Thursday, October 30, 2014

Just when you think things are OK

C-note is in Cub scouts.  It's his first year and he loves it.  He's a Tiger cub, where it all begins.

October is the month that most scouts are in Health and Safety.  We love the Go See It sections so we organized it this time.  For our safety section, we had to go to a Fire or Police department.  We chose the Fire Station.  C-note has been to one before and enjoyed the experience.  This time, not so much.

I'm thankful that I was able to devote my time to C-note as his younger 2 siblings were home with my hubby, Jeremy.  C-note was a clinging vine the whole time.  I had to urge him forward just to stay with the group.  Usually, when there's something new to learn, he will be in the front of the group and asking all sorts of questions.  I encouraged him to join his friends, but when he would reach the edge of the group he would come right back to me and wrap my arms around him.

I learned long ago, that you never try to push a child into something they're uncomfortable with.  That was often done to me as a child and I still resent those times.  It never made me like it, it did the exact opposite.  So that is one thing I will never do to my children and will not allow to have done to my children.

At one point of our tour, they had a Rookie gear up completely.  While all of the kids found it fascinating, C-note was terrified.  He hid.  We stayed in the back and I let him hide.  Another fireman was close by and let C-note take the time to go to the restroom.  On the way back I asked the man to talk with C-note and ease his fear.  He understands mentally that they are there to help, but he can't control the fear of seeing them.  At the end, because he knew what they looked like when they were in their gear, he wouldn't go near them or look at them.  When asked what makes him afraid, he said it's the color of their uniform.  I think it was more that you can't see any of their skin.  But he tried to explain, which he could once upon a time.

It could have been that he was having an "off" day and was more sensitive to the unusual; or it could be that he maintains his fear of firemen and women in complete gear.  I hope not, because if he ever needs their help, I don't want him to run from them.  But, the last time I saw him so afraid was when he about clawed my husbands face off to get away from a man dressed up as Scooby Doo when he was 3yrs old.  We thought that he had gotten past this sort of thing, but apparently it still bothers him.  I don't care if he ever wants to shake hands or be hugged by a random person in a costume.  But I would like him to be able to appreciate the risks that these brave men and women take to keep us safe.  And maybe someday, he'll be able to shake the hand of one of them and tell them "thank you"

The boy who couldn't Pretend.

C-note is a curious boy.  I often tell him that he's really Sid the Science kid, because he wants to know everything about everything.  But of course he's rooted in reality and he laughs and asks if I can't even recognize my own kid, because he's obviously not anything but himself.

C-note is 7yrs old.  C-note has a very hard time pretending about anything.  Inoticed at a very young age that every time I would pretend to build a house with blocks or any pretend play with toys, C-note would become extremely upset.  He would knock down blocks, start to cry or even try to cover my mouth.  I believed that I simply hadn't found the correct thing to interest him yet.  After all, every child likes to pretend.  I'd worked in Church children's ministry's since my early teens. I "knew" what to expect.

When he was between 1 and 2 yrs old the aversion to pretend play because very apparent.  He LOVED to watch Go Diego Go.  I thought this would be a wonderful thing.  We would pretend to go on adventures and pretend to talk to the animals and rescue them.  So I told C-note the game we would play and I began to pretend that he was Diego and I was baby Jaguar.  Only C-note didn't start playing with me.  He threw himself on the floor in complete despair.  He kept crying his name over and over and saying he was NOT Diego.

Stunned, I sat down and held him close.  I tried to explain that I knew he wasn't Diego.  It took a long time to calm him down.   That moment drove home for me that my little boy was different.  Up to that point I kept buying different toys, hoping that something about it would catch his interest, but always falling flat.  I would do pretend play myself, hoping that he would join in, to no avail.

To say I was disappointed would be an understatement.  I suffered 2 miscarriages and was told that I wouldn't be able to have any children at all.  He was a miracle.  But he didn't meet my expectations.  Off and on throughout the years, I still have tried to engage him in pretend play.  I know how important it is for development.

