The Peanut Festival

2011-04-25T14:20:00.001-07:00

The poem is by W. H. Auden. Like many of his other works, it is known by
its first line, "Stop All the Clocks"; it is also known as "Funeral Blues."

Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.

Let aeroplanes circle moaning overhead
Scribbling on the sky the message He is Dead,
Put crepe bows round the white necks of the public doves,
Let the traffic policemen wear black cotton gloves.

He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last forever; I was wrong.

The stars are not wanted now; put out every one:
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the woods:
For nothing now can ever come to any good.

I'll get you my pretty....

2010-04-18T06:58:00.000-07:00

I had some righteous indignation yesterday, coming from both ways. I went with a friend of mine to a local craft bazaar; we took our 2 daughters with us (keeping in mind that my little sunshine has her issues). We had barely gotten in the door when this old woman knelt down in front of my girl and grabbed her hand and said, "Come here honey I want to talk to you." WTH??
Elle(my daughter), of course, dived behind me to hide from the creepy old stranger lady. I casually stepped in front of her because OLD BAT WAS STEPPING AROUND ME TO GET HER. Again, WTH? And I said, "Can I help you?" instead of slapping her. To which she replied, "I noticed your daughter was looking at Vera. (To those of you who do not know Vera, she is an older lady with a pretty serious skin condition; she is covered in large moles/bumps all over her arms and face.) "I was just going to tell her that God made us all different and that He loves all of us, even Vera. She doesn't have to be scared of her." And I replied, "I'll talk to her about it, Thank you." We walked around this bat and I leaned down to Elle and told her to not stare, it's not polite. Left it at that. Seethed inside because I wanted to say:
1. My daughter is well aware that God made us all different. Thank you very much, she deals with that every day.
2. You've ruined our fun day out because you are a nosy old bitch. Invading a child's space like that, what good could possibly come of it? You've definitely done more harm than good today, with your "holier than thou" attitude.
3. Vera is a mature, grown woman who has had that condition her entire life. She surely can handle a small child staring. She'd probably rather that than YOU running your mouth around telling people all about it.
4. My daughter has a small, set amount of calm points that she can use. Just walking in the crowded building with all it's crazy noises used probably half of them, and you jumping in front of her like that used most of the rest. So now, all she can think of is getting out of here, instead of being excited to pick out her new hairbow like she has talked about all morning. I should slap you right in the face for doing that to her, you bully.

Instead, I dropped it. I pushed it out of mind and got Elle back under control. We looked at the booths. We avoided old bat, and Vera. She calmed back down; we picked out several hairbows, she wore her favorite home. She picked out new shoes, helped me find the perfect necklace. She wanted to get her nails painted, but just couldn't find the energy to overcome the anxiety of a stranger touching her hands was creating (she might have been able to without old bat getting in her face, but maybe not). We came, we saw, we left. When we got home, Elle asked me about "the lady with all the bumps on her body". She thought she was a witch, so we talked about it softly and calmly.
What's done is done. The only one even thinking about it today is me.

The pendulum swings

2010-02-16T20:02:00.000-08:00

One year, One week, one day, one hour.
It's astounding how much perspective can shift in such a little time.
4 years ago, it started officially. The search for help. The fear of what we would find out, the fear of what could be waiting for us.
3 years ago, I had a plan of attack, but no real answers. Life was calmer, a lull in the storm.
2 years ago, I got the answer I didn't want. Autism. After that intial flurry of testings, meetings, and planning we started to see slow progress, a lessening of all the anxiety and tantrums, a gradual acquiring of awareness. A shift from living in crisis mode to family life again.
1 year ago, wow. An avalanche. Changes for the better. Still some bad days, but I could breathe. I could hope. Our family could make plans. That may not sound like much to someone on the outside, but it was heaven to me to know I could get out of the house and do family things without a "sensory pack" and an emergency back-up plan. Most days.
6 months ago, one month ago. The difference is night and day. This year has been good for my baby girl. I hoped it would be. She's on track, she's holding her own in a regular Pre-K classroom, with no supports other than OT and speech once a week. And Mom for a teacher. She knows 21 letters, she can count to 30, she can ask for help, she will play with friends-when she wants to. She can not get her shoes on the right feet.
She can paint, she can get sand on her hands, she can ignore the A/C running and the squeak of her crayon to listen to her teacher's directions. She still talks to herself all day long. She says please and thank you-when she wants to.
It was a good, good day today. Tomorrow may not be as great, but so far so good. *Fingers still crossed*

