Santa Claus is a Fraud

I have sometimes thought my son to be a secret genius. It is a well kept secret from the outside world, but at home he has some uncanny abilities considering all of the difficulties he has to deal with.

Recently he was chosen to receive an iPad from Autism Speaks and to say he loves his iPad is an understatement. To him, his day revolves around iPad time and he is learning so much.

But in the midst of all the normal stuff, he has exhibited some crazy voodoo iPad skills that he has never been taught. Where does this come from? He has tried to download apps and would have succeeded in purchasing them if he knew my iTunes password. I have a hard time believing he could memorize my password and input it in the small little box, but still I tilt the iPad my way when entering my password – you can’t be too safe.

Also, once in a blue moon I have to set an alarm and he somehow knows. Seriously, the only time the child has ever slept in is if I have an alarm set. Then I have to wake him up. This is painful. He still does not sleep through the night at 5 years old and is up at the crack of dawn – unless I set an alarm. He knows and purposely sleeps in just to mess with me.

So with all this going on, is it no wonder I thought for sure he was a genius when his sister and I overhear him playing is his room this morning:

He is playing with a ribbon and chanting “Santa Clause is a fraud.”

My daughter and I looked at each other in shock and truthfully we were a little creeped out. This instantly turned into pride, as I contemplated how right I had been about his secret genius.

Then, Brooke, who is still listening at his door, says “oh, he is saying, ‘Santa Claus is a frog.’”

Yep, that makes more sense.

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Church, Sunday School, and Autism

Attending church with a special needs child can be very stressful and sometimes almost impossible, depending on their needs and behaviors, and willingness of the church to be compassionate and flexible.

We have been going to the same church with my son since he was an infant, but familiarity has not made things easier for him.  First he just was held in service. Then one of his sisters or I worked in the nursery during Sunday school and so a family member was always there with him.  If we weren’t, all hell broke loose.  Unfortunate wording based on the context of church, my awful attempt at a pun, or just the truth?  You be the judge based on his behaviors:

  • dumping every toy bin in sight – destroyed the place in less than 2 minutes
  • dragging all furniture and kitchen play pieces across the room and stacking them
  • putting all preschool chairs in a line from the door
  • if he did pay attention to another toddler, it was in their face and if they didn’t respond he hit them in the face :(
  • if another adult stopped by the nursery room door to say hi or check on their child, which was often, he would start yelling, throwing things, or some other charming activity.  We tried holding him and distracting him, but it made it worse.
  • If another nursery volunteer spoke to him or even looked at him (he is cute, people stare :-)  he pulled his pants down.  Yeah, odd.  Not sure why, but he was so uncomfortable and had no idea what to do with himself, so he would try and strip.

It was probably worse than it sounds.  Really.  Now he is five and  we have taken a break from the nursery after working in it for over 5 years.  Even during the mid week service, his autism and behaviors caused me to hide in the nursery with him.  A blessing to a church that always needs nursery help, but not great for fellowship and I haven’t attended a formal Bible study in 4 years.

It is hard, I felt isolated, and honestly it is sad when the other children in the church turn 3 and move on to Cubbies in AWANAS and I knew Jaden couldn’t be a Cubbie.  He didn’t want to be a Cubbie though.  It was me who was sad.  Not him.

In our church the preschool Sunday school teacher was very welcoming to have Jaden attend her class.  Her one requirement was that he be potty trained.  His 4th birthday came and went before he was ready to give this any serious attention.  By four and a half he was trained and ready to go!  He now goes to Sunday school with his almost peers.  He is five and the five year olds have since moved on to a Kindergarten class and my son is still in the preschool class.  And there are struggles.  But that is for another post.  For now I am happy he can attend, his teacher is kind and brave.  Most of all she is understanding, even if she doesn’t always understand.

Sometimes what you think is impossible one year, is happening the next.  Guess we shouldn’t give up hope or assume our kids can’t do something.  My son is walking, talking, and potty trained.  All things that seemed impossible at some point.