It wasn't until he started Kindergarten at 6 yrs old that he began to pretend.  He had been in preschool before that, but he didn't care.  Something finally clicked in his brain.  You can't imagine how happy I was.  He not only started to pretend, but he started to race around with the other boys in his class.

He is still firmly rooted in reality.  He would still rather read a book on facts than a story book.  But he is now trying to understand what other kids find so amazing about pretending.    I had to let go of my dreams of what my child would be, and accept the child I was given.  He is awkward with pretending, but it's ok.  He is an amazing boy with an amazing brain.

I'm glad I didn't get the child of my dreams.  I got something so much better.  I got my C-note.  He makes my heart sing.

Monday, October 27, 2014

Isolation as a Mom

Being a mom can be a very isolating experience.  All moms are busy whether they work or not.  Moms who work go to their job every day and as soon as they get off they have to care for their family.  Moms who stay home deal with family issues all day long, take care of the house and are constantly on the go as well.  I don't think that we really mean to isolate ourselves; it just happens.

When you're a mom of a child who is 'different', in my experience, you isolate yourself even more.  It has nothing to do with being embarrassed or ashamed of your child.  It can be because you can be unsure how your child will react in a situation, or they can not tolerate a certain thing for long.  For me those were issues, as well as the sheer effort it takes to get out of the house.

To get out of the house, we have to start preparing at least an hour before.  C-note has gotten to the point where he can dress himself, but at times pant snaps are tricky.  Today, they were on completely backwards and he refused to fix it.

Bumblebee has to have clothes ready for him and reminded to put each article on.  He's always allowed to try himself, but we always have to turn around some garment.  Underwear is always backwards.  But at least he's getting real clothes on, there is a battle every time we leave the house because he doesn't want to get out of the Bumblebee transformer costume.  For him, shoes are always a 20 minute ordeal, I've timed it and so I know how to prepare for an outing.  And they aren't going to stay on very long even after we leave the house.

Lil' Bit is the easiest even though she is a prima donna.  She knows what she wants to wear all the way down to her socks and shoes.  Yes, she's 2.5 yrs old but she knows her own mind.  I choose my battles, though if I say she's going to wear the dress to church not pants, then she will listen...eventually.

These things can really wear a person out.  I'm exhausted all of the time and my nerves are constantly frayed.  Playdates don't happen.  Most people, unless they also have a child that also have neurological issues don't understand.  They will stop asking you over, I don't think it's on purpose, but since they don't understand your child.  People avoid things they can't understand.  Other people who have kids that are special like yours find it just as difficult to leave the house and would rather you visit them.

My boys need controlled environments, which isn't always possible.  We frequently stay home for my sanity.  Yet, I find myself depressed because I don't have any friends that I can call and hang out with.  My children didn't create this isolation though.  I did.

Things get a little easier every 6 months or so and maybe I will find another mom who is willing to accept that we are a different kind of family.  My kids are with me 24/7 because it helps them thrive is a world that's overwhelming to them.  I don't want to hear how 'not normal' my boys are; I already know.

Thursday, October 23, 2014

Chewable Necklace Review

C-note likes to chew and put things in his mouth.  He has been known to lick door handles, chew remote controls and stair railings, just to name a few.  For infants and toddlers this behavior is expected and accepted; but it's not acceptable for a 7yr old boy.  So, what could I do?

I started reading up on the issue and found that there are things called Chew Tubes.  They looked great.  The problem was that he would have to carry them around and he would forget where he put it.  My thought was that he would need something that would hang on his neck.  I entered the search of "chewable necklace" on and came up with 485 results.  There are so many options.  Unfortunately, most of them look too "girlie" for C-note.

We started out with this one:  Star Chewable Necklace

I was great.  C-note loved it and would ask for it, until one day a child a kindergarten made a negative comment.  I don't know what was said, he was unable to verbalize the interaction.  But, that was it, and he never wanted to wear it again.  We did have him wear it at home, which he didn't like, so ended up giving it to the puppy.  FYI, a puppy can destroy this necklace in less than 5 minutes.

