Hannah's last day of preschool....forever.

I am feeling so bummed out about my computer- I am having difficulties uploading photos- so I am anxious about some things I really want to post....

I got these photos though- so let me share a bittersweet moment.

Friday was Hannah's last day of preschool.

She has been attending the preschool for 2 1/2 years now. She loves this school, has been loved on and cared for by the staff.

Daddy works where she attends and at one point had his office door across the hall from her classroom door.

Hannah tells me that daddy can start working at the local elementary school next year so that they can still be close- and he won't miss her.

Hannah woke up yesterday crying. She really will miss her teachers- and so will I. It was a wonderful experience to leave my daughter in the hands of loving, devoted staff. So refreshing when we've come across some interesting people through the years.

I celebrate the life milestone- my daughter was successful in preschool. She is an advanced learner I am told- already computing addition, subtraction and basic math facts. She has long ago mastered writing her names and those of the people she loves. She is socially outgoing, well adjusted and interested in so many things.

and inside I cry because in the midst of her milestone is the truth that she is growing up. These wonderful early years are ending for her. I already miss them just knowing how quickly they flee.... and yet, I look forward to the maturing relationship that we will share as she grows.

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.

10 years of Marriage . . . .

and we celebrated it here.....Nordic Lodge.

http://www.nordiclodge.com

An all you can eat lobster buffet.

I thought I'd be able to eat at least 10 lobsters or as my relatives might say, "lobstahs".

I am ashamed to admit, I got four but didn't eat four lobsters.

I ate scallops....boiled, fried, wrapped in bacon...all kinds of scallops. I loved scallops- before last night.

I will probably NEVER eat another scallop or lobstah again in my whole life.

Only once before did I get a lobstah that I couldn't eat- I traveled west to St. Louis with a foster mother. We went out to eat and ordered lobstah. Apparently in the land logged areas there is a different kind of lobstah- rock lobster- it looks like a huge crayfish and tastes akin to rope. We returned ours. The waittress was WONDERFUL in not charging us as they thought our "accents" clearly indicated that we had no idea that there would be a different lobster in the midwest then what we eat in New England.

So at age 15; I learned that us new englanders sound distinctly different than the rest of our country- and that NOT ALL LOBSTERS are LOBSTAHS.

growing up I have fond memories of eating lobsters at my great grandmother's home in Vineyard Haven Massachussetts... on Martha's Vineyard, an island off of Cape Cod.

My aunt Judy's husband once brought a huge lobstah to her house. He was a fisherman then and we ate lobstah until we were full.

Never sick of lobstah though until last night.

I ramble.....the resturant was awesome.

We drove through the woods of Rhode Island down winding trails. Little elfs were on boxes in trees as we approached the Nordic Lodge. Some trees had faces on them. I saw a mother load of fiddleheads and made my husband stop so I could pick them. My brother in law loves fiddleheads and I wanted to bring some home to him.

When you pull into the resturant parking lot, there is a lake on the right with a lighted water fountain. Music is piped through outside speakers. They have horses and emus. To your left is a large lake.

The staff were so friendly, I felt like I had come "home".

The food was amazing. They had everything from lobstahs to prime rib.....chocolate covered cherries, strawberries...and vanilla chocolate dipped strawberries.

After dinner we went to the beaches in Charleston.

We love Rhode Island....

we are thinking that maybe for the next 10 years we can start planning to purchase a second home out that way....

The best part of the night was being with my best friend and lover- the man that has spent the last ten years of his life being my better half. I am the one with dreams and creations- he stablizes those and makes them become real.

who would have thought 10 years ago that we would be celebrating this day- with 3 more incredible children; a home; a garden full of butterflies and birds......and the hope of 10 more years to come.

May 16, 1998 was the day I married my prince charming.

Moments of beauty......

This bird is like the one that came to visit our home today.....

What a blessing it is to see something so beautiful and pretty stop by, especially when things feel rough.

Our butterfly garden is just about finished and already yesterday we have had many visitors- yellow and black butterflies, a black one with blue spots on one side and pink on the other, a small orange one similar to the monarch but not quite....and most importantly; the hummingbird is coming every day.