~ Susan

Different but not less. – Temple Grandin

 

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Little Keeper Sleeper – Stop the removal of sleepers and diapers!

My son has been wearing Little Keeper Sleepers for about two years and I don’t know how we survived without them.  Of the three options for “backwards sleepers” I have found available on the web, this one seems to get the most use at my house.  The main reason is its availability in a short sleeve model.  We live in an area that gets very hot in the summer and normally a very light shirt and shorts or onesie would be normal bedtime apparel, but Jaden needs to wear his safety sleeper year round!

Also, a couple of years ago his propensity to strip started to happen 24 hours a day.  That’s right.  Seriously, I barely take my eyes off the child, but somehow he knows.  Eventually even moms have to go potty, and even when he is sleeping, he knows I have left the room.  I will spare you the gory details.

So soon, Jaden starting wearing his safety sleeper 24 hours a day.  It really cut down on laundry and all the time his big sisters and I would spend trying to decide on what adorable outfit he would wear.  Unless we were leaving the house, he wore his sleeper.

Better safe than sorry. . .

Pros of Little Keeper Sleeper:

  • soft cotton material
  • well-made and durable
  • washes nicely
  • available in short sleeve and footsie model
  • the back zipper is also covered in snaps
  • goes up to size 7/8 (hoping and praying I won’t need them by then, but glad the option is there)

Cons:

  • only one color – boring
  • when they were a little too big, they could be slipped off the shoulder.  Make sure to buy the right size.

There is not a affiliate program available so I will just give you a link to their website to go check them out.

http://littlekeepersleeper.com/store/Default.asp

 

 

 

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Sleepers for Special Needs Children, and other kids who like to strip at night

My son started stripping at night kind of young and I was able to curtail his late night escapades fairly easily at first.  He was very delayed, and I was able to stay one step ahead. But soon his fine motor skills improved and it was necessary to up my game.

This was the progression I took in my attempts to keep his diaper on:

  • Duct Tape across the diaper – easy
  • Put a onesie on, always, as he can’t undo the snaps
  • Duct tape across the onesie snaps
  • Overalls during the day, covering the onesie and duct tape of course
  • sleeper at night – he can’t undo a zipper
  • backwards sleeper at night – cut feet off

The sleeper has to have a fairly high neck at this point because he has realized the he can somehow slip the sleeper off the shoulders if it is loose.

Keep in mind that Jaden doesn’t sleep much so he has the time to try new things.  Finally at the end of my rope, I started searching on Google for any kind of sleeper or special pajamas made for this problem.  I can’t be the only one!

I was able to find three different companies that made non escape sleepers.  I have bought them all, and each one has its pros and cons.  I will review them in the next few post.  Jaden is four and he still wears them. :-)

~Susan

 

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Stephanie’s Day – Autism and Special Needs Resource Fair

Last week we ventured out to Los Angeles area to attend Stephanie’s Day 2012, an Autism awareness and resource day held at CBS KCAL in Studio City, CA.  I had my daughter with me to help with Jaden and his fancy new Baby Jogger F.I.T stroller, and I may have been feeling a little over confident.

Upon arrival my daughter and I spied the first indication that it was not going to be a good time for any of us.  There were balloons.  Ya, you may be wondering what the problem is, but my son has a love/hate obsession with the evil things.  As we casually strolled into the event they had multiple friendly volunteers passing out balloons to everyone.  Jaden started repeatedly asking for one, but there is no way he could have one now.  He will have a problem with the color, with the ribbon, with the location of it too. Then he will probably not be able to handle it being tied to his wrist, no that would be too easy.  So it of course will somehow fly out of his little hand and float away in the beautiful California sunshiny day.  No, we talked him out of it, with the promise a balloon on the way out.  How, you say?  Well, it wasn’t easy, and there was much bribery and sleight of hand, but we passed by the balloon station and continued on.