The chewing didn't improve, so, this time I let him pick out his own.  This was his choice:  Organic Phoenix Chewable Necklace.

There are times that I have to remind him to put it on, but this practically lives in his mouth.  After 2 months of use, it still looks new.  The nylon cord is very long, but can be shortened to whatever size is needed.  It would be nice if the breakaway clasp were more sturdy, but, for the price, it can't be beat.  Since it is a ring, it is easy to bend and flex.  This has caused me concern at times because C-note chews this in all directions, but there are no cracks.

This necklace has been great for my moderate chewer and I recently ordered an identical backup.   C-note's Occupational Therapist also loves this product and is also recommending these to her other patients.

Cryptic Symptoms

Lil' bit has had a lot of bladder problems this year.  Every time, it looked like another UTI had surfaced and I would flush her system with cranberry juice and a ton of fluids in general. She also has extremely sensitive skin so I also leave off anything touching her skin 'down there' as much as possible.

She recently got another infection.  This time, nothing was working.  So, off to the doctor we went.  Antibiotics were ordered, but they didn't work.  Thankfully, I have a pediatrician who doesn't believe that a prescription is the only answer and ordered allergy testing.    The testing showed that she very allergic to whey protein.   She also has allergies to casein (another milk protein), eggs and wheat.

These allergies cause her bladder to spasm after they are digested and mimics a urinary tract infection.  Lil' Bit has now been off of all milk proteins for a week now.  She hasn't had any more potty accidents and she's woken up dry 2 nights this last week, but is still complaining that her bottom hurts.

Our next step is to eliminate wheat.  It's amazing how much she has improved, and while it may be difficult to cut out wheat, I know that it will all be worth it.

Friday, October 10, 2014

When to Say No

Today's society says that your child needs to be involved in as many things as possible to succeed in life.  I live in the 4th largest city in the US, Houston, and this is more apparent here than many other places in the South.  It's a constant competition to say that "my child can do this" or "my child is involved in that".

Having a child with Asperger's, or High Functioning Autism, make this competition extremely difficult.  Group activities, like sports, leave these children in sensory overload and feeling defeated.  Understand, that the feelings of defeat don't come from a lack of trying.  Most children with Asperger's also have trouble with spacial orientation, and simply don't perform at sports as many of their peers.  There are always exceptions, but this has certainly held true with my Aspergers son.

Birthday parties are also a challenge.  Sensory overload abounds.  There are noisy children, having fun all around them.  There's competitive games, that they don't have muscle coordination to play well.  And sugar, lots and lots of sugar.  This means that parties can be a recipe for disaster.

Group lessons can also be difficult.  When class sizes get too large, an Asperger's child can go into meltdown, or begin to exhibit ADHD like behavior.  When there is so much activity around them, they don't know where to look and what to do with their body.

There are many activities that can send your child into overload and it's important to understand which one will be too much for them.  Pushing a child into a situation that's uncomfortable for them will only lead to disaster.  Even the best behaved Asperger's child will eventually act out.  This behavior is not intentional, simply a way for them to release their feelings.

Learning when to say no is something that I'm learning.  When I'm asked to attend something with my child, or we're considering a new activity, there are a few questions that I always ask myself:

1 - Will the venue be crowded?
2 - Can I remove my child/children quickly if it becomes too much?
3 - Will it be noisy?
4 - Will my child be forced into physical contact with others
5 - Do the chances of success outweigh the risk of meltdown?
6 - How busy have we been the rest of the week?

We rarely go to birthday parties, they are usually too much stimulation for C-note.  Sports also leave him feeling less than what he really is.  We have found a local swim team that he can compete, but he is only trying to beat himself and no other person.  We are trying to get down to 1 activity a day, with at least 1 day a week that nothing is scheduled.  If we want to see friends, we invite them to our house, it's comforting to my son.  Yes, they need a change of scenery at times, but too often, and it just causes stress.

It's ok to say no to extra activities.  It's ok not to go to someone's BBQ.  Saying no doesn't make you a bad parent, it makes you a sensitive parent.  Not going out doesn't make you anti-social, or overprotective;  It means that you care about your child's feelings more than another persons.

