Invisible Special Needs

So I just spent THREE hours reading blogs written by mom's with kids with Asperger's or Autism, and websites that touted the iPad as a great resource for these kids. Apparently there is a butt-load of apps specifically designed for kids on the autistic spectrum. Who knew?

Now, I don't actually *have* an iPad, but my ex does. I just sent him an email with a few links to apps that might be helpful to our son.

What's gotten me on this special needs kick all of a sudden? A number of things. Some silly. Some profound.

Here are a few, in no particular order:  

Limited Social Skills in my Kid is leaving me ... Pissed.

I'm so frustrated I can't even type.

I'll post later after I vent to a few more people.

Unidentified Hell

My son, who is nine, does not have autism. (Or Asperger's Syndrome.) He is highly verbal -- sometimes not stopping for breath. He looks you in the eye and desperately wants to be a part of things and to have friends. These are not things that kids with autism do, or feel (as we understand it.)

But, he does: feel like you are stabbing him if you touch him suddenly, and if he doesn't know you well, he doesn't want you touching him at all. Sometimes swimming lessons and tae kwon do classes would end in screaming because of instructors correcting his form. He's ended up in the corner, literally, yelling at the top of his voice when doctor's want to do a physical exam or change the wire on his braces.

One time he threw up because he was getting an impression of his mouth done at the orthodontist's and it took 45 minutes to coax him through the rest of the appointment. Actually, if I remember correctly, we even needed to come back a different day to finish the appointment.

When the doorbell rings and the dogs go barking and charging to the door, Robert covers his ears and yells even louder than them. He used to do this when the coffee grinder, blender or vacuum cleaner would run, too. And he still does it if the vhs tape comes to the end and suddenly shuts off with that loud "snow" before it rewinds. He still refuses to be around the vacuum, and obviously to vacuum his room.

He hates to wear socks and underwear, can't stand pants with buttons or snaps because his fingers have a hard time with the mechanics and he doesn't like to write. (I think the pencil or grip may hurt his hand.)

He wants friends but doesn't understand it when they don't want to play his games. Instead of asking a kid to play at a city pool with him, he'll jump on him in the water. When he hugs you, he often will hang on you -- or "hug you to the ground" -- causing discomfort or pain.

He doesn't understand where he is with his body a lot of the time. He lays on top of his sister -- or his dogs -- when he really wants to snuggle or be close to them to show affection.

He's self-centered. And I mean that not in a rude way. It's just that sometimes he's aware of other people only as it pertains to him in his own universe. For instance, he's hyper-sensitive if you've done something to negatively impact him, like bump into him or ask him to brush his teeth. These will be responded with -- sometimes -- physical retaliation (because it feels to him like your accidental bump was a punch in the arm) or a rageful yell and stomping of his feet. On the other hand, he has absolutely no idea when he negatively impacts you. To the point of blatantly denying that he's just stepped on your hand when there were two witnesses to the action. He didn't realize he'd done it, therefore he didn't do it.

He knows an exorbitant amount of facts about sharks and snakes. He's memorized verbatim, in some cases, several EyeWitness science videos and randomly spouts off facts to us. He's highly intelligent, does math in his head that I can't do (though that's not saying much actually) and excels at chess.

He hates to wear clothes and prefers to be naked, even in the winter. Although, conversely, he loves footy pajamas. He refuses hats and coats and gets belligerent and defiant if you "make" him take one anyway.

He's impulsive. To the extent of randomly leaving school, home or a park without telling anyone where he is going in the space it takes to gather your belongings or turn around and finish your short conversation. Thusly, for years I was terrified to take him in public, crowded areas for fear I would lose him.

He's impulsive less with his hands now. We've spent years working on vocabulary to describe his emotions instead of lashing out with his hands. Unsupervised playdates were (and still are, but for different reasons) an impossibility. Years ago, we had to leave many a birthday party or open gym because of him punching a kid in the stomach. Now I believe it was because he got overly stimulated and felt like the world was exploding around him with lights and sounds and abrasive textures and questions and taunts and people touching him and getting in his space. It was him defending himself. He still does it now, just not as intensely.

