Autism and Seizures

My Autistic son has suffered from seizures since he was about 8 years old.  At first they just were black outs followed by extreme migraines and stomachaches.  He was evaluated for migraine and wasnt found to have migraine but to have post ictal headaches.  (Post seizure).  He has had several times where he has just frozen or started drooling for no reason and then we are caught with a headache.  Lately since he is 16 and in the midst of puberty his headaches and stomachaches have gotten extremely worse.  We have seen his neurologist and we changed his medicine to Depakote and have increased his dose twice.  I just wrote his neurologist (I love him I can contact him via email)    To ask what to do this is his second day out of school in four days.  He is miserable with the headache and stomachaches.  The research I have done is that many children with Autism start having seizures or more seizures during puberty.  Would love to hear from other parents whose children have autism and suffer from seizures.

Well all for now

A Tragedy, the loss of a Child.

Well things are up on the Asperger front.  My Gay 17 year old Aspie hooked up online with a 21 year old Man from Canada.  They chatted online for two months and decided they were going to get married.

QA lot of drama ensued, me being kicked on and off of his facebook, kicked on and off his fiancées facebook and being told off by his fiancée to name a bit.  Well he begged and pleaded for me to buy him a ticket to Canada so he could go live with him.  OK get this he’s a 17 year old high school drop out.  On probation for Assault with me, supposed to be going to anger management training and taking his medicine for Bi-polar.

So I buy him an early Christmas gift which he begs me for, I give it to him early , he professes to love it.  The day comes for him to leave and I buy him dinner for his trip and he gives me the best hug I have had in years, then I leave.  Fully Expecting to hear from him when he hits Canada.

I hear from his fiancées dad that he has made it to the border but he has lied to them saying that hes visiting his dad because he doesn’t have a passport.    That they may be calling me.  They did I did as I was asked and kept to the story (boy was I wrong in hindsight) and they let my son through without a passport.

My son makes it to a town in Canada and is told to wait there until 730 for his fiancées dad.  He cant wait hes scared he tells his fiancée, so his fiancée tells him to hitch-hike the 90 miles to Ottowa.  So what does he do he hitchhikes.  When His fiancées dad hears this he sends a cop out that he knows and they track him down and bring him to Ottowa.  Meanwhile I haven’t heard hide nor hair from him.

Today three days later I call the dad to get a status and get his machine.  I come back to work to find an email from my son saying he left because I stress him out, he has started a new life up there and doesn’t want me in his life anymore and by the way I am not invited to his wedding and to leave him alone forever.

I honestly don’t know what to say.  I wrote him an email asking what the meaning of all this was and that he had left on good terms, but haven’t heard back from him.  I don’t know if I ever will.  I feel like my hearts been torn out.

The Day after halloween Part 3

OK my titles are starting to sound like cheap horror movies...
I got a call at work I could hear Kole cursing and yelling at his aide to leave the house.  The aide is saying things not appropriate to say to my son when he is amped up.  Saying things like "Im not going to take you out acting like that"  I corrected him to say that "when you are calm we will go putt putt golfing."  Kole came home all pissed off from having to write words "100 times Mom, I hate that school."  Koles caregiver after reassuring calls from my family trainer finally got him calmed down.  By the time I got home at 4 they were already gone to putt putting.  During the relative peace and quiet (ok I am not counting the drama that my other sons boyfriend/fiancee was causing) I got a call from a police Captain over an iniative that I have started in the county police department here.

He wanted to discuss two things, the Autism Registry, and the Training of the local police.  He said right now they dont have funding for the Autism Registry.  OK now I have to put my grant writing skills to work.  We discussed training, what subjects would be taught and his way of getting my foot in the door by meeting with all the district Chiefs at the Chiefs meeting this month.  He also gave me some selectmen to contact for funding.  All in all we had a good conversation.

Kole came home from his favorite putt putt clutching a bag from Burger King (great there goes the dinner I cooked).  His other Aide knows not to let him buy Burger King without asking me.  Sometimes I feel like I have to train these people constantly.  Its hard enough to find a good aide, but then they start to slip up and do things like making personal phone calls while at work, using your phone charger from your room, etc..Forgetting to do homework with your son.  SO now I am going to make a picture schedule for my aide.

