Master Manipulator

J has got it down to a science.  Pretty much every day he balks at getting on the bus.  He doesn’t cry, he just puts on stubborn feet and tries to hide behind me.  Often times I have to pick him up and set him on the next to top step so that the bus aide can pull him up into the bus.  His teachers have assured me that he arrives at school happy and ready for the day and that there isn’t an inch of defiance/stubbornness left when he arrives (less than 10 minutes from leaving our driveway.)  Today I got to see it for myself.  As soon as the bus pulled away I realized that I shut my medicine alarm off early today and had forgotten to give him his morning doses.  Not wanting a repeat of the day after Valentines, I put Little J in the car and we raced off to meet the bus at school, hopefully catching him before they shut the gate.  He was still outside when I got there.  He was so ready to go in to the classroom he could barely register that I was there.  He did let me give him his meds but he stayed focused on his teachers and class the whole time.  He didn’t even notice when I left because he was too busy pulling his teacher into the gate.  Makes me feel much less guilty about forcing him on the bus every morning.  For those of you who haven’t been with me since the beginning, I put him on the bus because he cried when I dropped him off.  I’d much rather a little stubbornness than the weeping and trying to run away.

Speaking of weeping…. the poor guy had an awful day at the Dr’s office.  I normally would prepare him days in advance for something like this, but he is a worrier.  He remembers that the last time he went, he also got shots.  that was in July.  So I did mention briefly before school that he wouldn’t get much computer time when he got home because we would go see the Dr. and talk about his head hurting.  So he asks if the Dr. is going to hurt him and I change the subject.  I knew that there was a possibility of a blood draw so I didn’t want to lie to him.  On the way to the Dr. he insists that he is all better and doesn’t need to go.  Basically I have decided that I hate our Ped. and will probably look for another one off base, but I’ll get to that later.  Since the headaches are sort of inconsistent he ordered a head x-ray, a blood draw, and a trip to the optometrist.  So we did the x-ray 1st, it came back with a “something” so we had to take a 2nd one.  Then we went to the lab.  They fought (playfully) in front of me over whose turn it was for a Ped draw.  I assured them from the beginning that he would give them a hard time.  So we got called back after they pulled straws.  The tech puts him in my lap and puts the thing down in front of us.  I was waiting for someone else but she acted as if I could handle him myself.  She wanted me to pin his right arm under my right arm, hold him all the way against my chest, AND use my right hand to hold his upper left arm.  all the while holding the bottom of his left arm with my left hand, and not let him move.  YEAH RIGHT!  So she stuck him, he squirmed, he broke free and she almost freaked out.  She got the needle out and yelled that someone else needed to help her.  so they brought in the guy and he did the whole hug and hold technique while I comforted him by holding my hands over his ears and sympathizing with him and keeping his eyes on mine and not the needle.  WHEW we got through it.  We have a follow up in a week.  In the meantime I still need to make the appointment for the optometrist….which probably will get us nowhere since he will most likely be non-compliant.  I will hope for the best though.

Okay so back to my Pediatrician.  We are assigned Dr.s when we arrive on base.  Before this base we hadn’t had any problems with any of the ones we were assigned.  When I took the boys in July for their well checkups I addressed my concerns about him possibly having asperger’s or autism or adhd or a combination.  He went on and on about how it couldn’t be autism and that he doesn’t like that diagnosis in kids who are so verbal and have eye contact and etc. (insert your favorite stereotype of autism here)  He was pretty quick to dismiss everything but the adhd and recommended we see the psychiatrist for a diagnosis and look into the school district preschool screenings.  We did both.  We have a diagnosis of Autism.  The Psychiatrist said it could swing either autism or aspergers but since they were on the same spectrum and Arizona doesn’t recognize asperger’s as “at risk” he put down Autism so we would be eligible for more aid (which as of now is nothing.)  The Preschool evaluators do not give diagnoses just degrees of delay.  In their terms he is moderately delayed especially in the social category.