If those who invited you are true friends, they will understand, that sometimes, it's better to meet at your house if they want to see you.  There will be times that you can't avoid an overloading situation, but simply prepare as best as you can.  For my C-note, we have a tablet, with games set at his level, that he can retreat into it and block out everything around him.

Monday, October 6, 2014

No cupcakes for you!

C-note has High Functioning Autism.  So, he tends to be a little more random than most children.  I usually have some idea where his thoughts come from, but there are times that the randomness confuses even me.

Today, we had one of those confusing times.  We had just left the house to run errands when C-note announces that after all of my kids are married that I won't have to make cupcakes anymore.  Sonce I don't make cupcakes, I was sincerely confused.  Upon further questioning, it was determined that I wouldn't have anyone in the house to make birthday cupcakes for.  Let me reiterate, I DO NOT make cupcakes!  I have learned that any cakes or cupcakes that I attempt are the worst cake wrecks you have ever seen.  I asked if he would ever visit me, we could have cupcakes then.  He agreed and said his future wife would probably like it if I would make cupcakes for their baby so they could go out on a date.  HE'S SEVEN YEARS OLD!!  I keep telling him that he has many years to worry about getting a wife and having babies, but he is determined to grow up.

Thursday, October 2, 2014

The day Bumblebee decided to play Superman

My house is a disaster right now.  Three days ago I split my boys rooms and let the oldest have the guest room.  This didn't go slowly, like I had planned in my head.  I started to clean out the guest room and was instantly asked what I was doing by C-note.  He has to know everything about everything and any change in his world must be labeled and assimilated.  I had to tell him; that of course accelerated my plans because it was now something that he wanted done months ago.  So, all of the stuff (junk) that was in the guest room, including decor, is now piled up in my room awaiting sorting and ejection from the house.

To add to my madness I decided that I couldn't stand the layout of my living room any longer.  (Oh, at times I get something in my head that I can't move past.  It will drive me crazy until something is done about it.  Hey, my boys had to get it from somewhere.)  When I redecorate, I simply start moving things until they make me happy.

I was in the middle of living room chaos when lunch time hit.  In my house that means all activity must cease and desist until little mouths are fed.  So off I went.  I finally able to sit down to eat after the boys had finished and ran off to play.  The favorite location is C-notes new room, it was off limits before, so it is currently the most amazing room EVER.

There is a very tall bookshelf in that room and Bumblebee insists on climbing everything right now.  Today, the bookshelf was the target.  Bumblebee made it up and took a flying leap off the top of the bookshelf.  This, unfortunately, unbalanced the bookshelf and made the whole thing topple...right on top of C-note, who was reading a book on the floor.

So, here I was happily eating my lunch and chatting with Lil' Bit, when I here this crash that sounded like the floor was caving in, followed a split second later by earsplitting screams.  When I reached the room, I saw C-note trying to get himself out from under the shelf as Bumblebee looked on in horror.

The large gap is where I pulled out one of the shelves.  As I lifted C-note out of the shelf, I saw several small cuts from the top of his eyebrows to the tip of his nose.  Long ago I worked for an ENT who would get so mad at parents when they didn't bring their child in immediately for a facial injury.  This is because a nose must be set the same day as the injury, or the nose has to be rebroken, it heals that fast.  So he was going to the

Bless my neighbor, I saw her coming home and I completely hijacked her.  I told her briefly what happened and asked if she would keep the two littles for me; the angel agreed and off we went.  

C-note was calm by the time we got to the ER and ended up having the greatest time ever.  They had him get into superhero poses so they could take xrays. They told him how brave he was and made jokes with him.  They made his day by explaining the xrays to him.  He was given the remote for the tv in his room which only had kids channels and he had mom all to himself.

After a couple of hours we were assured that there were no internal injuries and no broken bones.  C-note was given a lollipop and a sticker and I was given a bill. 