That door

2010-02-06T20:50:00.000-08:00

I just got sucker-punched. Again.
I don't know at what point in the "journey" of raising a child with special needs that you can have a little distance, a little perspective, see things from a point of view instead of from the heart. I watched the movie Temple Grandin tonight. Cried like a baby. Totally related with the mother-took her pain into my chest and mixed it in with my own. Absorbed it in. Re-opened old wounds and poured a little more lemon juice in the hole for old time's sake. Why do I do that to myself?

It's a bad place to live-that "what if" world of self-doubt, guilt and grief I discovered the day I went into labor 3 weeks early and delivered a child that struggled to breathe on her own. In the five years since then I've shut that door to that world, firmly. Repeatedly. Turned my back on it and embraced the "that's the breaks Jake" attitude of learning, helping and growing as a family. Such progress and pride, not just for the amazing steps my daughter has made. I am proud of myself too, dammit. There was a time when I lived in that bad place. And cried myself to sleep for months. And prayed incessantly for a cure, for a way out. And walked in a fog of sadness, railing that MY daughter would not be the smartest in her class or the sweetest girl or even not be the one everyone made fun of and called names. And yes, that was the most pathetic and disgustingly selfish time of my life, but also my darkest hour. To have my own child be one that I couldn't teach was my worst nightmare. I felt absolutely useless and helpless.
So, lots of time and work have closed that door to that bad place. But sometimes I still peek in. And I still hate it there, and it still takes my breath away and demoralizes me. So I slam it shut again and go on out in the world.
Focusing on what is helping, what comes next, how far we've came, and how happy my whole family is. Remembering the blessings and counting this journey as a blessing and an opportunity to help others understand. Those are the nails and locks on that damn door. I hate that door....

Do you see what I see?

2010-01-23T06:36:00.000-08:00

I read someone's blog who said that when she told her dad about his grandson having severe autism, she expected to see shock, upset, and denial. Instead, he took a deep breath, paused a moment and said "Well, he's still our Matt."

Acceptance is a wonderful, wonderful thing. Kids may remark on differences but as long as they can relate in some way, they accept. I am constantly amazed as I observe children shuffled from parent to parent, parent to grandparent- aunt - friend; for some this cycle never ends. Drugs, alcohol, abuse, neglect, poverty...when it is everyday, it is the accepted norm. Honestly, would you give a rip about your multiplication tables or your homework when your home life consisted of a constant string of "friends" of your parents coming in and out of the house while you were sent outside so they could use drugs? Would you care about homework if Mom forgot to feed you dinner because she was too busy getting her drink on to remember she had a child? Would you care about your parents at all if they had been arrested, jailed multiple times for child abuse, molestation?
If you are a child...yes, without a moment's hesitation.
Yes, my child has some delays. She struggles, she fails by normal standards sometimes, she will most likely continue that trend her entire childhood.
But truthfully.....who has more of a chance to grow up to have a life worth living? The child that is left like a weed to grow wild, caring for themselves-not being nutured or loved or even accepted by the people who brought them into this world? Or my daughter-cherished, overly-protected at times, brought up by family, friends, church that loves her even when she fails to acknowledge it, provided for on so many levels?

And yet....

My daughter is the one with the labels. Developmentally delayed. Autistic.

And their children are Normal? I think not.

I look at my daughter, and I see a miracle in motion. I see her life stretched out before me and worst-case scenario...she lives in our house and we help her the rest of our lives. That is not a bad outcome, at all. That would be a blessing also. I want her to live life, be happy, love the Lord, serve the Lord. To stay away from drugs, sex and craziness.

What do They see when they look at their children, I wonder? From the outside, it looks like they see another mouth to feed, a mistake, a nuisance, something to use to their advantage, and on a good day-a friend to rely on,confide in, party with.

What they don't see is what I see.

I am thankful....