So today the Dr. walks in and asks J if “Do you have something to show me?”  J was a little confused at first but when the Dr. asked again J focused in on his magazine sitting across from him and said “yes.”  the Dr. asked, “what is it?”  J says “A magazine.”  “Well what do you want to show me?”  J says, “I’ll show you….” (as he flips pages.)  He flipped through most of it before settling on a page.  It was like the Dr. put him on the spot and J couldn’t figure out what it was that he was suppose to be doing but he was trying to comply.  Based on that conversation and the fact that J changed the pronoun in “show me” to “show you” the Ped says flat out, “that’s not Autism.”  Again he went on his diatribe of how ADHD has some of the same symptoms and that the lack of attention also can cause the social delays and on and on. and that he prefers Doctors to look at ADHD first because it is treatable and autism is not.  He was so glad that J was on medication for the ADHD and that made me mad because I know after talking to another mom that meds are his first defense for hyperactive kids  (her kid was awake for over 2 days after the dose of stimulants he gave him).  I was getting very flustered and frustrated.  I felt like he was accusing me of Munchausen by proxy, that I just exaggerate to make everyone think J has autism.  I DO NOT WISH THAT ON ANYONE.  He saw only a snapshot of J. 

 Oh and when J started repeating a phrase (delayed echolalia) “Stop that you big bully!” in response to the Dr. checking his ears, I said “He’s not  a bully, he’s your Dr.”  To this the Dr. replied to J, “Do kids make fun of you at school?” and J said “yes.”  He then looks at me pointedly and says thats typical for adhd kids to get made fun of and bullied.  (there is no bullying in J’s special classroom)  I told him that I didn’t think that J understood him or knew what that meant.  so he asked how he would know to call him a bully.  “FROM TV”.  After trying to pry into the situation it turns out that J thinks being made fun of is when the teacher tells you to shut the door and not open it when trying to run away from class.  (Apparently he didn’t want snack today and instead tried to leave class.)  So then based on this misunderstanding the Dr. wanted to know if J even knew what a headache was.  I told him that he doesn’t use that word just that his “head hurts.”  I gave him the whole story again and how they are waking him in the night with the pain.  He kept trying to lead me, that maybe J has heard me say my heard hurt and that it garners some kind of sympathy. 

So now not only am I lying about J having Autism but J is lying about having “head hurts”

UUUUGGGGHHHH!  now my head hurts!

Thanks if you stayed with me this long.

Advertisements

A little something for you

I had this email forwarded to me.  Who doesn’t like something free? and musical to boot.  not to mention educational.

For children with special needs:

The Come Children Sing Institute is offering free gift certificates for Come Children, Sing! Online Music Classes for infants, babies and toddlers with special needs.  The $35 gift certificate will provide one 10-week Online Music Class.  Request a free gift certificate for your child by sending an email to
mepinzino@comechildrensing.com.  Mention this message and that
you have a child with special needs. Your gift certificate will
be sent via email and you can start the Online Music Class at
any time.

Come Children, Sing! is a developmental music program that
makes learning music as natural as learning language.  You can
now engage with your little one in music classes online, in
your own home and on your own schedule, whatever your musical
background, and whatever the developmental level of your
child.  MP3 files, music activities, and parent tips are all
provided online, and you can make Come Children, Sing! portable
with an iPod or CD.

For further information and to view free sample lessons of Come
Children, Sing! Online Music Classes for infants, babies and
toddlers, go to www.comechildrensing.com.

Mary Ellen Pinzino, Director
Come Children Sing Institute
P.O. Box 1202
Homewood, IL 60430
Tel: 708/957-SING!
Fax: 708/957-7464

www.comechildrensing.com

Taking a Leap

Today I started my new playgroup for parents of special needs kids.  I don’t have any members yet, but I will.  I use a platform called meetup.com and they send out announcements of new groups 72 hours after they have started.  I am grateful for the experience I have gotten this past year organizing a group of military moms.  I plan to continue with this group but I wanted to add something more specific in our lives for J.  I currently plan most of my schedule around when he will be in school.

I am a shy person by nature but I can be very out going in situations I can control.  So even though I said I would join one of the local support groups before forming my playgroup, I am just to chicken to do so.  Maybe once I meet people through my message board, then in person, we can go to a support group meeting together.  Honestly I need a support group for attending support groups but I probably wouldn’t go to that either. :{

Really if I can just find one or two other moms who I can relate to and who have kids that get along with mine (that’s been a problem lately) I’ll count it as a success.  I am not out there to form a mega group but will do whatever I can to help it grow at a healthy rate.  I’ll keep you updated.