At lease we are lucky enough to have aides.  Kole is too old for daycare and he cant be left alone.  His brother hides in his man cave all day long and refuses to help with his brother because he cant handle him.

Kole went to bed alright.  At 7 he said it was time for bed and we went into tuck him in.  some tickling later he was settled down and went to sleep.

Finally a peaceful night... to be continued

Halloween Part 2

I know it sounds like a horror story, it was of sorts.
     Kole was scheduled for his brain and optic nerve MRI today at 1145. I think great well be out of there after his sedation wears off by 330 latest , then we can come home eat dinner and go trick or treating.  Well they didnt get him sedated until 130 pm, then they kicked me out to the waiting area.  At 4 I went back there and was told they had problems fitting him into the machine.  OMG I told them his weight when they interviewed me on the phone.  They finally paged me at 445 pm.  Good thing I bought him dinner because we were cutting it close for trick or treating.  I told the nurse who was recovering him he wanted to trick or treat and she said it isnt happening tonight.  Oh no I thought, 59$ on a costume, and an excited autistic son.  By the time he started waking up it was 515.  The first thing I told him was we werent going to be able to go trick or treating.
   "NO" he howled like a 5 year old.  "I want to go trick or treating".  Repeated every four seconds.
I suggested that we got to the store and buy him some candy.  He seemed ok with that and said four bags.  I said ok and thought it was over.  Believe me it wasnt.
     Once he got into the wheel chair he started perseverating on trick or treating again.  Constantly whining and saying he wanted to go trick or treating and ho I promised him.  OK I have raised a 16 year old Autisitc boy since birth and I know better than to promise anything.  I know for a fact that I didnt promise him.  As we get closer to the house and giant foods for the four bags of candy he gets more and more combative, hitting the window of the car to get his point across that I promised him.  I hate you he said, I want to go live with my dad.  (Just what I dont want to hear)  He hits me as the light turns green, I tell him if you keep hitting me we arent getting your candy.  We get to the store parking lot and he announces that hes walking home.  I told him we are going in to the store.  He gets out and slams his door.
    I calm down and get out of the car, while he is kicking and hitting me while we are walking into the store.  I am thinking I thought he grew out of this.  He is pulling my hair now, I am correcting him no hitting, no kicking people are staring.  I wish they would help me at this point.  I even try to talk to a police man who ignores me to see to a child in costume.  Can't you see hes hitting me?  Why cant the police be trained?
We get int he store and Kole announces he is running away, I told him fine no candy and I walked away around the other side of the store.  I met him in the candy aisle as he was making his four choices.  He hands me the basket and tells me to hold it I tell him its his candy he has to hold it.  I am still shocked because of his behavior.  He chooses 6 bags, I tell him to take two out.  He finally decides on four and then hits me upside the head.  Will it ever stop?
     We go to the register and he remembers he wanted a drink and heads off to the soda aisle.  As I am scanning the first bag he walks up carrying two bottles of bubblegum soda and a bag of candy.  I tell him to put one jug and the candy away and tell him to bag the candy. He is still telling me he hates me.
We walk out as he is telling me how much he hates me for not going trick or treating.
       We get to the car and he starts hitting the window again, We finally get home and he grabs my phone and throws it up against the apartment house.  Great I think just what I need a broken phone.

I pick up the phone and he grabs it and throws it under my car.  I grab the candy from him and pick up what I can see of my phone and march inside with him hitting and kicking me because he wants HIS candy now.
We get inside and I have my older son go look for my battery meanwhile Kole gets the idea of going after a knife (something he hasnt done since two years ago).  He throws it down the hall at his brother.  I have had it now and tell Kodi to call the cops.  Meanwhile I am trying to get his meds together so hopefully they will take effect soon so he will be out with the residual sedation.  He continues to hit me and swings at me with his glass bottle.  I call the cops, who transfer me twice (Really?)  Then Kole goes out to the deck and curls up in a ball.
The cops show up and ask if hes taken his meds and I told them if I could get them in him hed calm down in 15 minutes of so.  At this time Kole is hiding under his blanket and talking like a five year old, whining, "no no no."
The police ask me if I want them to move him inside because it is cold outside.  I said yes but try not to hurt him and do it gently.  They pick him up and he willingly walks inside.  Then he takes his meds.  By now he is deescalating and wants to show the police his candy.  He even offers the police some pieces of candy. We close the night with him walking down the hall to his bedroom at 715.