I forgot to mention that there was 61% humidity today, so we were all a little cranky.  Not only was the air hot, but my massive head of curly hair was not going to handle this lying down, no matter how much frizzy hair serum I applied.

And, in case you were wondering,  one of my pet peeves at Autism events:  Why is there always blaring music, with a horrible jarring beat, so loud you can’t hear yourself think?  Seriously, these kids are autistic, and have sensory issues.  Did anybody stop to think what is annoying to the parents is painful and unbearable to our children?  Jaden started asking to go home and became very agitated.  I spotted several kids in strollers with their hands cupping their ears, which my son does on occasion too, but this was them trying to survive.  Okay, I am almost off my soapbox, but if anyone from an autism event ever reads this blog, please take note:  If a special needs dance troupe or singing group is on stage, then by all means, we want to hear them and offer our support, but continuous obnoxiously loud music from the 80′s is a blessing to no one.

So the positives?  There were lots of resources, most not available to us, since we live in the Antelope Valley, and as I was repeatedly told, “we don’t go out that far.”  But still, I was excited knowing that if I ever realize my dream of moving out of the AV there are some really great things going on for Autistic families in L.A. County.  I will try and mention a few on the blog as I can.

Most helpful to me was the booth about AYSO soccer league, which has soccer teams for special needs kids!  Jaden has so few places he can go and be himself without the roof caving in.  He has mild CP, visual impairment, and autism, and the organizer seemed to think he was awesome and would fit right in.  They turn no one away.  Even though I can’t imagine him playing soccer at all, and in fact the whole thing just seems hysterical to me, I just really want to see them try and get my son to play soccer.  He still has to sit in a high chair to focus enough to eat a meal.  And there has to be a spotter nearby so he doesn’t climb out.

We actually were there and gone in about an hour, although it seemed like at least two.  Ya,we had to get the balloon, and that didn’t end well.  Then we had to find a Starbucks, which was part of the bribe for waiting for the balloon.  Jaden likes the strawberry lemonade as a treat, and I am partial to their caffeine.

~ Susan

 

 

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Sensory Overload at the corner supermarket

I think I had one of those aha moments at the market yesterday.  I looked up the definition of an “aha moment” and apparently it is where the solution to the problem suddenly become clear.

Problem:  Taking my son to the store usually results in him becoming the child from you-know-where, for what seems like no reason, other than to embarrass me, and cause me to feel I need to find another place to shop.

Aha Moment:  Don’t take him to the store anymore, unless people in the house are in danger of starvation or we have run out of coffee.  And in either one of those cases I can still hit a drive thru if necessary.

I actually had a second aha moment in the cereal/ice cream isle. (yes, cereal was on one side and the start of the frozen foods section was on the other)  Anyway, things are going downhill fast, and I am just trying to find the Grape Nuts for my son who is leaving for college in a few hours.  Then, it happened.  Jaden told me what was wrong.  It may have been something that is always wrong at the market, but his language skills have recently taken off and he was able to tell me.

“Too Loud!” he said to me, with a look of panic in his eyes, while covering both of his ears.  He said it three or four times.  I asked him what was too loud, because at the moment no one was speaking on the loud speaker, so to me things were not loud.  Jaden pointed to the freezer and again said, “too loud”.

You, know, after he mentioned it, I had to admit, the freezers were loud.  There was a hum to them that really was annoying if you payed attention.  We just usually don’t, and are capable of tuning out the overload.  Children with Sensory Processing Disorder may not be able to shut out the noise so they really do get Sensory Overload at the store, and this in turn probably leads to the horrible behavior they exhibit as they try and shut it out.

