Mira thinks she is being punished. When we talked about having a different teacher and being in a different classroom she sadly turned her eyes to me and said

“Mama, it’s all my fault. I learned too quickly” and she later followed up this assessment with “Mama, I won’t learn to read if I can go back to Mrs G’s class. Please Mama? I promise I won’t read” **insert anguishing sound of a mother’s heart breaking**

I’m sure her newly assigned teacher thinks I hate her. I did nothing to dispel that thought at open house yesterday. I frankly shared what Mira had told me and the fact that we were looking into moving her to a program closer to home.

I spent much of yesterday on the phone and what I learned was not encouraging. First off, several people who work in the school system to run the various ASD programs could do nothing for me, even though they sounded truly troubled by what went down at her school. There is a notable shift in volume, timing of response, and sincerity in one’s voice when they switch from speaking in school board rhetoric to honestly responding to your problem.

Secondly, I discovered that the principal at Mira’s school loves to “shake things up” in some way every year and see where the chips fall. If all my phone calling got me nowhere on fixing things for Mira, I hope it at LEAST landed her principal with a sharp reprimand and a warning. You don’t unexpectedly “shake things up” just for the hell of it with ASD kids - you just don’t.

Third, there is not much I can do but send her to school for now. I can’t keep her home without risking being arrested for my child’s truancy from school. It’s up to the principal whether or not absences are excused and do you think that she’ll even consider excusing them if I’m stirring up trouble for her? HA! I can’t risk jail time. Boden has to eat, ya know?

The reason I have no option but to start her back at her old school is because the autism programs saw unprecedented enrollment this summer and there is a 10 day freeze in place with the county. The two schools closer to me (which I found out also have girls enrolled in their programs- Mira’s never met another ASD girl) are at capacity. After 10 days of classes they do a head count of all the kids who have shown up and depending on the numbers, shuffle kids around and hire new staff. I can put in for a change of enrollment but it will be immediately turned down due to this freeze. Now had this change in placement been handled properly, I would have applied to have her transferred at the end of last year when there still were openings but since I am applying NOW, I am screwed. You see how this works? You see how many parents would just give this up and the principal gets her way and keeps all her special funding? Dirty, underhanded and NOT in the best interest of these kids.

So what is a mother to do?

I’m going to send my daughter to school and encourage her every day to make it the best day she can

I’m going to write a letter to her new teacher asking that they use visits to her old teacher as a reward for good behavior and well done school work. I’m hoping this will reverse her feeling that learning has been a bad thing.

I’m going to visit the 2 programs closer to our home and see if they are a better fit

At the end of 10 days I am going to evaluate her situation. If she is having anxiety over everything still, I’m going to put in for a transfer to one for the closer schools, which by that time should have spaces and no longer have an enrollment freeze.

I’m going to make damn well sure that continuity in her educational staff becomes an integral part of her IEP so this doesn’t happen every year. I’m planning on having her reevaluated in summer of 2009 to see what changes have occurred from a clinical point of view and will make sure that this is written into their report so the county can not ignore my request.

Thank you for all your encouragement and support. I hope we can weather this storm.

My oldest child, Mira, is on the autistic spectrum (ASD) Last year, she and another little boy from her preschool were assigned to school L which is 8 miles away down a very busy highway in another town. I was given no choice and this is where she HAD to attend.

During the first week of school the other little boy (who lives a a much more economically fortunate neighborhood) was transferred to the school which is only 4 miles from my home down slow roads through neighborhoods. I briefly considered fighting them so my daughter could be closer to home too but during that week she bonded so well with her ASD classroom teacher, we decided it was in her best interest to allow her to remain there, especially because the teacher she had the previous year was a nightmare and Mira never adjusted to her.

Mira had a fantastic school year with some blips along the way which we were able to work out agreeable solutions too. When the school year ended we were told that Mira would be back with the same teacher again this year. We spent all summer talking about school to prepare her for returning. She wrote notes and drew pictures for her beloved teacher. She talks about her teacher every single day. On a slow day she may only mention her 2 or 3 times but most days I hear about this teacher 10+ x a day (repetitive speech and topics are a hallmark of ASD)

Today my friend Jennie went to the school for kindergarten open house. During open house she went to visit this teachers room (he son is also ASD and was in the same class). As she walked around the room, she didnt see Mira’s name on any of the tables and asked the teacher where Mira was going to be sitting. The teacher explained that the PRINCIPLE decided to reassign the ASD children. She and a few classmates were getting pushed to a different ASD classroom and not just a different teacher but a total stranger. Last years other ESE ASD teacher was replaced.

