Friday, March 30, 2012

The Outcast....I mean Peanut Table

The last 10 years has seen a huge growth in peanut allergies. Peanut allergies affect about 1.3% of the population and are the leading cause of sever food allergic reactions. I wonder why that is? When I was in school you NEVER heard about peanut/tree-nut allergies- or very, very rarely. Now- there is at least one child with a severe peanut allergy in every classroom. Probably more than that. - with no explanation why. One theory suggests  that “clean living” and more medication use leaves immune systems in a condition that is more prone to attack harmless proteins, such as those in foods, pollens, and animal dander. It is a very scary thing- and I am thankful that we don't have to deal with that with any of our kids.

Gone are the days of throwing together a PB&J sandwich for your kid's lunch. Treats for parties must be approved first, and many classrooms  now actually  ban  treats from home for birthdays and class parties. Having been a room mom- I know first hand what it is like trying to plan a party around allergies- luckily I  have a good line of communication with the parents that have kids with allergies so there is not any confusion on what they can or cannot have.

So what happens if a child DOES bring a PB&J for lunch? Well- they sit at "The Peanut Table" as far removed from the rest of the cafeteria as possible, without actually having them sit in the hallway.  Don't get me wrong- I know the dangers of a severe peanut allergy, and I know that peanuts don't actually have to be ingested to cause a sever reaction requiring an Epi Pen and a trip to the hospital.  And I am sure most parents know that as well- and don't send their kids with PB&J in their lunch.  But........... I am sure some do- and they get to sit in Siberia. (again- please don't mistake this as bashing kiddos with peanut allergies)   I have heard that a lot of schools "Isolation Table" is strictly FOR the kids with the allergies. Our schools basically just went "Peanut Free" and that was that. There was a lot of complaining and grumbling, but eventually the rest of us just got used to it.

The Peanut Table. In Siberia.

This table in The Boy's cafeteria is all the way back in a corner, by the milk coolers. It is about 5-7 or so feet away from the next nearest table. There are usually 3 chairs and nobody else is allowed to sit there.  Again- while I understand the danger- can you see why I call this The Outcast Table? Since the school is grades 3-5, I would hope those that pack lunches tell their parents no peanut butter, because what 8-11 year old wants to be ostracized and not be able to chat with friends at lunch?
Yum- Ants on a Log

I am just flabbergasted that a staple in most households holds such danger for so many now. I eat peanut butter by the spoonfuls, I used to do a food theme in my preschool class and they would make Ants on a Log. During our unit on the circus I would bring peanuts in to shell, eat and then use the shells at the sensory table and in art projects.  Alas, those days are long gone.   Substitutions such as cream cheese and Nutella are usually acceptable, and it's not that hard to roll with the changes. 

If you have a child with a peanut/tree nut allergy- what issues do you have with public schools? Has your school gone "Peanut Free". Do you have a 504 in place for your child?  Have you encountered irritation or downright hostility because of it?   Let me know- I am very curious!

Wednesday, March 28, 2012

Hate my diagnosis- hate me? I don't think so.

I read a blog today titled "You can't hate Autism and expect acceptance" by Mama Be Good. It was a very well written article that I completely disagree with.

"A parent cannot fully and unconditionally accept his child, but not "the autism."  That's not unconditional.  That's not acceptance.

Why? Children quickly and easily feel their parent's negative emotions and they internalize it, believing that they are at fault for their parent's stress.  While you think you can separate out "the autism" from your child, hating the negative symptoms while loving the child, your child doesn't make such fine distinctions.  He will recognize the feeling, maybe only subconsciously, and he will translate it to "I am acceptable only if I hide part of me.  That part of me is shameful.  There is something wrong with me." "

I think that nothing could be further from the truth. The Boy is awesome, sweet, lovable, smart and IN NO WAY SHAPE OR FORM DEFINED BY AUTISM!  Just as he is not defined by his blonde hair or blue eyes- he is who he is and that is that. I love my son- I love his quirks, I love his honesty and I love his complete lack of judgement for anyone else. I can and will say that I hate autism. On the days he just can't function- where everything is too bright, too loud, too something. The nights when he doesn't sleep, the looks on the kids faces that just don't get him at all when he is talking completely in movie and TV phrases- or meltdowns because "something" is wrong. Yeah- I DO hate autism on those days. As he gets older he is doing so much better. But just because I hate autism does not mean I do not accept my child- nor hate HIM in any way.  I say it all the time- Autism DOES NOT define my son. He is who he is and autism did NOT make him that way. If he didn't have autism would he be a better person?  Easier to love? You can love your child, and hate their diagnosis- it IS possible- and NO it doesn't make you a bad parent.

