pondering things...

so I sit here at the computer, exhausted, after a difficult week with my son Caleb.

What made it difficult?

I forgot this week that his issues that come out as behaviors- are a disability. I bought into the lie that "he really can do it if we force him to, or con him to."

yup. I did. Just like parents of dyslexic kids who for years were told that their children were lazy readers- because all the other area of academics in their lives, they were doing well in. It took years, research and someone taking the time to listen to these children to realize that dyslexia was a REAL disablity and not an excuse for lazy children.

My son was restrained three times this week. Three. You would think after the first I would have called a meeting.......it's a warning that something isn't going correctly.

He is terrified of going to school. So angry that this morning he took off his clothes as the bus pulled in our driveway because he knew that we would not be able to force him on the bus, in this cold, in underwear.

Then, when my husband, already late for work (and he works for the governor who is watching for lazy state employees that she can lay off to fix her economic problems- you know ones that come to work late often...which is him...because of Caleb but he always stays late to make up the time)....stressed...and my 21 year old tried to get him in the car; he refused.

he walked up to me quietly and whispered in my ear, "I am running away but don't tell anyone because they will stop me."

When my husband left for work, I called the school and indicated that we couldn't safely get him to school after all; feeling guilt as a parent that I was not able to get my son to school; feeling fear as a parent because at what point will they hospitalize him for his "acting out"...

With a screaming toddler in tow, I convinced Caleb to cuddle with me while I put Sam down for a nap. Curling up with him, I asked him, "you know how much your daddy and I love you and for how long we wanted you, right?"

He answered, "1,000 million"

I responded, "more, can you tell me about school?"

Caleb explained that he hated school because play time was too long away. He thought it a better idea to do math, then play; read, then play. He proceeded to explain that when he has to work all morning and can't play until after lunch; that his body starts to feel funny. He told me that when his body feels funny, he looses his "good boundaries" which frustrates and angers him. That is when he starts acting out, or he gets bored until his head hurts.

What amazes me with his answer is that it seems to be always around 10:30 that he starts to "loose it" at school.

Second, he misses his favorite toys. He had some toys (a batmobile) that were taken by the teacher and returned to the locked closet because he was told they are toys for younger kids.

Third, he hates restraints. He went on to show me how they covered his mouth with his shirt and held his head down. He said his feet and hands hurt when they hold him down.

I have always been against restraints. I have been trained at my work that they are dangerous, only get temporary results, and teach kids with sensory issues to get the input that they need inappropriately.

The time has come for me to evaluate the effectiveness of this program for Caleb. When I homeschool him, he does very well. My confusion comes in with the question, "am I enabling him to shelter himself in his house?" Does a child with autism have to learn to wake up everyday and go meet life?

My husband pointed out to me that if a child is wheel chair bound, do we treat it as behavioral when he can't walk?

My son can't work on academics without physical breaks. He is socially developmentally delayed; batman toys are still appropriate for him. Restraints? Well, they just scare the crap out of me, can you imagine him? When the state has decided that spankings are abusive and restraints are ok (they are more likely to cause death and/or injury) then what kind of world do we live in?

The real question that I continue to face is, am I ready to homeschool him full time? Am I able? Am I qualified? Will I ruin his life?

Can I do it?

hmmm and more importantly- Don't you find it AMAZING that in 5 minutes of listening to a "disabled" child; he was able to tell me what the problems are?

An Ode to my son's teacher

WHAT my son's teacher does....an ode to Ms. Debbie.

My son's teacher wakes up each day to go to work, just like you and I.
my son's teacher gets her two children off to school, just like you and I.
like some of you, she is a single parent and does this on her own.

my son's teacher gets to school earlier than other teachers,
because my son and his friends have to get to school before the rest of the kids.
some of them can't handle big buses.
some of them can't handle lots of kids, bells, and teachers directions in the hall.
my son is one of them.

my son's teacher has a schedule to follow,
scratch that.
my son's teacher has 5 schedules to follow
because each child is in a different grade,
has a different IEP,
has a different set of educational needs.

my son's teacher has two paraprofessionals.
so she has to know their schedules,
lunch times, break times and needs.