The blue birds that we long to see stay at bay. Yesterday a family of about 6 flew up my road, one at a time.

The other day one perched on our power lines and looked down.

As far as I can tell, they haven't dared to eat our food yet.

C'mon little blue birds, come and eat...

PLEASE....

TAGGED?

BLOGGER has been giving me a headache about uploading pictures this weekend- got somegood things to share- so while I wait, I'll try this meme....


Shaun http://www.blogger.com/profile/02459146307668300057 tagged me for this meme (could some one tell me how to say that?) so here is my response.
It's called " The six word memoir" any way here are the rules:

1. Write the title to your own memoir using 6 words.
2. Post it on your blog.
3. Link to the person that tagged you.
4. Tag five more blogs.

Hmm.. Six words. ok here goes..

"she did it all for love"

never did this before- now I have to find people to tag.

I tag- JAYNE - you're it!

and now I tag- TYSDADDY-

MEG, Sherry, and what happens if I don't find five?

ok, I tagged poor Mae because I think her's will be funny!

sorry guys........

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!

MAY SYNCHRO BLOG

Glenn Hagar is doing another synchroblog.


I have decided to answer his questions - each one as a separate blog post.

Please, if you are reading this synchroblog- scroll down to the first part and read it backwards.

I am new at blogging- please forgive me for it being backwards.

As other's post their blog, I'll list the links here as well.

thanks for listening.


http://glennhager.wordpress.com/2008/04/28/your-turn-may-synchroblog/

Here are the other blogs:

http://assembling.blogspot.com/2008/05/you-are-here.html

Part 4; WHAT ARE YOU DREAMING ABOUT?

I am dreaming about children.

I am dreaming about loving them to healing....taking in children who need a mother.

I am dreaming about having my home bursting with noises from feet pattering down the hallway...and fightings....and singing...and laughter.

I am dreaming about looking into a child's eyes with my own love so that they can look up; recieve the love and begin healing.

I dream of wiping away their tears, quieting their nightmares and guiding them to HOPE again.

I dream of writing stories....

I dream of days spent at the beach, a beautiful garden, and of knowing all the names of the birds that come to our feeders.....

I dream of the repairs of our house being finished.

I dream of more time to ourselves....

I dream of opening a daycare for children with special needs that have no where that will take them.....

I dream of running a summer camp for those same children....with animals and gardens....

I dream of building a retreat center- NOT FOR MORE TEACHING- but a place of rest where people can lay down their heads, breathe, heal, and rest.......

I dream of feeding people.

I dream of banners........I miss dancing in worship with beautiful banners.

I dream of helping younger married couples get through the rough spots..

I dream of being able to trust again and have new friendships.

Part 3; WHAT ARE YOU LEARNING?

That God is bigger, better and oh so much wiser and loving than what the church tells you!

That life is short, spend it with the people that you love.

That things are almost never black and white

That people NEED people not a sermon.

That people WANT real friends, not to be ministered to.

That the bible DOESN'T contradict naturopathic things.

That Caleb apparently "picked" me to be his mother before he was born because I was the best there is. (yeah, he told me that last week)

That sometimes "church people" MISS IT.

Let me tell you a story about that.....

there is a boy at my work who is developmentally delayed (mentally retarded). He is the sweetest boy that you could meet. He is funny, smiles from ear to ear always trys his best to "do the right thing". This boy touches my heart. I LOVE to ask him when I come to work, "Michael, HOW ARE YOU?" just to hear his voice, to see his smile as he says, "good, good jane, and how was your week...".

sweetness, innocence, peace and joy are just some of the gifts this kid brings.

On Saturday night a fundie church comes to our residential treatment facility to have "church".

Michael went to church for the first time. He came back to the unit, HAPPY as can be because he caught the "HOLY GHOST". He said, "I AM CHANGED. I AM NOT THE OLD MICHAEL ANYMORE- NOPE HE IS GONE- I AM GOOD; they prayed over me and I found JESUS"....