2009-11-28T05:56:00.000-08:00

Because being thankful means giving praise for blessings, both big and small, to a wonderful Creator, Son and Holy Spirit. I am thankful.
I am thankful for my husband-no one else on earth "gets" me like he does. He keep me sane, he lends me his hope when I have none. There is joy and comfort in knowing that he treasures me just as much as I him.
I am thankful for good health and good finances.
I am thankful for having a career that blesses me on a daily basis. Teaching young children is something that comes naturally to me, and I am grateful to say that I love my job. Most of the time.
I am thankful for a church family that is accepting of me and mine. There's no strings attached to that acceptance; any and all service given to our church can come directly from my desire to serve God.
I am thankful for my extended family. My parents gave me the gift of unconditional love. I only hope I can return their investment in my own children. My in-laws raised an amazing son-he is everything a wife and mother could possibly hope for for her own little family, and I am grateful every day for their hard work and devotion.
I am thankful for the chance to grow up surrounded by grandparents, aunts, uncles and cousins who loved me and each other. I miss that as we have buried some, moved some away and just drifted apart when work and our own families intervened.
I am thankful for a sibling that shares a common beginning in life. I am blessed to know him; he has one of the kindest souls to ever walk this earth.
I am thankful for friends. People who genuinely care what happens to me for no other reason than they love me, warts and all. I am thankful to return that favor also.
I am thankful for my children. Words fail to express how deep into my soul that bond goes for me. Helping them learn has opened so many windows of illumination for me. I can never repay the gift that has been given to me by my children.
I am thankful for the gifts of the seasons. A warm wind running through the tree blossoms in spring, A hot, dry sun baking me to the bones as I listen to the sound of locusts outside, The first cool stirrings of autumn as the leaves change, and Quiet snowflakes in winter.
I am thankful to be of service to others. No other hell could haunt me as much as being useless.
Most of all, I am thankful to have my faith. Jesus has stood by me in many circumstances, both good and bad. He has held my hand even when I was too distraught to notice. He has picked up the pieces when my faith crumbled, held them close and protected them for me until I thought to ask for them again. His love for us is what allows me to be grateful for all else. Happy Thanksgiving to all.

It went really well.....

2009-08-15T06:55:00.000-07:00

Thursday and Friday were the first 2 days of school for the girl. She was in Pre-K, a regular ed classroom with 20 kids. So it was chaotic, of course, the first 2 days always are with kids crying for mom, teachers trying to reassure parents, get enrollment forms filled out, supplies put away, restore order continually, get the routines and rules established and oh yeah...teach. Plus make sure every child feels loved, accepted, safe and having a good time. Easy as pie.....
Chaos is not L's best friend. She does not love the crazy schedule, as most parents with a child with PDD-NOS know. But she held in there really well-there were a few times that she had to go off by herself to stay calm, but for the most part, she was with the group participating every step of the way. I was impressed, especially since I witnessed it firsthand and know it to be the truth and not an empty reassurance by a sympathetic teacher-friend.
She doesn't really care to play with other kids on the recess or center time. She doesn't mind if they play beside her, but she won't initiate interaction with them-or answer them if they talk. She will run beside them and play chasing games, just no conversation. So I'm curious to see if that will improve as she gets more comfortable in this new situation.
Pre-K did get the highest level of commendation last night though. She told me at bedtime that she loved that classroom the best because the door is yellow, like Spongebob. Then she muttered, "I wish I could draw Spongebob's nose-his nose goes up and it's hard to do. Patrick doesn't have a nose. Squidward has a nose, his nose goes down like this. I can make a good Squidward nose." And then she was off into her own little imaginative world and ready to be left alone, so I left her to it. She'd earned some downtime with Bikini Bottom's finest in her dreamland....
Here's hoping it keeps getting better! *fingers still crossed*

Count your blessings....

2009-08-03T05:15:00.000-07:00

As I sit here at 7:15 AM, drinking my coffee and trying to regain consciousness, I am listening to my kids. The TV is on Dora the Explorer and they are playing on the living room carpet. They've been playing nicely together with no fighting for about 25 minutes (yes they have been up since 6:45 AM), some big imagination game with shooting and soldiers (my 8 year old son) that hug and tell each other, "Be careful honey. I love you." as they are leaving for war (my 5 year old girl). If that doesn't make your heart happy, I don't know what will.
I am so blessed. Nothing can possibly be more of a salve to my heart than loving those two.
Thank you, Lord for your bounty. Even at this early hour!!