He doesn't transition well. If you tell him it's time to stop doing what he's doing and do something else (even if it's something you know he likes), you will meet with either: stony silence (and I haven't decided if he's pretending he doesn't hear you so he can keep going, or doesn't think you mean him even though you say his name, or he just really doesn't know you exist right now because he's hyper-focused on his task and a bomb could go off beside him and he'd only dazedly look up), abject refusal, or tantrum. Though, tantrums don't happen but rarely now, and usually need a good working up to.

If he's caught lying or breaking the rules, he'll tell you it wasn't him, it was his imaginary friends (Punching Boy, Skateboard Boy, Mean Boy, etc.) that did it, or maybe that they told him to do it.

Rather than believing this to be signs of early multiple personalities, psychotic or sociopathic behavior -- thoughts I once upon a time entertained -- I think this was possibly a way of him trying to explain his impulses. He can't stop them. He feels powerless and that he's so far out of control of his behavior when he gets those impulses, it's like he's not even doing them. Someone else is. Because he certainly wouldn't choose to do them. In fact, when he realizes what he's done, sometimes he'll start hitting himself in the head.

One time when I was concerned about his ability to empathize, we were on a playdate and Robert was playing by himself, the girls were playing in a different room and one of my friend's children -- a toddler -- started crying outside on the deck. Robert announced that the boy was crying. After we'd checked that he was alright, my friend pointed out that Robert understood that another being was in distress and sought out help. That was empathetic. But maybe he just didn't like the sound of his crying and needed someone to make it stop. And now I remember that crying babies, especially new little ones, were like the coffee grinder to him. He'd run out of the room when he'd become too anxious.

He hates rice (even rice pudding) because of the texture. He can't stand to have his hair combed, or cut.

He can play in water and sand for hours. He likes to bury things in yarn, clay, silly putty and sand.

He needs to know exactly what will happen in new situations like an orthodontist procedure or playing laser tag for the first time, or he will become agitated.

He is oftentimes inflexible in his mind. If he expects an O.T. session or school interview to go a certain way, and it doesn't, he gets mad and loud and refuses to co-operate. Though I have a theory about this.

When he rants: You can't make me! I'm not doing that! I'll never go to school! etc., I believe he's saying: You can't make me do that yet. I'll never go there yet. I think it is his socially unacceptable way of creating some time for himself to wrap his brain around transitioning to a new thing.

An example: we were talking the other day about trying O.T. (occupational therapy) again and he wanted to do it.

"Even if they ask you to do dumb things?"

"Yes!"

"Even if they ask you to do things you don't want to do?"

"Yes." (he's pausing here) "What would they ask me?"

"Maybe they'd ask you to practice writing with a pencil."

(blow up)

"I'll never do that! I'll never go to school! I'm NOT doing that!!!!"

I ignore the outburst. He flops on the couch and I putter in the kitchen.

"Ok. I'll go."

Less than one minute later. He just needed to wrap his head around it and come to it on his terms.

His favorite food is cheese sandwiches. And often doesn't want anything but those. And I've done enough research to know that if your body craves and is "addicted" to a certain type of food, you are often 'allergic' or sensitive to it. He's also constipated a lot. Probably from all the bread and cheese. Gluten and casein.

I've also done enough research to know that every one of the statements I've written here, are also behaviors and symptoms of kids that fall on the autistic spectrum.

It makes me wonder, is all. It keeps me awake at night.

I look back to when he was two or three. He didn't get his vaccines and then suddenly become unresponsive and regress into himself. He looked me in the eye and crawled into my lap to be held and giggled.

But he did line up his cars in straight lines. And when he met Paul's mom (Robert's Nana) for the first four times, he wouldn't make eye contact and refused to acknowledge that she was even in the room.

And somedays it feels as if he's been frustrated and angry since he was four years old.

He's not autistic because he's highly verbal, looks people in the eye and craves interaction, socialization and friendships. But everything else I've listed points to a kid on the spectrum.

So what's going on for him?

Hyperbaric Oxygen Therapy

Because of my last posting, some of you may be wondering what hyperbaric oxygen therapy (HBOT) is.

Overview

* A painless procedure in which patient is exposed to increased pressure, allowing greater absorption of oxygen throughout body tissues, resulting in many healing and therapeutic effects.
* Oxygen floods areas that are oxygen-starved, stimulating cell growth and regeneration.
* US FDA approved treatment for 13 indications and is now widely used in the USA, UK and China in the treatment of neurological disorders such as Cerebral Palsy, ADD/ADHD, Autism, Stroke, Alzheimer’s disease, immune dysfunction, spinal cord injury, anoxic brain injury, near drowning and other off-label indications.