I say I hate it because it makes life so much more difficult than it needs to be for The Boy.  He misses out on the things that others  take for granted. Birthday parties, playdates, sleepovers, being able to have a conversation, (NOT in movie or TV speak) having independence and age typical skills. Just because I want and work for people to be "accepting" does not change at all how life is for him...and the worry I have for his future.  

I hate the emotional roller coaster that is Autism.  I will not embrace it. I see on a daily basis what The Boy is missing out on- even with all of his amazing progress. And it pisses me off- and dammit I am allowed to be pissed off and hate Autism. This makes me work harder at advocacy, changing perceptions, and helping to change things. 

I don't hate one tiny thing about HIM. Autism isn't HIM. He is The Boy- plain and simple and I adore him.

Me and my boy. Love him- HATE Autism!

Thursday, March 22, 2012

One kid at home rocks!

My Teenzilla is in Washington D.C. this week with her school. It is an amazing, once in a lifetime trip that costs a shitload of money, but is something she will never forget.

Since she left on Monday I have only heard from her a handful of times- but every time she is tired but excited over everything they are doing. They never stop- from Gettysburg to Annapolis they get to see and experience so much, I am a little jealous I couldn't afford to go.

This week has been so weird and quiet. With only The Boy at home and The 20 Something popping in and out periodically I have got a taste of what it is like to just have one kid. Mornings have been less rushed, there is no arguing over TV, snacks or, well anything. Dinners are easier and laundry was noticeably less.

To put it simply- it has been GREAT! I miss Teenzilla of course- but wow- we have never had less than 2 kids in the house! Barring sleepovers of course- but that's it.

My beautiful girl returns home early Saturday morning, and I am sure she will be exhausted, hungry, and full of great stories about her awesome trip. The peace of the last week, the lack of yelling at her brother, and him crying about how mean she is will have ended.

And I can't wait to see her.

Pretty happy at 3:00 A.M.

Tuesday, March 20, 2012

Let's Play Ghostbusters!

Who ya gonna call?

The Boy LOVES Ghostbusters. Ever since he saw the first movie he was hooked- and he (and the rest of the family) have seen them a BAZILLION times. We have watched the cartoons (thank you Netflix) and played the video game.  He knows the characters,ghosts,and the equipment, and much like dinosaurs he can tell you aspects of the movies and the characters that just the average fan wouldn't know.

His latest obsession are the videos on YouTube- called Let's Play Ghostbusters- a video game for a system we don't have but apparently, according to The Boy will be getting soon.  

He has now taken to playing Ghostbusters at the after school program- or at least trying to play. This is so awesome- actually PLAYING the game- using his imagination and getting away from the screen!  He really wanted the other boys to play and asked if they could watch the video on my phone.

The Boy then attempted to assign roles and tell them they needed to be following the script- which of course they didn't know. I listened to him try desperately to explain to them what they needed to do, growing more agitated as the other kids tried to tell him they didn't know the words they were supposed to say. Then I heard him tell them "I am going to bring my Alphasmart home and write a script for you to follow so we can play this on Thursday."  The other boys readily agreed and then they ran off to do other things.

Just as I was getting ready to intervene and stop what I saw as a runaway train leading to a meltdown- he CALMED HIMSELF DOWN,  used some  problem solving skills, negotiated with the other kids, CALMED HIMSELF DOWN, and then ran over to tell me all about it. My heart was so happy, I was grinning from ear to ear and I grabbed him in a huge hug. And just like any other neurotypical kid- he gave me a quick squeeze and then ran off to join the other kids.

This is a HUGE milestone!  Kids on the spectrum have such a hard time with imaginative play, and The Boy is no exception. But just because a child has difficulty with a skill doesn't mean they can't learn it. It just takes more work. It is important that we focus on our children's strengths and build on this. And I have been doing exactly that for years- and today was the ultimate payoff- for him and for me.

Monday, March 12, 2012

Letting My Freak Flag Fly!