Wow....Have I really been gone that long?

2009-07-24T09:46:00.000-07:00

While scrolling through my favorites saved on the computer today, I realized, "oh yeah....I have a blog!" Completely forgot about it over the summer months..... Oopsie pooh!

We have had a wonderful summer. Lots of vacations, ball games, trips, swimming, cook-outs. All the things that make summertime fun.
We opted out of little leage for the little girl this summer. The boy however, loved his summer ball-he even went on a trip to the big city and watched a professional ballgame with dad. As luck would have it, even got to participate in a 7 inning stretch sideline game and won a shirt and a ball. Got the mascot to sign his ball cap~all in all, a perfect day for him.
Girl starts school, Pre-K, at the school I work in next month. I am excited for her as she will be in a regular ed. classroom, but a little apprehensive. I wish she could go to a school that had a little more to offer her in assistance if it is needed. I am frustrated because I know the educators are doing their best, but their resources are limited financially and they are overloaded. It's absolutely ridiculous how overloaded the teachers can be. No one could physically do all that is expected of them.
I am also apprehensive because I want it for myself. I want her to be able to stay in the regular classroom. I want her to be able to make it without extra help. And I know it's selfish, but I am not ready to give up that dream yet; the dream of her being normal. Why can't I let that go? I don't know why. But I know until I witness it for myself that she absolutely can not cope in a regular classroom, I will not be ready to admit that she is "special needs".
Denial?~yes~ The experts say that parents of children that have "issues" grieve the loss of that perfect child in stages, very much the same as the family grieves when someone passes on. I keep cycling from shock, denial, anger, guilt, shock, denial, anger, guilt.....and I can't stay with acceptance for very long at all. I can't accept it until I know for sure that is the only way it can be, absolutely without a doubt. And even then I don't know if acceptance will ever happen for me, because for me acceptance equals giving up.
With the boy, I worked at the school then too. I was just curious to see how he would get along with his peers and teachers because he is so high energy. He did fine, after a few bumps in the road and trips to visit the principal. He's going to be fine~in fact, I feel he will excel in school and sports.
The haaaarrrdddd part with the girl is, she looks normal. 70% of the time, she acts like any other 5 year old girl~the other 30% of the time though.....that's when I think I am going to lose my sanity. When she gets overstimulated and things get to be too much~she bounces, hits, screams, jumps, cries, faster and more franctically until someone intervenes and helps her. She can't calm herself yet if she gets too far out there. Watching her when she gets like that feels like someone is reaching in my chest and punching me in the heart. Very few of my friends or co-workers have seen her in full 3-D action; I'm curious to see their reaction also. I wonder if they will still think she is normal if and when she explodes at school.
Soooo, long story long; I am ready for school to start so we can just find out what it's going to be like. The suspense is killing me already.... Geez!

Who wants whine with dinner?

2009-03-18T13:08:00.000-07:00

Ahhh. A lovely, lazy spring break week.

My parents kept the kids for me for a couple of nights so I could get some of the deep spring cleaning done AND have a bit of relaxation time for me. I got alot accomplished-mostly the cleaning, organizing and chunking out of toys that seem to multiply like rabbits in my boy's bedroom. I didn't mess much with L's bedroom, because she gets so upset by change. I did switch out her toybox for a new one that was bigger, but that was it.

Then today my parents came to my house and brought the kids back. And we all hopped in their car to go for a nature hike and see some wildlife at a local refuge. It was really fun; we fed prarie dogs, ducks, fish and watched buffalo and longhorn cattle. And enjoyed the beautiful sunny spring day.
I was so happy to get the kids back-I've missed them so over the past two days. And the boy was glad to be home; his Wii and dog were missing him pretty badly also. And I thought L was happy to see me, but she started crying in the car that she wanted to go back to Grandma and Grandpa's house and told me several times, "I don't want to stay here with you anymore." "I don't like you much." Granted I know it's just that she has a problem with changes.... but still. Part of you takes that kind of personally; like the rejection it sounds like. And another part of you worries that the "mother bonds" are not as strong as you thought-maybe she really doesn't care at all who takes care of her as long as she is getting what she wants from her caregiver. And that kind of is the case, to a point.
But I had an ace up my sleeve. I reminded L I had put out new soap in the bathroom (purple this time) and offered to let her play with it after Grandma and Grandpa left (what's a little bribery now and then, I ask you?) Then all she could say was, "Mommy, you put new soap out just for me? Thank you Mommy, my little buddy!" So while still grumpy and whiny, I have momentarily reclaimed most favored status. I'll quit whining eventually.