If you are looking for a playgroup in your area check out Meetup.com and search by zip code.  when I was getting up the courage to start my group I looked around and there are lots of meetups in the states.  Most are called “Parents of special needs kids in *your city name here*”  I asked some friends for ideas to give mine an original name and they came up with “M.O.M.S.  = Moms of Many Spectrums”.  I like it. 🙂

 

momsofmanyspectrums.gif

Taking a vacation

Here in Tucson, the schools skip President’s day Holiday in favor of Wed-Fri off for the Rodeo.  Since going to the Rodeo would prove far too challenging for J (sights, smells, unfamiliarity) we will be going to grandma and grandpa’s house instead.  My parents only live about 85 miles north of us.  They have a great house where we are always welcome.  There is a lot more room there inside and out so the kids get a chance to spread out from each other and me.  There are also extra adult hands to help get snacks, eyes to help read books, and arms for lots of hugging and snuggling.  The boys are usually on some of their best behavior when we go there and it is a nice retreat.

This time around I will be hosting some moms in my parent’s loft for a movie night.  I’ll let you know how it goes, but no matter what, Girl time is always great.

On another note with no segue what so ever….

J has been suffering from random unexplained headaches.  I guess technically it started about 1.5 weeks ago when he had a 24 hour stomach bug.  So I thought they were connected.  However, since early Monday morning he has had several more with no other symptoms.  they come on suddenly and are pretty severe.  So severe that they are waking him up.  He goes from feeling fine one minute to crying.  We left the house today to go to a movie with friends.  Veggie Tales was playing at a theater that has $1 movies on Tuesdays.  I figured if we had to leave suddenly it wouldn’t be a big loss.  I checked with him all day before and after school to see how he was feeling and every-time he said “fine.”  We were about 3 minutes from home when he said his head hurt.  By the time we got into the store on the way to the movie he looked ill and by the time we checked out he had his face buried in my back and was crying.  The poor cashier said her heart was breaking.  I gave him some pain reliever in the car and when we got into the movie he was already starting to feel better.  Although he was feeling better, he still decided to leave before the movie was over.  I think he only wanted to leave because he was bored and not because it was too loud.  He never once covered his ears, but he also didn’t seem to be picking up on the humor.  We had Little J with us, so once J started asking to leave so did he.  We made it through a whole hour though.  At the super cheap prices and uncrowded atmosphere we will go back once or twice a month on Tuesdays.  As for the headaches, I got J an appointment with his primary care on Monday.  Until then I think I will keep a log of when and how many headaches he has.

Justified Choices

Not a day goes by when I don’t wonder if medicating my child is the right way to go.  He has been diagnosed with Autism, ADHD, Severe Separation Anxiety, and Sensory issues.  He is taking medications for ADHD and Anxiety.  The very first set of meds he was on in October did nothing, but he was far worse when he was off of them.  This set of meds, doses since beginning of December, have made some huge differences.  His teachers comment all the time on how much progress he has made and how much they enjoy having him in class.  People at church stop me and tell me they are noticing a change in him.  Still, Some days are hard and make me question if it is the meds or the training creating the difference.  But days like this past Friday remind me that it is the right choice for our family.

Some how I forgot to give him his meds in the morning.  When I went to pick him up from school a few kids came out before him and the teachers mentioned to the other parents that it had been a hard day for all the kids in the class.  Then J came out.  His lead teacher told me that it had been a rough day.  He constantly needed to be redirected, he had a few meltdowns, and he really couldn’t focus.  His teachers were chalking it up to post-Valentines sugar rushes.  It was at that point that I remembered he hadn’t had his meds.  We really needed to go to the store for pull-ups and diapers, but Little J fell asleep in the car.  So I dropped Little J off at home in his bed, hubby is on Mids so he was home, and J and I headed off to the store.  While we were there he continually asked for a toy, normal for a 4 year old but he took it to another level.  He started lashing out trying to hit me.  so I put him in the cart and he kept climbing out while we were moving.  He repeated the word “toy” like an angry mantra.  then while we were looking at grownup books (I needed to pick one for book club) he saw the fruit cups and changed from “toy” to “fruit.”  Now I may have bought the fruit if it wasn’t for the anger and hitting and the fact that we had some at home.  I decided we were done.  Unfortunately I couldn’t leave without the stuff in the cart so we went to check out.  He continued to lash out and almost fell out of the cart.  the cashier was trying not to stare, but did tell him if he didn’t sit down he would fall out.  I was trying my best to keep out of arm’s length and ignore his “fruit” diatribe because engaging him when he is stuck on a loop does more harm than good.  When we got to the car and I buckled him in he was still very angry.  By the time I started the car and looked in the mirror, silent tears were falling on his cheeks.  I felt horrible because I knew it was partly my fault.  I should have given him his meds and I should have fed him before taking him to the store (he is extra cranky when his blood sugar is low.)  I debated giving him meds when we got home but I felt like it was too late, plus he needed a nap and he can’t take ADHD meds before sleeping.  When he woke up he was still in a super bad mood, unfocused, and just not himself.  Luckily in the cabinet I have the old dosage which is 1/2 of the current one so I gave him his meds.  Within 40 minutes he was J again.  It kicked in sometime during dinner.