Hyperbaric Oxygen Therapy (HBOT), is a non-invasive method that uses 100% oxygen under increased atmospheric pressure in a controlled total body chamber. It started as a medical treatment to speed up and enhance the body's natural ability to heal. Today, it is an approved modality that is most often used as an adjunct or enhancement therapy for a wide variety of medical conditions.

How does HBOT work?

Normally, the red blood cells transport oxygen throughout the body. With HBOT, oxygen can be carried to areas where circulation is diminished or blocked since it is dissolved into all of the body’s fluids including the plasma, the central nervous system fluids, the lymph, and the bone. Moreover, extra oxygen are able to nourish the damaged tissues making the body capable of its own healing process. The increased oxygen also greatly improves the body’s infection control as it enhances the function of the white blood cells and promotes formation of new blood vessels in the affected areas.

Inactive or damaged neurons receive just enough oxygen to survive but not enough to function or fire electrically. With HBOT, the neurons become reactivated and are facilitated for function once again. The reactivation of these cells leads to plasticity such that the brain is able to learn or relearn the skills that are necessary for proper function of both the body and the brain makes new connections for recovery of trunk, limb and muscle movement and the brain, as it relates to cognitive function.

What is plasticity or neuroplasticity?

Plasticity or neuroplasticity is one of the most widely celebrated discoveries in the 21st century. It is a mechanism that proves brain repair is possible. It involves the redirection and reeducation of neurons to create new pathways to learn and improve both cognitive and motor skills. Plasticity follows any brain insult when the brain and body compensate and attempt to overcome and rewire their connections to learn to take over the tasks of the damaged neurons.

SUMMARY of Benefits:

* Provides the extra oxygen (with minimal side effects) naturally required to reach the damaged area where the body’s natural healing ability is unable to function properly
* Improves the quality of life of the patient in many areas when standard medicine is not sufficient
* Ensures the best recovery possible when used in conjunction with other therapies

Applications

HBOT can be used to treat patients who suffer from various diseases or injuries associated with hypoxia, or lack of oxygen on a cellular level. It can also be used for its antibiotic properties as it enhances infection control. Some conditions that were found elicit good response to HBOT include:

* Stroke
* Cerebral Palsy
* Traumatic Brain Injury and other head injuries
* Chronic Fatigue
* Autism
* Lyme Disease
* Migraine
* Multiple Sclerosis
* Near Drowning
* Recovery from Plastic Surgery
* Sports Injuries
* Air or Gas Embolism
* Carbon Monoxide Poisoning
* Compartment Syndrome/Crush Injury/Other Traumatic Ischemias
* Decompression Sickness (Bends)
* Diabetic and Selected Wounds
* Exceptional Blood Loss (Anemia)
* Gas Gangrene
* Intracranial Abscess
* Necrotizing Soft Tissue Infection
* Osteoradionecrosis and Radiation Tissue Damage
* Osteomyelitis (Refractory)
* Skin Grafts and (Compromised) Flaps
* Thermal Burns

US FDA approved indications

* Carbon monoxide poisoning
* Gas gangrene
* Crush injury/acute trauma
* Diabetic foot ulcers
* Decompression sickness
* Selected problem wounds
* Necrotizing soft tissue
* Osteomyelitis (refractory)
* Radiation tissue damage
* Severe anemia
* Skin grafts and flaps
* Thermal burns
* Air or gas embolism

Some off-label indications

* ADD/ADHD
* ALS
* Alzheimer’s
* Anoxic Brain Injury
* Autism
* Bell’s Palsy
* Cancer Cerebral Palsy
* Chronic fatigue
* Diabetes
* Lyme Disease
* Multiple Sclerosis
* Meniere’s Disease
* Immune Dysfunction
* Stroke
* Spinal Cord Injury
* Traumatic Brain Injury
* Vascular Disease
* Crohn’s Disease
* Fibromyalgia
* Heart Disease
* Infections
* Macula Degeneration
* Migraines
* Mitochondrial Disorders
* Near Drowning
* Peripheral Neuropathy
* Post Electrocution
* Raynaud’s Phenomenon
* Reflex Sympathetic Dystrophy
* RetinitisPigmentosa
* Rheumatoid Arthritis
* Severed Limbs
* Sickle Cell Crisis
* Sports Injuries

Side Effects

Although HBOT is extremely safe, some patients may complain of:

* Barotrauma to the ears and sinuses due to changes in pressure
* Temporary and minor changes in vision
* Oxygen toxicity due to overexposure

Treatment guidelines are to be strictly followed to prevent or minimize the side effects.