I quickly found the Grape Nuts after my fifth look at the shelves and made it to the check stand carrying a wildly obnoxious albeit adorable 3 year old sideways on my hip while pushing the cart.  The assistant manager actually jumped in and started putting my groceries on the belt.  At first I thought, how sweet, but then I realized he may have been alerted we were coming and instructed to get me out as soon as possible.  :-)

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Melatonin for Children

Melatonin use in children with sleep problems, especially children on the Autism spectrum, is fairly common it seems.  With this in mind, it is a wonder someone hasn’t come up with a better way to give it to them.  There are liquid, chewable, sub-lingual, and regular tablets.  With all these choices, it may still be a fight at bedtime.

My son does not like to take medicine, even if it is supposed to taste good.  He was on many medications and supplements from infancy for a variety of reasons, and he learned how to refuse and put up a fight.  You think it is in there, and bang, he pushes out the tongue and it is down the neck, turning another shirt collar pink!

Melatonin has been a trial that I have lived through and come out victorious.  He was first prescribed a liquid melatonin.  It is convenient, easy to give smaller doses, and covered by Medical.  Problem is, it tastes horrible, like liquid vitamins.  I tried mixing it in juice or food, and it only turns the whole thing bad.

Sublingual tablets are supposed to melt under the tongue.  Not an option for a toddler, and chewing is not recommended, so I tried crushing and adding it to milk.  Weird, but it crushes into a nice powder, but when added to milk clumps together again.    And it is then too big to get through the holes on the sippy cup!

Regular pills sometimes don’t crush well, and were hard to find in low doses.

You may be thinking, hey, why don’t you just go with chewable??  Well, it is hard to find chewable Melatonin.  I guess it is still marketed mostly to adults with sleep problems and jet lag, and adults are capable of swallowing a tablet or two.

But, I did find two chewable options recently.  Do you have a Trader Joe’s near you?  They have a chewable tablet that taste like peppermint.  It is only 500 mcg, which is .5 mg.  A very low dose.  I tried one, and it didn’t work, so now my son takes two.  And the price is nice.  Only about $5.00 for a bottle of 100.  There is also a chewable, marketed for kids, that I found on Facebook.  I tried it, it works, but is too pricey.

We have tried sustained release, but I really saw no difference.  I also had to crush these and add to milk, and my son rarely drinks much milk or anything before bed, so it was a pain.  And he still wakes up after 3-4 hours.

So the easiest and cheapest Melatonin was from good old Trader Joe’s.   The strong peppermint flavor is also perfect for my sensory seeking child who loves strong flavors. :-)

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Melatonin for Children With Sleep Disorders

Melatonin was the first thing suggested to me by two of Jaden’s doctors, both the neurologist and his ophthalmologist (okay, it has taken me three searches to find the correct spelling for “eye doctor” and it still doesn’t seem right!)

The neurologist said that many children on the Autism Spectrum have sleep disorders and possibly lower melatonin levels.  She said she wasn’t sure if it would work, but it was worth a try. The eye doctor agreed that Melatonin was warranted for Jaden because visually impaired babies and children also had problems sleeping though the night because they do not see the day/night light differences needed to regulate out body clock or circadian rhythm, which is regulated by daylight.

They said to try .25 mg and work up to 1 mg over a month’s time.  We have tried up to 3 mg at this point, and since I do not see any significant difference at the higher dose, I am back down to .5 mg.  Though Melatonin is a natural substance, there are not enough long term studies on its synthetic use in children to know that there won’t be problems.

Melatonin is supposed to help you fall asleep and stay asleep.  It does help my son to fall asleep quicker, but it doesn’t seem to have much affect on him sleep through the night.  He sleeps best when being held firmly and sucking on a pacifier and holding a replacement in one hand. . .

I will give details on the types of Melatonin we have  tried and my sneaky methods of getting it down his throat in the next post.

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Sleep, and our adventures trying to get it

My son has trouble falling asleep and then will wake up several time during the night.  I really have tried everything, so please don’t judge too harshly.  Maybe a better bedtime routine from infancy would have helped, but it was difficult to say the least.  I did not get Jaden until he was five months of age.  I personally was not emotionally capable of leaving him to cry it out, not knowing what kind of trauma he was suffering from at the time.  Holding him while he fell asleep and running to him when he cried was necessary for bonding.