So after that day, I realized our choices are truly justified.  One day like that in 2.5 months is one day too many.  If he wasn’t on meds, I would need to be.  My nerves were completely frazzled and I’m sure I owe his teachers an apology, they are saints.

The other benefit of sun

Yesterday I talked about how great I felt after getting to talk with my friends as our kids played happily together.

What I realized at 10pm last night: The kids went to bed the FIRST time I layed them down instead of staying up with all kinds of antics for an extra hour.  and this was AFTER they had each taken a great nap as well.

Long afternoons playing outside, running, with friends equals sleep!

Well at least for them.  Me, I’ve had a touch of insomnia lately.

Thanks Ya’ll

Apparently guilt brings you all out of the woodwork 😉

I really do appreciate all the encouragement and suggestions.  Comment love + double stuff oreos + sunshine + friends does a girl some good.

On a happy note, today we went to the park today for a little Valentine party with our play group.  It turned out to be 3 moms and 6 boys.  5 of them were between 2 and almost 5.  We let hem decorate “mail boxes” and then deliver valentines to each other.  There was cupcakes and juice.  but best of all there was lots of running around, tree climbing, rock climbing, sliding and laughter.  Here in AZ the sun was shining and it was around 75 degrees.

The boys played amazingly well together.  At one point there was a cute pretend game of pirates going on.  It started when J decided the tree branch he was standing on was a ship.  Then they started singing “What do you do with a scurvy Pirate” from Backyardigans.  From there they started in with the song “treasure, treasure where’s my treasure.”  Yeah it was kind of like a little nick jr musical in the desert trees (which are more like tall bushes.)  Next thing we know the kids are taking turns swiping “treasure” from eachother’s hands.  Turns out it was imaginary.  So at any given point in the game multiple kids were calling out “I’ve got it, you can’t catch me.”  And the race was on.  At the end when we were ready to go, J was chasing down another 4 year old to get his treasure and I could see that N was starting to get aggravated.  I yelled out “Swiper no swiping, Swiper no swiping, Swiper no swiping” (from Dora the Explorer) and J stopped dead in his tracks and did the finger snap and “Oh Man.”  N though this was the most magical thing ever and they spent the last 5 minutes with J only covering 1/2 the distance before his friend stopped him in his tracks with the Swiper words.  It gave us moms a chance to clean up with out having to break up a fight over imaginary treasure.  It was a really great afternoon. 

Most of the time when I plan playgroups, I do so while J is in school.  I try and plan one a month that he can attend.  I think there may be more in our future.  Most importantly, they played so well with each other, that us moms got to talk amongst ourselves, a rarity. 🙂

017.jpg

Some days I feel guilty

First a few house keeping notes:

You all made my stats counter go through the roof this weekend.  I was feeling so good and loved that I didn’t even play the meet n greet game to boost my numbers.

I feel bad when I don’t update for ya’ll.  I have so much in my head that when I think about typing it I get overwhelmed and give up on the whole idea.  I write this blog for me to vent and keep a record of what’s going on.  But I also write for you.  I feel like some of you have a vested interest in my life and my family.  I KNOW some of you do, because I know you personally.  However, most of the people who read I only know you through your writings. 

Currently I have been feeling guilty over treatment plans for J.  Some of you are doing absolutely everything you can to reverse the effects of autism.  You have a plan, therapies, doctors, diets, supplements, support groups, amazing blogs, etc.  I feel as though I am falling short in that department. 

Sometimes I get clouded and see my child the same way these people do.  Things aren’t so bad.  We were turned down for help from the state because he is not in danger of being institutionalized (their criteria for helping kids over 3 who can go to school.)  His school psychologist didn’t know why she was testing him last week because he was in the gifted range and she forgot about his diagnosis.  His teachers tell me all the time how thrilled they are with him and that they are certain he will be in a mainstream class next year with “resource pull-outs.”

We are suppose to be getting an evaluation for OT but with the insurance snafu I am still dealing with the therapy clinic who will see him but wants our referral.  We faxed it, waited for a call, I will call them tomorrow to check.  so I guess that is a step in the right direction.