Such is part two of our Halloween night.  Definately not what I or Kole wanted.

Halloween Costume Hunting

Halloween Costume Shopping with ASD

So after many days of MOM don’t forget I have a party in school on the 27^th, I finally got paid so I could bring my autistic son into the costume shop to get his costume this year.  I first knew something would be wrong when we entered the door and it was so crowded and Kole was already loosing me in the throng of people.  “Where’s the costumes Mom?”  Kole asked impatiently.  I said in the back of the store lets hurry I said so we can go get dinner and do your medicine on time.  We make our way to the back of the store (OK little did I know at that time that the throng I passed was actually the line to get the costumes).  We finally make it back to the mens section.  Now the hard part he has to decide.  “Ok mom I cant get any of these they are too scary or have blood on them”  Ok Kole how about being a bottle of Catsup?”  “That’s stupid Mom”  Alright I wont suggest anymore.  He finally after what seems like an eternity picks out a costume and we head off to the end of the long line, meanwhile Kole is repeating the numbers out loud to the costume he wants.  $59 dollars really?  I thought out loud.  He originally wanted to be a gorilla which was $79, I couldn’t see spending that much on a costume he will wear twice.  So I said no to that choice.  So we get in the line.  Kole is still repeating the numbers out loud 1209, 1209, after an eternal 20 minutes it is our turn to ask for our costume Kole excitedly says 1209 please!  The salesman simply says no four number costumes.  Really?  I thought now what do we do?  I see a display with “morph suits”  I say to Kole pick one of these and be quick.  He picks the mummy, but they don’t have his size, so I finally step in and say what do you have in XL?  They said a green morph suit.  OK well take it.  Kole is protesting that it isn’t what he wants.  Then we make our way to the front t of the store, great I think no line,  ooooh was I mistaken, the line stretched all the way down one aisle.  Really?  More waiting?  Meanwhile Kole is trying to read the package.  What does this say mommy?  I read to him that the red suit says large if you are 5’6 to 5’ 10 and the blue suit says 5’10 to 6’3 for xl.  I told him we got the right size.  He asked if he’ll be able to see through it.  I said it is like his body sock so it will give you pressure while you are wearing it and you will be able to see and walk in it.  We finally check out and head home.  At home we attempt to put this big green suit on over his sweats.  OK picture a 5’ tall woman dressing a 5’10 260 lb 16 year old, it was funny.  “Ok slide your foot in there like that.” I said.  We got it up to his hips and it seemed to get a bit stuck.  I shimmied it and pulled it and finally got it up over his shoulders but then it looked like it wouldn’t zip.  “Zip me mom” comes a cry from Kole.  “Ok let me try, we might have to wait until Halloween to zip you.”  “No I wasn’t to be zipped now”  so I pull and squeeze the fabric tight enough to allow the zipper to come up inch by inch. And finally it zips up leaving a tuft of hair sticking out the top of the suit.  He goes and shows his brother who actually says something positive to him…to be continued....

One Mothers Story The History

I live my life every day with two sons who have Autism.  One has PDD NOS and the other has very high functioning Aspergers.  Doctors have always asked me when did I notice something different with my children.  Well both were polar opposites.  My oldest boy couldn't stand to be touched or held.  He would lay down next to you as a baby but if you picked him up hed scream.  When my youngest son was a baby he only wanted to be wrapped tightly and had to be held or he'd scream endlessly. 

My oldest was a very picky eater, didn't sleep at night, had terribly tantrums and tried hurting his brother and had problems with rules in school.  He wasn't diagnosed until he was hospitalized at age 9.