Jaden is also vision impaired, having a diagnosis of Nystagmus and Optic Atrophy.  The Optic Atrophy is linked to maternal drug use and his opthamologist feels like this was the most likely cause.  Nystagmus, the eyes shooting back and forth quickly and often called “dancing eyes”, kicked in as Jaden tried to focus and couldn’t.  Having a vision impairment is thought to mess with the circadian rhythm and and body clock, since our eyes use cues of day and night to help regulate our sleep cycles.

He also suffered from asthma and allergies from about 15 months of age, and I do not let babies “cry it out” when they have trouble breathing!

Cerebral Palsy, mild as it is, meant Jaden didn’t walk until 22 months.  But he flung his body out of his crib and didn’t care where he landed. His pain tolerance was extremely high.

So you can see my dilemma:  I have a baby I am trying to bond with, who is extremely delayed, and visually impaired, somewhat sick, and also has no fear.  Couple this with the fact that he just didn’t seem to need sleep or want it.  I used to get him to sleep, put him in a crib, and then barricade the door with 2 gates.  When those didn’t work I put 2 gates, a bucket of toys, and a ride along musical train in front of the door.  All in an effort to create a noisy departure that I would hear.

Then one night he somehow escaped anyway.  He could barely walk, very left-sided and dragging his leg, plus visually impaired, and fearless.

I heard a noise, and upon investigation I find Jaden in the kitchen playing, thankfully on the ground!  Yes, I couldn’t breathe for fear of what could have happened.  This wasn’t even his scariest escape.  Once, when he didn’t even walk yet, I heard a noise and he had jumped out of the crib (his first time, and I didn’t even know it was possible), crawled down the hall, put the bathroom stool in the tub, and was in the dry tub playing with toys.

That started the use of gates and barricades.

Then we had the problem of stripping in the middle of the night and removing the diaper. That will be another post. . .  fun times.

Sometimes it took over an hour to get him to sleep and he woke up almost every hour.  He also uses pacifiers.  I know, I know, they can be a problem, They fall out and then he needs it put back in.  But we need to use the pacifiers because he grinds his teeth.

This problem with sleep was actually when his Regional Center worker first mentioned the possibility of a sensory disorder.  She explained sensory seeking behaviors and I was floored to hear that there could be another reason Jaden didn’t sleep well.

Another 2 or 3 letter diagnosis to add to our list.

Wow, I just noticed the length of this post!  Lack of sleep makes it hard to organize my thoughts coherently!

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Sleep and Autism and Sensory Seekers

I miss sleep.  I mean sleeping through he night that is.  I don’t like to go to sleep, as I feel I am missing out on something while I’m there.  You know, books to be read, laundry to do, Scrabble to play, movies to watch. . .  So I resist going to sleep for the night, but once there I don’t like to be woken up every hour or two.

My son has sleep problems to the degree of being called a sleep disorder.  I am talking waking up 3-6 times a night.  I am tired all the time.  He is not.  For about 3 years I have been searching for answers and a solution.

Possible reasons his doctors have mentioned:

  • Sensory Processing Disorder (sensory seeker needing input throughout the night)
  • visually impaired -  Nystagmus and Optic Atrophy (messes up the sleep cycle and Melatonin levels)
  • white matter hypoplasia – Brain damage
  • Cerebral Palsy – multiple reasons
  • Autism – (common in ASD for many reasons)
  • bad parenting (no bedtime routine, etc)

We have tried Melatonin, stopping and starting medications he was already on, no naps, wearing him out, and lastly, just giving in and holding him til he falls back asleep.

Now I need some help because he will wake up and wander the house if he had the chance.  I have been looking into weighted blankets and safety beds too.

I will share my research and experiences in further posts.

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