ASD children have a VERY difficult time handling change and transitioning from one idea to another. The school was not going to tell me until I took my children to open house tomorrow. I was going to walk into this teachers classroom, watch my daughter throw her arms around her teacher and aids and then be told we have to go somewhere else!!! This was never mentioned as a possibility at the end of last school year or I would have prepared my daughter for this to happen!

Livid is not even the word I would use to describe my mood after Jenni told me. I literally burst into angry tears and just sobbed. They say the past behavior is the best predictor for future behavior and if that is true then this change is going to send my daughter back into a downward spiral- panic attacks, biting her fingers bloody, night terrors, wetting herself and other troublesome behaviors.

The entire reason I allowed my daughter to stay in this school which is twice as far from home was because of her relationship with this teacher and my understanding that she would continue to be a part of Mira’s education through out her years there. Now I feel duped and angry on my daughters behalf. I don’t want her riding the school bus so far if she’s not going to be in this teachers classroom. My poor daughter witnessed a motorcyclist getting hit by a car on her way home from school last year. I know that accidents happen but you are much less likely to see a motorcyclist brains bounce on the pavement if the cars are only going 30 mph verses 60!!!

I called her school and ended up having a phone conference with the guidance councilor, her old teacher and this new teacher. They tried to convince me to just go with this decision they made for her and not upset the apple cart. Um, excuse me? This is going to topple my child’s apple cart and then run over it with a bullet train and you want me to just go with it? I was basically told that if I was unwilling to go with this plan then good luck finding her some place else to be.

If we are going to put her through all this emotional upheaval then we are going to rip off the band aid all at once and move her closer to home. I have been making phone call after phone call trying to get her shifted to the closer program before school starts on Monday. I was told that this might not be a possibility because the program closer to us may be “full” I plan on railing so loudly that they’ll either want to switch her back to her old teacher or make room for her at the new school. I was not given the ability to make this decision when your program still had room, I was given the information TODAY and her classmates won’t even know until tomorrow (Friday). This smells like a power play on the principles part to keep my child’s education dollars in her school by cornering me with no choices left.

My daughter deserves an appropriate education in an appropriate facility. If her emotional needs are not being met, she will not achieve academically and will spiral into depression. My daughter has an IEP and brings extra funding to a school because of her ASD. I have the right to take those dollar to any educational facility that I feel meets my child’s needs. If the county doesn’t figure this debacle out, I’m going to take those dollars to a private facility via a McKay Scholarship. I will not be bullied and I will not back down. My daughter deserves the chance to achieve and with ASD that means setting these kids up for success. This whole situation is setting each of these kids who are being underhandedly shuffled up for failure and I hope the other parents will take the appropriate steps to be heard if this not a positive change for their child either.

I have a lot that I want to talk about but The Beast is currently dominating our domestic scene. Mira is really struggling. It began a few weeks ago, around the time they switched her to eating lunch with the mainstream kindergarten class, and has rolled down hill from there mowing every single one of us down.

It started with complaints of stomach aches, back pains and her telling us “my body feels like something is wrong!” Given her predisposition towards obsessing on the unpleasant, we figured that it was fall out from Levi’s illness and hospital trip, but it raged on. Soon she was stepping off the afternoon bus so jacked up on her tiptoes that she had the appearance of a ballerina up on pointe. Friendly greetings were replaced by beastly snarls, her speech began sinking back into repetitive phrases, and there was much flapping of the hands. Crying became a full time sport and I caught her biting her nails- something she rarely does. ENOUGH! Nothing we were doing was diffusing the situation and the rest of us were rolling headlong down that hill into bad-mood-ville.

Friday I went in to make adjustments to her IEP and had the opportunity to speak with her teacher about how things are going. Amazingly, while falling apart at home, Mira is simultaneously opening up in her mainstream class. Last week she actually started speaking in class without prodding- a definite sign of comfort- and she nearly had a melt down in her mainstream class- another huge sign of feeling relaxed. But even with these positive growth steps, she’s regressing as soon as she is at home in her safest zone so the autism teacher and I brain stormed about what exactly is going on.