My husband did come home while I was still at the ER to take care of the littles.  Bumblebee has hopefully learned a lesson about climbing furniture (though I doubt it).  I got to witness C-note's fascination on learning about xrays and ct scans. And hopefully, the next time my neighbor comes over, my house won't be in such a state of transition.

Wednesday, October 1, 2014

Paint Brush Pens -Review

A while ago I found these amazing things: Crayola Washable Paint Pens.  C-Note hates to color so painting is not going to happen without wailing and gnashing of teeth.  These little babies could be the answer to prayers!  

I ended up losing the things for a very long time.  So long in fact that I forgot I bought them and when I found them at the store again, I marveled at what a wonderful invention they were and promptly bought another pack.  After bringing them home they again went into a drawer for later use.  Are you beginning to see a pattern here?  

A couple of days ago my husband finally agreed that we could in fact split the boys rooms and let C-note take over the guest room.  I use the term 'guest room' very loosely.  It has a bed and a whole lot of junk that I've accumulated for crafts, that have never been completed.  I start out with the best of intentions, but it is a ton of work to follow through with all of my ideas.

Yesterday, I decided that I had better start The Purge if I was ever going to get them separated and bed times more relaxed.  I found all sorts of amazing treasures in that room!  I have forgotten what most of these fun things were bought for in the past, but who cares, they're getting a new purpose now.

Among my treasures I rediscovered the paint pens and some small canvas things.  Well, the guest room was partially decorated, but not in a style that a 7yr old boy would appreciate.  I found the great idea of using silhouettes for kids art and since I had all of the supplies, I went to work.

I made stencils from ordinary printer paper and internet images.  The tips of the pens are shaped like a paint brush, but that's about were the similarity ends.  The tips are marker type material and in fact they 'paint' like markers too.  They do blend like paint would and they are easy to use.  The paint did not bleed through the printer paper as one would expect. 

Here's a sample of my work:

These babies aren't made for permanent art though.  They are washable and will wash off canvas if they get wet.   All my little ones used them on drawing paper and it was the longest painting session we've ever had.  They were all happy with their work and for me, that made the pens worth the expense.

Really are no drip
no visible brush strokes
No mess
Easy cleanup
Blends like real paint
No bleeding, paint stays where you put it
Never triggered sensory avoidance

Not for permanent art
Blending on the paper also blends the color of your pen tip
Feels like a marker
a little pricey

Best Use:
Kids art on paper, no canvas or anything you want to keep long term.

Taking a Step Back

Bumblebee is a very slow learner.  He does eventually figure things out, but it takes a lot of time.  He also has no concept of personal space or belongings.  An issue that has been going on for a long time is with food.

Bumblebee looks frail.  He's very bony and petite.  He eats like a horse but is always hungry and simply does not gain weight.  There isn't anything wrong with him though, this is a family trait and yes, we have verified with testing.

Lil' Bit also likes to eat but she is a lot slower.  Bumblebee will finish his meal and then go over to Lil' Bit and start to take food off her plate.  This is after he has finished a plate that would put me in a food coma.  Lil' Bit is justifiably upset and whacks him on the arm.  Once upon a time, I would have corrected this.

After months of this and the same behavior being repeated daily, I am stepping back.  I have been punishing one for defending her own food and the other simply doesn't care what you punish him with.  What does that teach them?

I am now allowing Lil' Bit to exercise her right to defend not only her food, but whatever she is currently playing with as well.  Bumblebee is learning that simply because you want something, does not give you the right to take it; and if you try, there are consequences.  I prefer that they learn these lessons in a controlled environment than where they could seriously get hurt.

Bumblebee has taken things from others in public and has been bruised and knocked down for this.  The other child uses excessive force and Bumblebee doesn't understand and he never fights back.  This causes him pain mentally and physically.  The mental pain is from his feelings of being wronged.

I don't like to see this behavior in any of my children, but looking at the long term, my daughter needs to know that she can defend her rights, and my son needs to learn that you can't simply take what you want.  The world is a hard place, but it's my responsibility to ensure that they can turn into happy and productive adults.