my son's teacher has a lesson to teach.
scratch that.
my son's teacher has 5 lessons to teach.
because, well, you know, there are 5 different kids in her class.

my son's teacher has LEGAL, law binding, I E Ps to follow
5 of them.
and I can hardly understand the implementation expectations of 1.

my son's teacher has BOARD OF ED requirements to meet.
hey guess what, some of her kids aren't meeting state standards.
can you believe it?
a non verbal child with autism can't read at grade level,
and that is a bad thing according to statistics.

my son's teacher has parent teacher conferences.
scratch that.
she has conferences plus weekly meetings with parents,
plus support groups,
plus communication folders,
behavior phone calls,
PPTs, annual, bi annual and in between.

my son's teacher can plan during "specials"
scratch that.
each child goes to a special with their "regular grade"
so someone is always in class.

my son's teacher can plan during "lunch"
scratch that.
my son's teacher sits with a child or two who
can't eat in the cafetaria and teaches them
appropriate behavioral skills for dining.

my son's teacher loves to teach.
over and over and over and over.
much like groundhog day for the elmentary kid.
because kids like my son, have to learn things
over and over and over and over.

my son's teacher uses a behavior modification program.
scratch that.
yeah, she has 5 different ones.
scratch that,
the clinicians have just decided to change the program.
scratch that.
they've changed it again.
scratch that.
they gonna change it every month to keep it fresh.

my son's teacher loves the hugs she gets.
scratch that.
if she is giving a therapeutic hug it is because my son
is standing on a table
kicking her
or throwing chairs across the room

my son's teacher gets a break.
scratch that.
there is a time out room when my son needs a break.

my son's teacher gets out early because our children are on
modified programs.
scratch that.
she attends meetings all afternoon, every day, while my son is
riding the bus home.

my son's teacher loves to talk on the phone.
she must.
she has to call parents almost daily.

my son's teacher gets sworn at with no apparent
"antecendent"....yeah, that's the term for what
triggers a behavior.

My son's teacher deserves whatever the school district pays her.
whatever days off she can take to sleep.
whatever medical benefits her family can have.
whatever vacation days she needs.

because I need her.

and like my son will tell her, if he is having a good day,

"Miss Debbie, you are the Best teacher in the whole world"

and frankly, she is not the first one, nor the only one.


Yours,

the mother of the most incredible and wonderful boy.

on loosing my mind.....

today i came close, really close to loosing my mind.

it all started.......well, honestly sometime over the past few months.

we are on a hamster wheel, turning and turning, running to get there...

but where?

there was a goal, I am sure of it.

The goal is to get everyone in this family in their places with bright sunshiny faces.

That means people to work, in school, in therapy....and on time.

and the dryer broke.

and one car died.

so we run to the laundry mat with loads of wet clothes...

and we run to all the therapy appointments, meetings, trainings and field trips with one vehicle.

and my sister's husband is sick, very sick.

and she is loosing her house.

soon.

with 4 kids to feed.

so we run. to appointments. to therapy. to school. to work. and wake up each day to do it all over again.

my one year old now needs occupational therapy. it's an eating issue. one similar to Caleb but yet very different.

and my teenagers car died. sunday. he commutes to college.

so today I wake up after working an added shift last night, hoping the money will pay for a new dryer or a car battery. oh, did I add that the new car has a battery that periodically doesn't work?

at 6:30 a.m. my 8 year old woke up screaming and holding his ear...not a good sign.

which woke up my 1 year old screaming "ba ba" wanting to nurse to make up for me being gone last night.

which woke up my 5 year old who never wakes up well if it is too early. so she starting crying, this ear peircing wine.

so I forced myself to get up. get the lunches made. get the clean clothes on. find the homework folders. before the bus can come.

but my 8 year old held his ear, curled up on the couch and peed on it.

so I called his school and called the doctor so he could be seen...squeezed in between dropping my teenager off at college and getting home before the kindergarten bus.