Now, many will read that and say, "PRAISE GOD"

Me?

I have learned some things.....

those people came with good intentions, but I believe that they were very wrong.

Maybe they needed to become a new person, maybe they needed CHRIST to change their lives..

but Michael well, I have a hunch that God LOVED HIM JUST THE WAY HE WAS.

badness? not in this child.

I told him that Jesus loved the old Michael too....

He argued, "no, oh no Jane, they told me, they told me that I had to become a new person so I could go to Heaven"

YUP. They told a developmentally disabled sweetheart a message that I think wasn't for him.

Do I think he still needs Jesus....well, YES of course I do.

But this child was loved by God just the way that he was...if ever there was a human that didn't need to be "Transformed"; this child would be that person.

See, I think God is so much bigger, smarter, and more loving than what the church tells us....

that is what I am learning.


(ps Michael is not his real name to protect his identity.)

Part 2: WHAT ARE YOU DOING?

I am spending time with my family- time that I didn't have because every night of the week I had to attend a church meeting of some kind.....

I am watching the birds.....

I am gardening.....

I am growing frogs from eggs then tadpoles.....

I am watching my daughter's dance recital.....

I am helping my oldest son through final exams.....

I am busy being a sister to my lovely sister and an aunt to her kids....

I am at work in a job that I love what I do......

I am watching my Caleb pretend to be batman.....

I am going to NORDIC LODGE for my anniversary dinner (YEAH!)
http://www.nordiclodge.com/

Part 1; HOW ARE YOU DOING?

honestly?

ok in some areas, not so good in others.

What's got me down?

My brother in law is sick. I'm told that he doesnt have much longer to live. This means that my little sister may be relocating to Florida for his treatment. I am close to my sister and our children have grown up together.

I am trying not to grieve the loss before the loss is here and spending as much time with them as I can.

Because of this, I have found it difficult to blog about Hannah's Haven and my experiences with spiritual abuse.

I worry about how he is in pain, how is he going to get through this, is he going to get through this.......it doesn't sound like he is......so then how is my little sister going to support and care for 4 young children?

Otherwise?

tired. I am tired. I have returned to work part time after being out for maternity leave. I am nursing a 7 month old little boy on demand... I am transitioning my 4 year old daughter into kindergarten for the fall....I am still dealing with autism issues with my wonderful 7 year old son.......and am currently living a week of stress as my 20 year old who commutes to college is in the middle of final exams.

and it is May.

that means I have 2 birthday parties to plan (caleb turns 8 and Hannah 5); two graduation parties to attend; and a 10 year wedding anniversary to my loving husband to celebrate!

ah but you wanted to know how I was doing in relationship to God or the exodus from our church group.

I haven't had time to ponder it lately........but you have given me a moment to.

How am I doing?

God, how am I doing?

I wish He would respond. I wish I could hear His voice audibly. Then I would know for sure that I am walking in His path for my life and in the palm of His hands; how secure I would feel.

He doesn't.

SO I wonder WHY my brother in law is sick so young.......

I wonder WHY my little boy has autism........

I wonder WHY the kids I work with (I work in residential treatment center for our child welfare system) have endured such wicked and tormentative childhoods.......

I wonder WHY Hannah's Haven isn't where I want it to be.

I wonder WHY I still struggle with the same sins as I did yesterday.

I wonder WHY death exists.

and yet I am also thankful.....

thankful for an incredibly loving husband who has been my best friend and the stabilizing rock in my life.....and we celebrate 10 years of marriage this May 16th.

thankful for each of my children.....my wonderful 20 year old son that loves his family so much that he commutes to college and helps us around the house. for my 7 year old whose perspective on life is so profound that each day comes to me with a new learning experience. for my 4 year old who wants to dance and dance and dance and dance.... and for my 7 month old who loves to provoke us into laughter by doing hammer head (waving his head back and forth). thankful for their health.

thankful that my husband and I have really good, stable jobs with great medical insurance.

thankful for our home.

thankful that we are not "caught up" in the busy-ness addiction of our old church.


That is how I am doing........

thanks for asking.