My youngest was nonverbal until age 5.  People told me he was Autistic but I didn't believe it.  I didn't know what Autism was then.  He would do this thing we called Kole radar.  He'd point and scream if he wanted something, the closer we got to his want he'd get louder.  He would physically drag me to something he wanted.  He had major troubles in daycare.  If they were doing sensory play he would overstimulate and then throw objects and hit and bite people then go hide and then bite his caregivers.  He spent a lot of time in the directors office.  They suggested Autism to me.  I was still in denial.

At age 9 he acquired sentences and we moved to a new state.  At his well child checkup the doctor matter of factly told me he has PDD and I needed to see a developmental pediatrician.  (by that time he had been diagnosed with speech and language delays, developmental visual problems and sensory integration disorder),  They thought he had ADHD and I was medicating for that to little avail even though we were on the highest dose.  The develop mentalist said it wasn't possible for him to have adhd, he sat in his own world for three hours at his office and didn't interrupt once.  He agreed with the PDD NOS diagnosis. At 9 he was still not reading at all.  He had very many problems in school, he would only do well working alone with head phones on at the computer.  By this age his stims had calmed down, he used to stim when he was very young, I didn't know rocking was an autistic trait.  Or that his collections of various items were his obsessions.  He always had a hard time transitioning to go home from daycare.  He wouldn't hear me when I called for him or he would lay down and have a meltdown.  It was always very hard to get him to go places.  At the age of nine I really started avoiding bringing him places, the grocery store was particularly hard because he wanted everything.  At age 9 his behaviors that he had been having sporadicly became uncontrollable.  He broke my windshield of my truck, he would chase us with sticks, he would break everything in the house, he lit fires, he would have meltdowns in public every time we went somewhere.  I tried a behavioral therapist through the county, and through the develop mentalist who saw him attack me in her office.  I got them both to recommend Kennedy Krieger Institute in Baltimore for their outpatient Neural Behavioral Unit.  He went there for 3 days a week for 6 months.  They said he had atypical Autism (PDD) and said he had Self Injury, and a behavioral disorder.  They wrote a behavior plan and had me start a token system with him.  That was a lot of work. But it worked for some time combined with aggressive medical therapy.

Now hes 16, he just started rocking again because school is too stressful for him. He has always stimmed by throwing objects, but now his stims are getting worse. He is very dependent on me, I got him an IPAD for his communication and he took to it very fast. He loves the AutismExpress application for emotions.  He has never communicated his emotions before in an appropriate manner and now he is using the IPAD. He is so dependent that I am called to him after every time I sit down.  I try to keep my frustration with that down but some days are worse than others.  Since he cant spell still I have to type things on his Ipad for him.  And when his only friend texts him I have to text back what Kole is saying.  We found a great Church that has a developmental disabilities class for 16 and up he is doing great with accommodations in there. He needed fidgets to stop from stimming and to help him pay attention.  How is my other son doing?  He was so high functioning he never tested autistic at school so we never got accommodations for him.  He has severe bi-polar so that has taken the forefront.  He is very abusive especially to his brother.  His sensory integration dysfunction has gotten way better with age.  He still doesn't like hugs or any affection at all and prefers to be alone or on the computer with facebook.  My house is very chaotic.  Kole still yells for things, we are working on that with his current behavior specialist.  He recently learned how to turn on the shower for himself and has become independent on that .  His reading has picked up now he is at a 1^st grade level.  (hes in 9^th grade)

I am sure he will be with me for a long time, I don know if he will ever be independent enough to live on his own.  But hes progressing and learning new stuff every month.  We have 1:1 aides for him and they have helped with the behaviors greatly plus he gets out to the community and I get a much needed break.  Would I change my life with Autism?  Never, it has made me a more patient mom, and more understanding.  The only thing I would have liked to do was to listen to the people who told me Kole had Autism at age 4 we would have gotten services way earlier for him and maybe hed be reading by now. 

Im Jenny Holloway and I am a single mom of three kids, two with Autism.