then I left to drop my husband off at work (one car, remember) and beg my sister to come with me to the baby's occupational therapy because there was no way I could handle the 8 year old (he has autism) with the baby who screams through his therapy appointment; which sets off an auditory sensitive 8 year old;

who already peed on my couch so there is no self control today.

they decide to hang out at her house instead. my one year old screams as we leave because it isn't fair; he wants to stay too.

arriving a little early to therapy, I swing by the party store to buy my daughters yellow gloves and crown for her "Belle" costume because there is a Halloween party; tomorrow.

seriously. and I have to go because I have to return a cage that a women lent me when I bought guinea hens from her last week.

because the pamper boxes I brought to her home just wouldn't hold the pecking hens.

so I pull into the party shop parking lot...and the baby fell asleep.

So I drive to therapy thinking I'll catch this store after therapy.

there were no parking spaces at therapy.
none.
and we came to this facility 3 years ago for easier access to the office.

but a factory of some kind moved in next door and takes all the spaces. so I parked illegally in one of the handicapped spaces; after asking permission.

so while my baby is in therapy by himself; I meet a woman with a four month old baby that is bigger than my 13 month old. and it makes me worry more.

and I rest for a half hour thinking, wow, he isn't crying this time....this is progress.

then the therapest opens a sound proof door (can I buy one for my home?)and he is screaming for his life. he is out of breath as he sees me. she hands me an eval. it's not good. he needs therapy two times a week. yeah, in the middle of my week filled with vision therapy, dog therapy, occupational therapy and speech therapy for my 8 year old. yeah right. but I sign him up because, well, I want early intervention, right?

so I go back to the party store and they don't have yellow gloves.....so I buy white ones.

oh well Belle, get a life.

I run next door to Aldi's to grab a few food items to get through tonight until I can shop tomorrow. I fill my basket, get to the register, and they can't take my debit card BECAUSE THERE IS A CRACK IN THE MAGNETIC STRIP...so I leave my groceries there and race home to get my oldest to get him to school before he is late.

when my sister calls.

Caleb peed his pants and needs a change of clothes.

So I race the teenager to his class, run to my sisters, change my son, feed him and race him to his doctor's appointment.

I get him into the car on time but the car won't start. (remember that quirky battery).

So my sister comes out to jump my car but I can't find my cables. husband tells me (thank god for cell phones) there on the floor in the front seat which I can't see them because it is a mess.

I jump the car but now my son wants to ride in auntie's car.

So I start counting to ten...and back again...and bribe and threaten...and we get to the pediatrician's office ten minutes after 2pm

to find out that the appointment is at 3.

Which means that my son who can't wait without spinning circles around everyone; has to wait.

and they run late anyway.

so at 3:15 I tell the nurse I will come back after I go catch the school bus for my kindergartner.... but the wonderful doctor hears me so she comes quick.

and he has an ear infection.

would ya think?

but she has a million other necessary questions about all his other evals.....yeah he is going through a ton more evals, MRI, catscans, sleep studies...but I can't talk...so I tell her I'll catch up with her in two weeks because he has an appointment with her to check HIS WEIGHT.

yeah, he weighs too much....

and the baby comes in around the same time because he weighs too little...

and I rush to the car,
and I race to beat the bus....
and I get one off the bus to nurse the other...
and plan dinner to find out things are missing (remember Aldi's?)

then it is time to pick up husband and go to pharmacy to get perscription.


I walk into CVS like I have for years. I walk to the "drop off" counter and the woman is not waiting on anyone. I try to hand her a script but she rudely tells me that she is busy.

A woman is asking another employee questions about items near me...this looks like it is going to take a while.

So I ask the first woman because I am confused, if I can drop off the script so I can shop.

This rude woman says something like "YEAH< but I am with a customer so you can do that after you wait your turn!"

which is when I lost my mind.

"NO THANKS I'LL GO SOMEWHERE ELSE WHERE THEY WANT MY MONEY AND BUSINESS AND DON'T HAVE FREAKING BAD ATTITUDE" and stormed out of CVS and into the parking lot and into the car, shaking, and crying...and telling my husband we can NEVER GO IN THAT STORE AGAIN.

because I am sick of being yelled at; told NO; kicked; things thrown at my head...oh that's the autism.....