I found a great blogger, and she put out the challenge- "What's your weird?" and asked fellow bloggers to share stories of our own idiosyncrasies. Parenting With Aspergers  is an Aspie Mom raising 3 kids, all on differing parts of the spectrum.   She reached out to the Facebook community with concerns about her son starting 6th grade at a new school, and being nervous and worried that kids would think he was "weird" and make fun of him.

She got an amazing response. Bloggers answered the call, and after reading them- I am amazed how many things others consider to be "weird" about themselves I TOTALLY relate to, and find them to be not so much weird as "normal in the extreme".

For instance- I CAN'T sleep if the closet door is  open even a crack... nope- it has to be closed tight.  I am OCD about the way the glasses go in the cupboard and laundry has to be done in a particular order- whites, darks, reds then jeans. And pity the person who puts a towel or washcloth in with any of that!  I have a weird obsession with cheerleading- forced my Teenzilla to do it for years to relive my glory days through her. I believe in ghosts, I  believe in "The Rock Goddesses" and they are helping to control my life. If they are out of wack- I am out of wack.   And these things are just a fraction of the weird that is me- at least all I will admit to right now!

This has been a great experience for me- reading all of these- getting to know this cool new blogger, and being invited to join such an amazing movement all to help a boy, who may have Aspergers, but has the same concern as any other kid in middle school- "What if they think I am weird?".

The truth? No one is "normal" and there will always be someone who thinks we are the weirdo because they can't embrace their own weirdness.   In a world where we’re constantly comparing and judging and shaming, I find a little peace in knowing that the one thing that we share in common is our freak flag. 

These bloggers wrote some amazing stuff- go check them out- and LET YOUR FREAK FLAG FLY!!

Autism hates Daylight Savings Time

Ahhh- it's that time of year, the time when we "spring forward" and gain extra daylight, anticipate the arrival of spring and most importantly LOSE AN HOUR OF SLEEP! In an autism household- sleep is a precious commodity, one that is horded like fine jewels or Nutella.  Nighttime wanderings, odd sleep schedules and the like is something that most parents with kids on the spectrum endure. Melatonin is the Autism parent's best friend. But when those clocks change-  at either time of the year- it can send our kids into a tailspin that can take a whileto recover from.

The Boy, like most autistic children, NEEDS structure and routine. He doesn't like abrupt changes in plans, although as he gets older that seems to be getting a little better.  But when things don't go as they should- in his mind anyway- it is prime time for massive frustration, irritability and possible meltdowns. The time change   is not just an inconvenient part of life for him. Having extra daylight means absolutely nothing.  The clock on the wall and his internal clock are now different. While his body (and the Melatonin) are telling him one thing- his dad and I are telling him something different- and it messes him up. 

In years past- the time change has been a source of agitation for the whole family. We have to adjust dinner time, medicine time and try to ensure that the first day of the time change he is resting, relaxing and hopefully prepared the following morning for school.  I can't count how many all nighters we pulled (melatonin and Clonidine would get him to dreamland, but would not keep him there.) He was moody, over tired, and not a joy to be around at all. Our lack of sleep made us just as irritable, and of course that made life just all around miserable for everyone. 

This year (knock on wood) the change has been uneventful. In fact- he spent the night with his grandparents Saturday night- so he wasn't even home for the initial change over. I was VERY worried about this. But when I called on Sunday morning,Grandma said he slept all night,and only drank about half of what we refer to as "magic juice" a juice/melatonin/clonidine cocktail he gets every night at 7:00 PM. He then slept until 9:00 A.M.- which was actually 8:00- so his body clock was actually right on time.  We were thrilled, but of course, the skeptical little devil on my shoulder was telling me it was a fluke, and come Sunday night and Monday morning we were going to have a battle royale. 

But to my surprise and supreme happiness- he went to bed right on time last night- even though it was still light out- and slept ALL NIGHT LONG!  No wandering, no up in the middle of the night watching TV, no sneaking to the kitchen for a snack. When I woke him for school this morning, I was prepared for Cranky McCrankypants to make an appearance and the morning to be a roller coaster ride.  But- aside from the ritual of dad carrying him downstairs and depositing him on the couch- it was a "normal" morning. He was tired, slow to get moving- but who isn't on a Monday? Especially a dreary, rainy Monday like we have today. 

We prepare for WWIII at all holidays, family gatherings, family outings and yes for Daylight Savings Time. And not so much as a whimper (ok- may a little whimpering). But NOTHING like the last 7 years. I cannot tell you how excited I am- and for those parents with kiddos on the spectrum- you know this is a HUGE thing!   