References:

* Neubauer, V. I. .Hyperbaric Oxygen Therapy
*and Intensive Pediatric Exercise http://www.oceanhbo.com
* Hyperbaric Oxygen Therapy Testimonials & Resources
* New Developments in Child Neurology
* Rapid Recovery Hyperbarics : Research References
* HBO Treatment: Autism and Hyperbaric Oxygen Therapy
* Wikipedia: Types of Oxygen Toxicity



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Myriads of Topics

So, I've been cleaning. And this is my beautiful, slightly more organized garage.

Despite this, the mice are back. Eeew. Paul and I saw one last night while we were watching a movie, so we set some more traps. Bummer. It's been months since we've had any. I thought they were all gone. For good. But no.

I got two of the bastards in traps this morning. Then Humphrey (our six month old puppy) set off the other trap, so I had to move them under the sink where he couldn't sniff out the peanut butter. I'll put them back before I go to bed tonight.




This picture represents the accumulation of stuff that litters the bottom of my van at any given time. Paul cleaned out the van earlier this month and this was the result. (He's always giving me shit for how dirty my van is.)

But THIS, dear reader, is the stuff from HIS car. (heeheehee)




No more shit from Paul. Or if he does hand it to me, I can give it right back. (*insert cheesy smile*)




I'm already thinking garden. If I'm going to be planting sugar snap peas and spinach and broccoli in March, I best start thinking of ordering the seeds and preparing the ground next month. !!! It still feels like the dead of winter over here. It doesn't seem feasible to start working the ground in a few short weeks.

I'm still knitting scarves for (fill in the blank's) sake! I'm working on a yummy cream and mocha striped one right now, and learning about right side and wrong side of project.

We had a Manga/Knitting Homeschool Group here yesterday. Yes, the two don't seem to go together, but my daughter was wanting some manga buddies and I wanted some crafting/sewing/knitting time -- so we combined it. It worked fairly well actually. The kids drew some manga for about 45 minutes, then I tried teaching some Japanese language with the flashcards I'd picked up, but one of the kids already knew what I had prepared! All of it! Turns out he's been taking Japanese lessons through Human. His mom said it was better than Rosetta Stone and much cheaper ($25). I'll have to check it out for Aubrey.

Then the kids took turns playing You Tube videos of their favorite Japanese musicians and listened to some Japanese music. And we finished off the "club," as Aubrey calls it, with an episode of CardCaptor Sakura in Japanese with English subtitles.

The moms present knitted instead.

Success.

We'll be doing it next Friday, as well.




This is my very first scarf, knitted for myself, in August/September of 2009. It's super long and wide, the way I like scarves.



This one I finished for a friend at Christmas.



And this will be my next sewing project. Robert picked out this rockin' fabric for me to make him a cloak from.



Despite the kids really loving their new classes at HomeSource this term, Paul and I have talked it through and we've decided to put the kids back in school and end this lovely home/unschooling experiment. Sigh.


(kids in gymnastics class)

Strangely enough, (and I'm really so relieved) I am able to accept this change without feeling like a failure. And I don't feel like I am dumping them back into the hands of unfeeling, underpaid district employees. (Well, maybe a teeny bit.)

I started this homeschooling path because Robert wasn't getting his needs met in public school and the private school I attempted to put him in turned him down -- and everywhere else (lottery alternative schools) had waiting lists. So I stayed home with him and it was brilliant. His behavior changed, we got closer in our relationship, he became more relaxed. In fact, I had so much fun that I talked Aubrey and Paul into having Aubrey come home with us, too. And that was fun, too, for about six months. And then she got really bored.

We tried curriculum with her, but I didn't like doing it. And with Robert being unschooled, it didn't really work to do curriculum with her at the same time. Also, their ages and interests were just enough off that whatever Robert wanted to do, Aubrey didn't and whatever Aubrey wanted to do, Robert didn't. So someone was always being neglected during large chunks of the day. And that wasn't working.