I drive to STOP and SHOP. Drop of the script. Buy a bag of Baby Ruths and walk around eating them while trying to figure out what I need.

THEY REMODELED THE FREAKING STORE so I can't find anything I need.

so I buy important stuff like ice cream, whip cream, bananas and things I haven't bought in a really long time....and remember to get the chicken noodle soup, gingerale and saltines for my sick kids.

I get in line, OK has anyone tried to pay for groceries these days? there are like double the amount of self help lines than those with an employee!

I figure if I am going to ring up my own groceries, they ought to pay me the $7.00 an hour while I am doing it that they pay their other employees who do the same thing.

plus i need someone to type in my card as a credit, because the strip is broke.

As my groceries are being rung up; I recognize a woman in line behind me. My obgyn who was proud of me when I lost weight by eating healthy....and she has a ton of healthy food...

I frantically start bagging the candybars, ice cream and canned soup to hide what I am feeding my family...evil processed garbage...

when a woman from the PTA walks by....

and I realize that I am shoving groceries into plastic bags; lots of them.

Oh, I didn't tell you that I am pushing the school to go "green" and have started a committee for this venture....complete with trying to get a composter for the school and chairing the committee for FAMILY FUN DAY in January; a crafting workshop using clean garbage.

seriously.

and here I am; green queen; shoving processed chemical junk into plastic bags that are killing dolphins in the pacific ocean.

crap. Maybe I'll tell them I had no plastic in my own home to bring in and had to buy junk food in plastic garbage to help teach a lesson to those who are ruining our planet with their garbage!

Ha! Yeah, that's the ticket. Do ya think they'll believe it?

Oh well.

you win some days; you loose others.

thanks for listening....but I got to go pick up my son from college....

maybe I catch your comments on my rebound when I come back tonight to eat the banana split.

got any creme de mint? rum? vodka? anything?

You know, they run classes at some therapy centers for parents to learn how to take care of themselves in the midst of autism.... a group once a week to listen to other mother's vent.

What the hell do I need that stress for? I'll come home to my house trashed!

Why doesn't someone just get my insurance company to pay for a maid twice a week...then I could de stress!

but you know I complain but I wouldn't trade my kids for anything- I love them all and am blessed to have them in my life...so don't misunderstand me; it was just a bad day.

WatchHill Rhode Island!

We visit WatchHill because they have flying horses.




The kids love catching the rings and trying to get the golden ring. For those who have never seen this, if you catch the "golden ring"; you win a free ride!

For me it's about memories. . . .

of a place where I visited when I was growing up:

http://www.mvol.com/virtualtours/%20Activities%20&%20Points%20of%20Interest/39/465/enter/

Memories from childhood of catching the golden ring!

Memories of great grandparents, grandparents, aunts and uncles riding the flying horses; laughing together. Sounds return to me as I watch my children go round and round.



sounds of music booming from the old organ,



cranks from the rakkitty carosel going around;
clangs from the rings as we tossed them into the side box.

In the air always was heard the chatter from seagulls.

Sun warmth kissing our faces and smells from beachplum roses, lilacs, hydragnas entwined with saltwater welcoming us home to Martha's Vineyard.

We don't get to Martha's Vineyard as often as we did. Ferry's aren't as easy to get; now you need reservations well in advanced. Once upon a time we just simply drove to WoodsHole and waited for the next ferry. The cost now is over a hundred dollars just to cross the ocean. Finding a place to stay when you have 4 children isn't fun either. I would overcome all this and still go every summer if my son didn't suffer from severe sensory issues. For him, driving in a car means he gets very sick. The shortest route to vacation is the best for all.

From this obstacle we have been given the joy of discovering Rhode Island.



What do you say guys, is this place fun or what?

"Sugar makes him hyper"

Do you remember hearing that when we were kids?

My mother would say that about my brother. "SUGAR MAKES HIM HYPER."

I thought I saw the same thing with my sons. I could tell if he got his hands on a chocolate bar. They became wild, hyper and out of control.

Until recently, I thought Sugar was the evil one.