Wow, that's good news!

2009-03-02T16:57:00.000-08:00

We had some really good news this past week at our daughter's school. When L's OT showed up there to do her therapy, massages and joint compressions, a substitute teacher (who has been there about 2 weeks) remarked to the OT, "Well, what exactly is the reason you see L?" To which the OT replied, "She has an autism spectrum disorder, PDD-NOS." The sub was really surprised and said, "But she's the smartest and best behaved kiddo here!"

Those kind of moments help balance out the not-so-great times pretty nicely. I had a warm fuzzy feeling for the rest of the day. I am absolutely amazed at how much it has helped just working around her sensory issues and doing some things to help keep her calm. The joint compressions, deep pressure massage, weighted blankets, heavy work and even epsom salt baths (they actually do work, I was surprised). Above all, keep that schedule.

She has her moments though. Like when she chunked the tester's toy at her head because she didn't want to participate. Or kicked her friend in the shin as way of a greeting (hello-WHACK!!) And I won't even discuss the indignities our poor cat, Luna-Tuna, suffers on a daily basis.

She's made enough progress lately that we are debating letting her play little league tee-ball this summer on the young team. Still not for sure on that one though. It's a little scary, just in case she gets mad and decides to bean someone unexpectedly. Which is definitely a possibility...

Yeah, maybe give her one more year before tee ball. Little League's overrated anyways.....

We are warrior mothers

2009-02-23T19:25:00.000-08:00

WARRIOR MOTHERS
I like that term. I came across the description "warrior mothers" today and actually stopped to read the article (I wish I was cool like that and could link it here-I would if I could). Warrior mothers are moms that are out there, fighting like mad for their own kids and other children that have issues-be it autism, cerebral palsy, cancer, seizure disorder-doing anything and everything in their power to advocate for change and improvement. And doing all they can to make their child's life as normal as possible, as happy as possible. I mean really, that's what any parent wants for their child right?~to be happy in life? So what if they are not a CEO or a carpenter or a short order cook. Can I, as the parent, help them be happy and productive on some level during their lifetime? And if helping them acheive their best means being "that mom" at IEP meetings, parent/teacher conferences, doctor's appointments, therapies, (and the list goes on and on forever) then that is absolutely what I will do. And do not stand in my way, because I am on a mission.
And by the way, the term is warrior mother, but I happen to know a warrior father personally. He's done it all-a field trip to the dentist with a group of 16 3 year-olds with our daughter and coaching a tee ball team with our son. He's watched Mary Poppins with our girl, repeatedly in the same day, because that is her favorite movie at the moment (that alone deserves some credit). He was right beside me for an entire week this summer, his only week of vacation, for a parent's autism symposium-he was completely committed to making it a fun trip for us and it was fun and informative. He's a rare breed-a true warrior when it comes to his family.

Good times

2009-02-21T18:19:00.000-08:00

It's bathtime. At the end of a fun Saturday full of a visit with the kids to Grandma and Papa, some yardwork, and building a big clubhouse out of a cardboard box.
Ending the day with Jello and cool whip. Hoping to watch Becoming Jane, but that's just me. No one else in my house is going to "go there" with me.

the "A" word

2009-02-16T17:53:00.000-08:00

I need to tell this. I need to write this down, even if no other eyes see it or no one understands or empathizes with our story. As much as it hurts to see it in black and white, that amount of pain has been festering inside me for months, maybe years as we've came to accept, in a way, the way it is.
One way that I've been working on accepting our challenge in life is that it could be worse-way worse.