Our cohesiveness started failing, the kids started hating each other and I've started falling back into, "What are we going to do today?" with my eyes wide like I'm trapped in front of an oncoming semi.

I've also needed considerable more "alone" time this past six months than I did all of last year. I've got personal challenges that I'm struggling with and a book that I'm trying to finish. So, it just feels like time to move the kids back into school outside of home. I'm both sad and excited.

Sad because an unschooling/homeschooling lifestyle still has beautiful, nurturing connotations that I want for our family. And there are so many "pros" for our family. Namely that the kids' interests are addressed more than they would at a more traditional school (even an alternative one.) For instance, between the two of them, the kids are taking Chess, Swimming, Ballet, Gymnastics and Drawing Anime. There is no way that they will get that in school, no matter which one I put them in. And if we go with a private school (which is a fairly probable possibility), we won't have the money after paying the school's tuition, for them to take more than maybe one of these "extra-curricular" activities.

And that's another thing. I hate that art and movement and dance and chess are extra. They should be the norm! They should be in every child's week (if they want them.) And I'm sad that Paul and I are effectively taking those opportunities away from our children. :(

The other really big plus for homeschooling Robert is his "extra" needs. If we opt for a private school, we may have to advocate harder for those needs, than we would if we did public school with an IEP for him. So we are not sold on which place would be best for him. We're still researching.

As it stands now, all of the lottery schools in our city have waiting lists and the lottery for next year is not until March. Not too far away, but IF they get chosen, then school wouldn't start for another nine months. But frankly I'm not holding my breath for that. I've had Aubrey in the Village School's lottery at least three times and on the waiting list once. She's never got in. I had Robert in the lottery for Ridgeline Montessori (as a sibling because Aubrey was already in Ridgeline at the time -- which meant he got priority over any slots available) and he still didn't get in. He was on the sibling waiting list. (As opposed to the regular waiting list.) Sigh.

There is a private school (Eugene Waldorf School) that has openings for both the kids right now. Barring Robert's application gets approved. So we wouldn't have much wait and could get them in this month probably.

Other options are: wait until the lottery and see if the kids get into any of the other alternative schools (tuition free) -- which is uber-nice because Paul's worried about his job stability just now. And then put them into Waldorf in March or April if the lottery schools don't work.

I have a tendency to want to hurry through to the next step when a decision is finally made.

So ... Paul and I have decided it's best for everyone involved (collectively anyway) that the kids go back to school. So, now I want to just make that happen and be on to the next part of the journey. But hurrying may be detrimental for Robert especially. When something new is offered to him, or when he's told "This is what's happening now," he digs his heels in and yells for all he's worth. :) Cheeky Monkey.

If I try to push him into a school setting when he's not ready, the first grade nightmare will happen all over again. And I don't want any more trauma for my baby.

We've got some diagnosis' in our back pocket if we want them (Sensory Processing Disorder, ADHD, and Oppositional Defiance Disorder) -- we laugh at that last one -- but more importantly we have some avenues to walk down to help him get re-integrated into a classroom. If we try to force him in next month before we start OT (Occupational Therapy) or continue HBot (if we decide to do that) or get him any counseling (which I'm skeptical of at his age), we risk it taking even longer for him to get into school without fighting at home or with the teachers and kids.

(Robert in the hyperbaric chamber -- HBOT.)



(I go in with him. The sessions last about an hour.)


(We do a lot of reading in there.)

I don't know. Robert's such an interesting little kid and he's so full of life. He really wants to make friends and maybe putting him into school would be excellent for him and he'll love it.

I feel like I need to help him with this transition though. How do I do that? Make home more like school? Talk about the things that would happen at school? Pump up the friends aspect? Take him to open houses and let him play on school playgrounds when school isn't in session?


Aubrey has SpiralScouts in a couple of hours (we're working on the Drumming Badge) and I want to soak in the tub with a book for a bit before that happens, so I'll close here. I hope this didn't fel too much like a rant. Just wanting to connect to whoever's listening ...

"Do you have a Special Needs Child?"

I don't like the term "special needs" when referring to a child.

"Do you have a special needs child?"

Well. Doesn't every parent?