We don’t belong to any support groups unless you count reading all your blogs and asking questions on my own when I have them.  I am considering starting a special needs “meetup” group.  I already organize one for military moms, but I noticed on the “meetups waiting to happen” site that there were several people who wanted a moms group/play group for kids with special needs.  I think the only thing holding me back is that I don’t know what I can offer that the support groups in the area don’t.  I guess I’ll have to join one to find out. 

Thanks to everyone who answered me on the Gluten Free front.  Again we aren’t on any special diets.  the only reason I am even considering this diet is because I am 70% certain that both boys have some sort of food intolerance.  They will be 5 and 3 next month and neither of them have ever had consistently “formed bowels.”  It has happened on a rare occasion but for the most part they are loose bordering on diarreah ALL THE TIME.  And after talking to some moms in my book club they pointed towards food intolerance.  I am going to start with Wheat because it would break their hearts if I started with fruit.  If it is fruit we will just have to suffer the consequences because they aren’t giving that up.  I may try dairy too, but I want to do one at a time to get a better idea.

We just started supplements, cod liver oil, for J this week.  I am still holding out judgement on this one.

We are having some melt downs in the computer department.  still trying to find a good balance.  some of the melt downs are in response to me saying it is time to turn it off or its not time turn it on.  Still working on a predictable schedule that works for everyone.  Wednesdays and weekends are hard because I can’t say “wait till you get home from school.”  He is also having some serious meltdowns when it comes to frustration over a few games.  He has been playing a lot of nickjr games and several of them are very video game like where the characters go on quests.  Sometimes he has trouble manipulating them to accomplish their tasks or to go on the right route and he wants me to do it for him.  I will show him a couple of times but after that tell him “practice it yourself or pick a different game.”  This has caused massive amounts of weeping, the fact that I will not bail him out at the exact same point in the game every time.  The fact that he doesn’t get it right on the 1st try, neither did I and I point this out, but to no avail.  We go from happy to inconsolable in 10 seconds or less.  When it happened this weekend hubby had the nerve to ask, “what is wrong with him?”  He’s 4, he has autism, and he is frustrated.  At this point, so am I.

If you stuck with me this long, thanks for letting me ramble, told you I had a lot on my mind. 

Need some humor?  Go visit The Fretting Zoo  I’ve been laughing for a couple weeks now.  Its a dry humor, but it speaks to me.

Sending an S.O.S.

Alright, for many many reasons, more than I am wanting to discuss right now, we are very seriously contemplating going wheat/gluten free for both kids.  I am scared.

If you do this/ done this:

Did you go cold turkey or wean the kids?

Any great recipies for kid friendly recognizable foods?  (J eats TONS of carbs and veggies but little else, we don’t want to end up on only veggies.  Little J eats tons of nuggets, hot dogs and dairy.  They both eat LOTS of fruit, which also may be a problem.)

Tips for affording this endeavor?

HELP!!!!!!!!!!!!

Well we tried

Against my instinct I took J to the movies last night.  He has been wanting to see The Water Horse since the first trailer aired in early December.  Honestly, so have I.  We haven’t taken J to the movies in well over a year.  The last time we went we just thought he was too hyper, when in reality he was too over stimulated.  One of the biggest problems is the surround sound.  It is just too loud for him.  So I had planned to rent it as soon as it came to video.  I didn’t want to risk going to the theater, paying “big bucks” only to have to leave part way through.  Yesterday afternoon hubby called to see if I wanted to take J to the movie theater on base b/c it was playing for one night only.  I decided it was worth a try only because that theater is cheap, and J is free. 

I’m still not sure if it was worth even the cheap price.  With in 10 minutes he was asking to come home.  The sounds were just too much for him.  Every time the “water horse” made a sound, whether it was the baby squeaking/ squealing or the adult roaring he covered his ears and repeated over and over “Too loud.”  Every time the canons/guns were shot, he covered his ears with his hands and mine and said “I wish to go home, I really wish to go home.”  I kept coaxing him to stick it out to the end, I think I was only successful because in between the noisy parts there were some really great and captivating shots of the water horse that would make him forget for a few minutes that it was too loud.  I feel a little guilty for selfishly making him stay.  On the other hand I am proud of him for not going into total melt down mode.

When we got home hubby asked him if he liked the movie.  He said “no, it was too loud.”  So I think we will still rent it, and watch it at home, at a normal sound level.  He might just like it.

Oh and I guess we will be skipping the Veggie Tales Movie playing on base next week.