I want to share with you all, another evil thing in our food.

(as if we don't have enough to worry about already).

I introduce to you,

VANILLIN.

google it, you'll find that the real vanilla, from the vanilla bean, is not able to grow at the rate we consume it.

you'll read that today there is an artificial vanillin that is a chemical compound created with petrochemicals. You've read that right, chemicals we use in our car.

you'll find a hazardous material listing with Environmental Health & Safety.


I decided to try an experiment with vanillin. I removed it from my son's diet. I bought "sundrops"; a "M&M" alternative at the healthfood store. It still has chocolate, it still has sugar but the artificial vanillin is not used.

Then I gave him a bag of real M&Ms....and WOW.

He spun circles, his language decreased in clarity, he was hyper and extremely ADD-like.

The problem? Vanillin is not a food ingredient so it can "hide" in the foods we buy.

So we wonder why neurological issues are prevelant in our society- things like an epidemic of autism. We wonder why we are an obese society with diseases killing us that are all diet related.

It isn't all because we are gluttons who live at McDonalds.

We are also victims of corporate greed that makes profit over deception.

No one told me as a child that when I bit into an all american Hershy bar that I was also eating a chemical with a hazardous waste listing....

did they tell you?

It doesn't take a rocket scientist to figure out that offspring of any animal fed this stuff is going to have genetic problems.....

So what do we do about it? In my younger days I would have tried to organize a group of people to fight it, would have at least got on a loud pedastal to shout it out for all to hear.

today?

I am going to go eat a Hershy bar. That at least, will make me feel good for the next 20 minutes.

(and p.s. NO this does not get sugar off the hook; he's no good either)

Micro- WHAT?

MICRO CEPHALY.

no lie. microcephaly. ever hear of it? how about significant microcephaly. relative microcelphaly. developmental delay. sensory integration disorder. pervasive developmental delay not otherwise specified......and (drum roll please,) last but not least.........


"we don't know." "he doesn't fit into any box so we would like him EVALUATED AGAIN BY A PSYCHIATRIST"
?????????????????????????????????????????

I am talking about my beautiful sweet loving son, Caleb. It all started one day when way back I took him to a well "infant" check up.

The nurse measured his head. The nurse measured his head again. She looked at the file and measured it again. She said, "humph" and measured his head AGAIN.


That was the begining of hell.

The doctor came in. She looked at the charts and measured his head. She looked at the charts and measured his head again. She said, "huh. ok we are just going to watch it".

WATCH WHAT?

His head circumference had not grown from 6 months to 9 months.

What sane doctor is going to think that a mother of a 6 month old baby..........who tried FOREVER to have this 6 month old answer to prayer...........and lost a baby early in a pregancy prior to having this 6 month old baby..............to "WAIT AND SEE" without worrying?

So I obsessed. I didn't have internet then which is a good thing, but I obsessed. My son's head didn't grow. I prayed with the church women and gave it to God- HE would know how to deal with this and make everything all right.

Then I walked into the 12 month appointment and well, the nurse measured his head. She looked at the chart and measured his head again..........and said, "oh"; looked perplexed; looked at the chart and measured his head again.

I knew this couldn't be good.

The doctor came in and measured his head. She looked at the chart and.........measured his head again. She said, "ok there is probably nothing to be alarmed about but we are going to send him for x-rays just to rule out Craniosynostosis."

Cranio- what? I got a social work degree not a medical one.

OK- long story short; my son's head stopped growing at age 6 months. We went to X-ray and his skull bones were not fused together to early (craniosynostosis). What I thought was good news turned out to be worse; his brain was not growing.

We then took him to Connecticut Children's Medical Center for an MRI. He was at the age where he might respond to "silly juice" which is apparently safer than anesthesia.

S I L L Y J U I C E

is not silly.


He became insane. He fell asleep in my arms and a demon took over. He started thrashing, screaming, throwing his body, but he could not open his eyes no matter how I tried to wake him. I was afraid he would kill himself on the hosptial bed. My husand and I had to hold him together while he thrashed, twisted and screamed in agony. 20 minutes went by. He finally went out. I cried.

