FOR NOW.  HE CANNOT UNDERSTAND "STAND UP" OR "SIT DOWN" WITHOUT YOU TAPPING THE SEAT OR LIFTING HIM TO STAND.  HE CANNOT UNDERSTAND STOP.  SOMEONE ONCE EXPLAINED IT TO ME LIKE THIS....WHEN YOU CALL AN AUTISTIC CHILD FROM ACROSS THE ROOM ALL THEY HEAR IS  ^#@ &^%4 *$% .  I DO GET ON TO HIM WHEN HE DOES SOMETHING HE KNOWS IS WRONG...BUT, THERE IS NOT MUCH HE UNDERSTANDS AS FAR AS THE LANGUAGE PART IS CONCERNED.  HE UNDERSTANDS "NO" AND THAT IS A BIG HELP.  HE JUST DOESN'T UNDERSTAND WHY WE ARE TELLING HIM "NO" AND SO HE GETS EXTREMELY UPSET.  JACK MAY NEVER LEARN TO TALK LIKE WE DO....BUT WE ARE GOING TO DO OUR VERY BEST TO MAKE SURE HE CAN AT LEAST COMMUNICATE SOMEHOW.  THAT WILL BE OKAY IF HE NEVER GETS ENOUGH LIFE SKILLS TO LIVE ON HIS OWN....HIS DADDY AND I ARE PREPARED FOR THAT....WE HAVE TALKED ABOUT IT AND KNOW THAT IT IS A VERY GOOD POSSIBILITY FOR THE FUTURE.  YES, IT IS A DISAPPOINTMENT IN A WAY...WE ARE GOING TO WANT A BREAK IN 16 YEARS....AND MAYBE IT WILL HAPPEN- YOU NEVER KNOW!  BUT, THAT IS JUST PART OF AUTISM, YOU TAKE THE GOOD WITH THE BAD, THE BAD WITH THE WORST, AND ALL THE THINGS IN BETWEEN.  JACK IS SUPER SMART, I CAN SEE IT IN HIS EYES...HE IS A THINKER.  HE WANTS TO KNOW HOW THINGS WORK, HE STUDIES FANS, AND TOYS THAT HAVE MOVING PARTS...YOU CAN SEE HIS BRAIN WORKING OVERTIME. 

IT IS NOT FAIR WHAT IS HAPPENING TO JACK....HE IS THE STRONGEST LITTLE MAN I KNOW.  HE FIGHTS SO HARD EVERY DAY TO LEARN WHAT I AND THE THERAPIST ARE DRILLING INTO HIS LITTLE HEAD.  WHEN HE MASTERS ONE OF HIS SKILLS....YOU JUST SIT THERE IN AMAZEMENT AND A SENSE OF RELIEF COMES OVER YOU.  YOU HEAR SO MANY QUALIFIED PEOPLE TELL YOU THAT HE IS ALWAYS GOING TO BE THIS WAY...AND THEN YOU SEE IMPROVEMENT (VERY SMALL-BUT IMPROVEMENT) AND YOU GET THIS HOPE DEEP IN YOUR HEART THAT ONE DAY, HE WILL WALK UP AND TALK TO YOU...LIKE THE REST OF MY BABIES..."GOOD MORNING MAMA"...."I'M THIRSTY- CAN I HAVE SOME MILK?"  AND NOW, I SIT HERE CRYING, BECAUSE I KNOW....HE WILL NEVER TALK LIKE THAT...SIGN LANGUAGE, A COMMUNICATION BOARD, THE PECS SYSTEM...THAT WILL BE HIS WAY OF TALKING TO US.  I HAVE BEEN BLESSED (MORE THAN I KNEW IT AT THE TIME-WISH I HAD IT ON VIDEO) BY BEING ABLE TO HEAR HIM REPEAT "I LOVE MY MAMA" WHEN HE WAS 1-1&1/2...AND NOW THAT IS GONE...LOST TO HIM- AS A LOT OF HIS SMALL VOCABULARY HAS BEEN.  I AM STILL GOING TO KEEP PRAYING FOR A MIRACLE AND HOPING THAT GODS PLAN CONSISTS OF A COMPLETE TURN AROUND FOR MY BABY.  I KNOW ALL OF THE FAMILY PRAYS FOR HIM...HIS GRANNY AND POPPY, HIS PAPAW AND MEME, HIS GRANDMA MARLA AND GRANDPA ALLEN, HIS MAMAW AND PAPAW ALLRED, HIS PAPAW AND ESTELLE...THE LIST GOES ON AND ON AND ON....LIKE I SAID, I AM HOPEFUL, AND FAITHFUL.  I DON'T UNDERSTAND "WHY HIM"....AND I NEVER EVER WILL...BUT, I AM NOT THE ONLY  MOMMY OUT THERE WONDERING THE SAME THING.  AUTISM...SPREADING LIKE WILDFIRE ON OUR KIDS...AND NO WAY TO STOP IT.  JUST DOESN'T SOUND RIGHT.  I KNOW THAT JACK LOVES ME, LUCKILY FOR ME, JACK LOVES TO CUDDLE AND GIVE SUGARS.  EVERY MORNING WHEN HE WAKES UP...I PICK HIM UP, TELL HIM "I LOVE YOU JACK" AND HE HUGS MY NECK LIKE HE NEVER WILL LET GO...IT IS THOSE MOMENTS THAT I KNOW HOW MUCH I NEED HIM IN MY LIFE....HE GIVES ME A NEW SENSE OF WORTH.  I KNOWTHAT I HAVE TO BE HERE FOR HIM NOMATTER WHAT MAY HAPPEN INMY LIFE TIME.  WHAT WILL HAPPEN TO HIM IF I DIE?  WHO WILL BE HERE TO TAKE CARE OF HIM?  NO BODY WANTS THE RESPONSIBILITY OF TAKING ON A SPECIAL NEEDS CHILD.  WHO HAS TIME TO SPEND 5 DAYS A WEEK DOING THERAPY?  EVERY SINGLE PARENT OF SPECIAL NEEDS CHILDREN ARE FACING THESE SAME QUESTIONS.  I REALLY HOPE THEY COME UP WITH SOME GREAT CURE FOR AUTISM...BOY, WOULDN'T THAT BE NICE?! 

WELL, TO END THIS JOURNAL...

THANK YOU TO ALL WHO TOOK THE TIME TO READ THIS.  I HOPE YOU FOUND SOME USEFUL INFORMATION.  IT IS HEARTBREAKING TO GET AN AUTISM DIAGNOSIS...BUT, DON'T DISSPARE...TALK TO SOMEONE, FIND A SUPPORT GROUP, GET YOUR CHILD INTO EARLY INTERVENTION THERAPY.  PLEASE VISIT autismspeaks.org FOR MORE INFORMATION OR TO MAKE A DONATION TO FUND AUTISM RESEARCH. 

GOD BLESS.

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