I think he is getting a little more mature, and the fact that he LOVES his calendar and knew this was coming made the difference. I really don't know and I really don't care. Whatever the reason for such an uneventful change of the clocks is irrelevant. It happened- and I am not going to question it.   I am going to revel in the "normalcy" of it all- and then I am going to take a nap.

Tuesday, March 6, 2012

Inclusion or Seclusion? What are we teaching our kids about Special Education?

I was having a conversation with the boys in the after school program I run yesterday. We were talking about random stuff,  zombies, food, basketball- all things 9-11 year old boys like to talk about.  The conversation turned to a boy in the special ed. class, who  had a major meltdown at school- screaming for almost an hour-  and then to the rest of the class in general.

They turned to me and asked this question:

"Ms. Dawn- why do some of the kids in Mrs. B's class even come to school? They don't even know
what is going on- are they even learning anything?"

First - I am thrilled that they are comfortable enough with me to ask this, second- this was not said in a cruel or mean way- it was a serious question.  I asked them what made them think this? And they said- not all of the kids- just some of them,(there are a couple of lower functioning kids- little to no speech, etc) couldn't learn anything so why were they at school. 

I pondered their question for a minute- thinking of the best way to answer them. As I said- they weren't being mean, but they truly felt this way and needed an honest answer.  

"Since I don't teach the kids on a regular basis- I can't say what they do or do not learn, but I can say that everyone learns, just maybe at a different pace, and maybe not the exact thing you might be learning."

They were quiet for a second, and then they said, OK Ms Dawn! Can we have snack now?  So did what I say make sense? Did they internalize it to ask their parents about later? Did they care at all? I have to think they did care- or they wouldn't have asked in the first place. I kept my answer short and sweet- when dealing with 9-11 year old boys- anything longer or more detailed would have been completely tuned out. 

My heart was heavy though, this is what they see, what is modeled for them, what they base their perceptions on.  Kids learn what they see, and being that the special ed class at The Boy's school is completely self contained- the rest of the student population doesn't have much of a chance to deal with them, get to know them, develop any kind of tolerance or sensitivity towards them.  They are not considered a part of the general education population, despite the teacher's amazing enthusiasm and effort to make the class less stigmatized. But since the students attend maybe 2 gen. ed. classes, and specials like art, music, gym and computers, they are truly not an integral part of the school community. The other kids will say things like "So and so was in MY class for science today"- lending credence to my theory that the special needs kids- even the higher functioning kids- are not considered part of the school "family".  It makes me sad. 

My thoughts on how to remedy this? The teachers need to be collaborating more!  Inclusion is a tricky thing, but it seems to be the way education is going.  There needs to be MORE EDUCATION FOR THE EDUCATORS!  They need more professional development days that deal strictly with inclusion, and how to teach the student population how to react to and treat these kids. Whether it is an invisible special need, like autism, or a something the kids can SEE, like Down's.  Sure there are still going to be bullying issues- it's not a perfect world we live in, but this could go a long way towards making bullying a rare occurrence as opposed to an every day thing.

The  fact is, mainstream schools are expected to smilingly and graciously accept any child sent their way, no matter what their need. Even if everyone involved can see that it isn't necessarily best for anyone. If extra money and support was readily available, and this was done as a positive move for both the abled and disabled communities to have more interaction I would probably feel better about it. But as it stands, it is a political move forced upon already cash strapped schools with an awkward, unorganized and red taped process that leaves parents,teachers and administrators feeling frustrated. 

I just hope that at some point the value that these kids add to their school is universally accepted. Perhaps that's when real inclusion begins?

Saturday, March 3, 2012

We Should All Live By Dr.Seuss Quotes

Who can't quote a least ONE Dr.Seuss story quote? These are the books that a good majority of us learned to read from. As kids- the lessons were most likely lost on us- but hopefully as grown ups and parents we can hear or see them and smile and nod to ourselves as the full meaning sinks in. 

My very very favorite!

So- this is essentially a very lazy blog- but I LOVE me some Theodore Geisel.  How many of these quotes can be applied to a kid on the spectrum?  His wonderful quotes, lessons hidden (and not so hidden) in his stories were and are a part of my life and have been a part of all my kid's as well. I hope they will be as big of an influence on future generations.