The nurse walked in. She said when the kids are older they sometimes react like that.

Thankyou very much BITCH for not preparing me to keep my kid safe.

That is what I thought. I wouldnt' have said that outloud because I was at the time "a good christian wife and mother". Of course no one from our church was with us to pray, give support or love us........but back in those days I didn't think of that.

I had read the list of tests that the MRI and bloodwork was going to look for.

LISSENCEPHALY was one of them. I got my friend to look it up online. Not good. Lissencephaly meant severe retardation- smooth brain- and death at around age 2. So I got to freak myself out for the week before the MRI. Visions of funerals tormented me at night.

The results came back. NO lissencephaly. I thanked GOD. No abnormalities.... I thanked God. But a severly microcephalic head. VERY SMALL.

THE MEDICAL COMMUNITY HAD NO CLUE WHY.

So we visited more doctors for evaluations........the eye doctor looked behind his eyes to see any abnormalities- there were none. The ear doctors ran tests........he appeared normal for his age. The geneticists tested his blood and measured all his body parts.....she could find no "SYNDROME".

all was well?

no. the head refused to grow. At age 3 he had the head circumference 50%tile of a 6 month old baby.

I prayed for his head to grow. I fed him lots of fat- I mean brain is mostly fat, right? I let him drink half and half- they say the fat in milk helps the brain grow.......and I put him on every prayer chain, and held him tight at night.

He developed on age appropriateness.

Then my world started to change.

Caleb started to spin.

and spin and spin and spin.........he could spin for over an hour and not get dizzy.

He could hear things that no normal person could hear and covered his ears and hid.

He would line up all my spices, open the tops.........and they became "GUYS" complete with story lines.

He would watch tv shows once and repeat it back to me VERBATIM.

He was echolaic...

He was toliet trained if naked; but could never feel the urge when dressed.

I worked with AUTISTIC kids that were also mentally delayed. I kept thinking- he's like AUSTIC but smart>?

So the doctor sent us for an autistic evalution because unknown to me- autism is a SPECTRUM. You can be smart and be autistic- in fact you can be genius and be autistic.

We went back to the geneticist who drew blood again and measured him every where.

A laughing moment was when she measured the space between his nipples. My four year old looked concerned for her. When she left the room, he turned to me and said, "MOM, the doctor just measured my nipples" and cracked up in laughter. I joined him because it was funny. Who is the weird one here???

The diagnosing clinician felt that she couldn't tell if he was autistic because the "social" piece was unknown........so he entered an early intervention preschool in town with a speech and language delay.

Their findings with the psychiatrist? GLOBAL DEVELOPMENTAL DELAYS AND SENSORY INTEGRATION DISORDER.

Want to hear something funny? He was no longer MICROCEPHALIC. HIS HEAD GREW. So now the label relative microcephaly.......meaning he once was.

We entered the world of occupational therapy and sensory diets...........

and Caleb behaved like a charm for preschool so he went on to kindergarten.

Kindergarten. He couldn't ride the bus, the noise was too loud and hurt his supersonic ears.

He couldn't stay for full day- it was just- too much.

We modified his program; half day kindergarten and he completed the year. He had to repeat kindergarten because he was only able to stay half day.

Kindergarten year 2 was horrible. He couldn't handle full day, he couldn't handle cafetaria or bus.........anything noisy.

He had no proactive sensory diet so he developed "BEHAVIORS".

Running out of the classroom when the noise was too much;

taking off shoes and walking through puddles on the playground;

hidding under the teacher's desk and removing his shirt;

yelling to teachers "fu#kitall"

are apparently inappropriate ways to behave in kindergarten. :)

They sent him home on homebound education.

I told them to keep their homebound educator, I could teach kindergarten and spare the child a "change". (did I say he doesn't take too well to new things?)

I despised the program that they were going to place him in, got a private evaluation.......and his new labels became:

PDD-NOS.

The new clinician thought I was wonderful. She thought that my skill and training was meeting

his needs. She thought the only thing pathological in his life was school, have I considered homeschooling? She labeled him on the spectrum- said he was typical aspergers kid but had a speech delay and no real OCD so.......he really didn't fit into that box.