Our childcare provider came to me concerned when our daughter was almost 18 months old. She described things I had noticed, but hoped were in my head. Our girl's refusal to listen or mind, her dislike of other people, her strange eating and playing tendencies, her disinterest in toys and peers, her speech delays. Plus her amazing temper tantrums, unlike anything I had ever witnessed before. As an early childhood educator, I thought I was just over-reacting, you know, reading into normal behaviors something that wasn't there. Then I really started to watch and the more I saw, the more concerned I became. Our baby's preference to be left in the baby carseat instead of being held, her colicky behavior way past the stage of colic, her disinterest in watching me or her other caregivers all took on a sinister haze as I considered the "A" word.

"Don't worry about autism. She doesn't have it."

Her initial evaluators through the state early intervention services (aka "the professionals") told me. My mom told me the same. I couldn't wrap my mind around her test scores, which were way below the developmental delay cut-offs. Surely she wasn't that far behind already. Surely I would have noticed my baby failing. We did what we could-speech therapy, occupational therapy- and I pushed the "A" word to the back of my mind.
Fast forward 2 years. Not alot of progress, but I have adjusted my thinking. I have let go of my preconceived dreams of a perfect, normal child and am prepared now to embrace my daughter for whatever may come. I am determined to fight for her to the best of my abilities.
And, as most parents in this situation know, more testing follows. This time, the autism diagnosis comes to the forefront again. And I grieve again all over, but we do what has to be done. More testings and the official, pediatric neurologist diagnosis: pervasive developmental delay-not otherwise specified (PDD-NOS). And part of me rejoices because we learn some wonderful news: there's a good chance that she will be on level developmentally with her peers by age 8 or 9. And part of me grieves yet again because this is not something that she will be able to have a miracle cure for; she will struggle and cope with her sensory issues for the rest of her life.
And now, fast forward another 8 months. 8 months of intensive therapy, inclusion in a regular early childhood classroom, IEP goals, one-on-one at home. And 8 months of glorious progress! 8 months of little successes building on top of one another! My heart soars. Can I dare to hope that the worst is behind us? Or is this just a smooth part of the highway and any day we are going to need the 4 wheel-drive because-guess what?- we are going off road again?

I truly don't know.

But I know this. At a seminar this summer, a mother stood up and told our group that when autism came knocking, it knocked at the wrong door. Her family wasn't going down without a fight, dammit.
I second that.

start at the first....

2009-02-15T19:12:00.000-08:00

Hello all. I am Tina and this is my first time with the whole blogging experience. I have much to say, but don't know if it is fit for human consumption. So I'll start with a history of me and go from there:
I have a good life. That's me in a nutshell.
I was raised in a small town, by both parents. We didn't have much money, but our house was full of love, laughter, life. I had a big, extended family full of grandparents, uncles, aunts, cousins, and greats, growing up. Many have passed on, but other loved ones have filled in those empty slots. The people have changed and the bonds have evolved, but family is still very vital to me on an intrinsic level.
I have had the blessing to marry the love of my life. It feels like the comfort of coming home blended with the excitement of our first kiss every single time I see him. We look so normal from the outside, that I wonder if others would ever guess that my heart still lurches when he walks into the room, 15 years later. We are a typical family in many ways. We have 2 kids, we have a dog and we have a cat. We live in the same small town where we both grew up, one block away from our church and within walking distance of the kids' school. Norman Rockwell couldn't have painted it better, I kid you not. It's exactly what I wanted growing up.
My son is exactly what people have in mind when they think of all-boy. Hiking, sports, biking, anything outside-plus a hefty dose of video/computer games obsession. He's into everything, and loves every minute of it. He's never still, never silent, always busy. And he's right in the midst of the snaggletooth phase, so he whistlesss when he talksss. Absolutely adorable, in my opinion. Big green eyes, eyelashes a model would kill for, a smattering of freckles, and a huge, toothless grin at all times.
My daughter is a beauty. Big blue eyes, blond curls like Shirley Temple, a sweet innocent smile and a laugh like the pealing of little bells. She is a girly-girl, loves to shop, loves shoes, loves glitter and jewelry and "sparklies". Hate, hates spiders. Loves to "help" me cook. Loves to color, paint and draw. And loves to watch Disney movies and read happily ever after books. She's right in the middle of the why? what? tell me more phase.... I love it. It wears me out sometimes, but I love it all the more because it is so fleeting, a moment in time and then it's gone.

There are other stories to tell and those are why I feel compelled to start a journal of our life. But this is the beginning and we will start here for now.....