My son doesn't have a label on him. He's not autistic, doesn't have ADHD, he's not explosive or oppositional or defiant. Nor does he wear a Sensory Processing Disorder button on his lapel. Though tee shirts don't come with lapels. But does my son have special needs?

Here's some questions for you:

Do I, as my son's parent, make sure he eats every three hours or so to prevent a whirling dervish in the living room? Or to avoid his little pink toes suctioning to the pillar in the dining room like those sticky lizards you throw at the wall?

Yes.

Do I utilize certain strategies with my son based on his particular triggers?

Absolutely.

I know that he hates to be tickled and will react in violence if you forget this -- and so we have a rule about tickling in our home. I know that he can be impulsive if the energy changes too quickly in the room. So I don't leave him on solo playdates yet.

Picture this: one moment, quiet lego play at Lego Club. Next, it seems -- quite suddenly -- that families are packing up to leave and a boy jumps up to show my son something cool and he grabs the boy's sweatshirt. A big fistful of cotton/poly. Just like that. Like a reflex. No one hurt. No harm, no foul. But come on. How many times do you grab someone's sweatshirt when they want to show you their room?

So I don't leave playdates.

There are certain ways of doing things at my house that help my son accept what goes on around him. When we go to the orthodontist I need to explain everything in explicit detail and in what order it will happen. And also sit next to him to hold his hand.

I know, a lot of the time, what may trigger my son into "inappropriate" behavior. Whatever that is. And so I act pre-emptively in order to prevent melt-downs. I always have something for him to do, I make sure we do several active outings every week and I try and get sand and or water play in as often as I can. The act of his hands sifting through the sand and building trenches for water to go through grounds him, connects him to the earth, and calms him.

My eight year old rarely has these tantrums anymore. Not because he outgrew them, like a magical age he reached or a day on the calendar that passes enabling you to change the way you deal with things and look at your environment. No.

They are more rare now because I have the privilege to stay home with him, where we learn together. I know more about him. I understand that if he acts defiant and I don't engage in his outburst, it goes away.

Tonight I make dinner for my kids and dog. I choose something easy, for my benefit, and vegetarian, also for my benefit. But I consider that the brocolli in it is my son's favorite veggie -- the only one he'll eat right now -- and the olives are my daughter's favorite pizza topping. The noodles are gluten-free for me, but I put real cheese on it, which my daughter quizzed me on before attempting any bites. I had given her mac and chreese (a vegan version) earlier in the day -- which after pushing her fork around in it and gumming three or four bites declared it "not very good."

When I announced dinner was ready, my son ran to the kitchen to examine it.

"Mawwwwmmm! I HATE that!"

I am immediately knee-jerk defensive. "You haven't even tried it!"

"Yes, I have!"

"When? I've never made it before!"

"I did! At Unity. I'm not eating that."

He hasn't been to his old daycare in about two and a half years. And, of course they haven't made this particular meal because I almost made it up myself. (I had cookbook inspiration.)

"This is the only food you are getting until tomorrow morning," I tell him.

His wheels spin. A solution. His voice changes as the caloric muse hits.

"I'll drink the whole jug of milk!" He is triumphant with epiphany.

"You can have one glass."

He is sullen again. He says something menacing at this point, I think. There is kicking of the tent set up in the living room, too, most likely. He counts the plates I am dishing up. Three -- because Paul is still at work.

"I SAID I'M NOT EATING THAT!!!" Think sub-woofer.

"I'm just setting some out. You can eat it or not." I have slipped out of the antagonizer role. I give him the option to sit with us at the table or go to his room by himself. He doesn't answer but he does join us at the table.

I don't manipulate with: "MMM. This is so yummy. You're really missing out." He's not stupid.
I don't highlight that he's not eating or nag him: "Eat your food. Eat your food. Eat your food."
Nor do I irritate him with: "Now remember. NO food for you later. This is it. Eat is now or nothing!"

The three of us engage in pleasant but silly talk during dinner and not so surprising, Robert starts eating. Probably without even knowing it. If I had called attention in some manner to his not eating the food, he would've remembered he wasn't eating it!

So. Does my kid have special needs?

Yes.

I like to think that every kid has some special needs -- some unique quality that the parents found quite by accident, or maybe they've always known it and the whole family works together seamlessly to create a safe and serene home for the children they have -- a place where everyone's needs are met.

Special or otherwise.