PDD-NOS.

It means that you are autistic but not typical. You don't have the right problems to get a real name of your autism. You are not aspergers or autistic or high functioning autistic- you are pdd nos.

So I homeschooled him.

He stabalized quickly. He learned. He thrived. He laughed. He loved. He grew.

I got pregnant.

I got tired.

I got concerned that since he was doing so well, since he was behaving and thriving- could he return to REGULAR school with a para for his autism?

He entered a 2 hour diagnostic program with a wonderful teacher. He attends maybe 3 days a week. I homeschool him for his educational learning, he gets peer relationships, social skills and the practice of getting up every morning and getting somewhere.

They just completed his evaluations. Their findings?

He has a low probability of being autistic. He is AT grade level for IQ function. He has issues that don't fit into ANY of their boxes. They see some adhd- which is so NOT true.......

They are paying for a consult with a pyschiatrist to do more evaluations..........

WTF?

Is this to be a life time of evaluations for this child?

When does he get to be a little boy?

I am tired of therapies, tired of behavior programs, sticker charts and communication logs.......tired of evaluations that are completed by filling in little bubbles that are subjective and outdated..............tired tired tired.

SO HE DOESN'T FIT INTO YOUR BOX.

Make a new box.

Leave us alone. that is how i feel about this at this very moment. Leave my little boy alone and let him PLAY.

101 COUCHES

some times when I am alone, I dream of owning a beautiful couch.....

See, no one tells you the hidden costs of autism. The incredible prices of therapy that aren't covered by insurance; the diets; the supplements; the swings- these things people hear about when they read about the cost of autism.

I am here to tell you about one of the hidden costs....

we are on our 7th couch since our son was born. He turns 8 next week- and we need a new couch AGAIN.

Does that make it a couch a year?

I no longer go to real furniture stores to look for a couch. We can't afford the expensive ones; it will be ruined in a few months anyway.

See, Autism HATES couches.

Autism causes kids to soil their pants at the least expected moments.....so all of our couches are peed on or worse...

Autism causes kids to make couches fall apart.....

I really haven't figured out HOW; it just happens.

I think it is an autistic fairy that slips into the house at night while we are sleeping- it takes cushions and removes the slip covers....

it hides slip covers in weird places.....

it takes the cushions and throws them outdoors to get rained on....

I know that some of you who haven't lived with autism would read this post and say, "HOW?"

"SURELY if someone was watching this child better, he wouldn't ruin the couches!"

I would answer to you, "you don't know autism"

See, it is not my child who ruins the couches, it is autism.....it lurks its head out to drive me insane.

After a few days of severe autistic activity; parents can become brain numb...so letting a child eating on the couch while perched on the back, hanging upside down...becomes OK.

What was once totally unacceptable behavior becomes.....

not so bad.


Seriously.

When the oppositonality; the physical thrasing; the soiled clothes; the phone calls from the school to come and get your child while you have a baby who needs to be nursed in tow; the pulling off the clothes; the spinning in circles while screaming a high pitch yell.........all comes together like a tidal wave over a period of a few days; you need rest.

And rest often means that it is ok to hang on the couch- to paint one's body on the couch with shampoo and toothpaste....or god knows what else. You pick your battles because if you don't you loose sight of what is important. You become a screaming banshee instead of a loving mother.

I figure the day will come when I can own a beautiful couch....

for now, I'll dream of them inventing one made out of cement but feels soft ...

indestructable but still a place to rest.....

a girl can dream, right?

I'll share with you photos of our latest victim; complete with a missing cushion.....

if you promise not to judge me for being a bad parent; see, I LOVE my child, it's the autism that gets me drained.....and let's me allow him to destroy our couches...I mean, they're only objects; He mean so much more to me than they do.

In my world; he's not autistic; HE'S CALEB.....who has autism.......and who on most days is a wonderful, bright, happy little boy.


You know, come to think of it, by the time we CAN have a beautiful couch, I probably will want these ones with the memories engraved into them....

battle wounds.......or journal entries.....

it's all in how you look at it!