We came to several conclusions and are going to work through the list hoping that one will be the solution to our problem. First we are adding an afternoon snack. When she switched from eating lunch in her autism classroom to going into mainstream lunch, her meal time was bumped up an hour. This leaves her going over 4 hours with anything to eat and considering her metabolism, 4 hours can seem like 3 days to her. If the problem persists, we will try cutting down the number of days she is going to regular lunch to 1-3 days instead of all 5. It IS extremely noisy and overwhelming in the cafeteria. Not being able to eat in peace and being overly stimulated for 30 minutes a day then being expected to learn after that may just be too much. If the issues still persist we will take mainstream lunch completely off of the table and instead opt to send her to her regular classroom’s snack time and allow her to eat lunch in her autism classroom.

I was just starting to feel accomplished and hopeful that we could start working past this bump when Friday afternoon happened. On the school bus home, Mira witnessed a pretty nasty traffic accident. A car plowed into a motorcyclist who was thrown form him bike onto the pavement- he was not wearing a helmet. Mira saw every bit of what happened and came home totally pale and shaking. Her greeting to me was “Something HORRIBLE happened on the bus today mama. We go home and go in my room for some privacy so I can tell you about it please”

She did her level best expressing to met what had happened. There were some parts where words completely failed her and she could only jerkily gesture while making weird noises- it was entirely too intense for her to articulate. Near the end of her tale, she broke into tears begging me to reassure her that no one would hit her Papaw, Uncle, or Aunt when they ride their motorcycle and to tell them to wear their helmets so “their brains don’t burst.”

Poor kid. I really wish she had not seen that.

Friday night, everything proved to be simply too much. At bed time Mira had a full blown panic attack. It took 2 hours to get her calm and to sleep. It was very hard to see her like that. I know every single sensation she felt while it raged on. I know how she felt off kilter, her hearing was wrong and her breath felt caught in her chest. I know how her head swam, her body shook and her stomach knotted… Anxiety is one hell of a nasty beast. I hope we can rein it in before it rears it’s ugly head again.

She is a mix, a daily stormy mix of

and

She is tall

and so beautiful

She is autistic.

And though she thinks a little differently, she is just as smart, just as loving, just as human as a “neurotypical” person. So please, don’t ask me if she is defective. Don’t shake your head sadly and say “I could never imagine the burden” and never ever ever make her feel as though she doesn’t have a chance to chase her dreams.

It’s still autism, as we expected. I can’t tell you exactly which flavor has been decided until I have the full report in my hands, which will be about 2 weeks from now. Mira tests as average and above average in many areas but her processing skills are abysmal. 100 is average and in processing she only scores an 80. This means school is going to be tough and will require a very understanding teacher for her to successfully mainstream. The current doc agrees that the Autism classroom will not be challenging enough and may even spark regression if Mira stays there too long. However, Florida schools are driven by a test called the FCAT. If you don’t pass the FCAT, you can not continue on in your school career. This means that the students are bombarded with information and fast paced learning - not exactly ideal for a resistant to change autistic child with a notable processing issue.

Finding out that her processing problem is so pronounced kind of socked me in the gut. I have felt pretty numb for the last two days. It means more battles with the school system, it may be pushing for her to have a personal aid, it may mean switching schools for first grade and if all else fails it means plan B.

Everyone should have a plan B when it comes to REALLY MASSIVE issues. I consider my children’s educational career to be a huge issue. Who wants to face 12 years of pure torturous hell? I could home school, but for Mira that would deny her a lot of what she needs to deal with - a constant consistent full court press of social situations and interaction. Home school is not off the table but it is more like plan E or F. Plan B is moving.

Florida is not known for its social service programs. We have something called a McKay scholarship that allows special needs kids to take their education funding to a private setting more suited for them. It is all tied up in some mystery formula called a matrix number, which is based on diagnosis and services required. The state makes it very hard to get services, thus keeping matrix numbers low and lessening the chance that parents like me can take their children to a more suited program. To put Mira in the ideal school, after the McKay dollars were applied, we’d still be facing a 1,000 a month tuition bill. I can not afford that. Then to add a cherry to the sundae that is McKay, the state has repeatedly threatened to do away with the program.

Plan B it is. Unfortunately plan B involves snow. Did you know that I had never even laid eyes on the white stuff until the summer before 10th grade? Furthermore I never witnessed it fall form the sky and accumulate on the ground until Christmas of my freshman year in college. Yet, here I am facing the possibility of one day acting on plan B.

Now I know some of you think I am jumping the gun but I must confess, Mira and I are a like in a lot of ways. I do new things two ways. I either do it so spontaneously that my brain doesn’t have time to panic or I plan for a long time. I mean LONG. I must mull it over and recognize it as a possibility for months, maybe even years before actually acting. In this case, I will house hunt, I will seek out crime stats, I will poke around for organic food stores and Target, I will chart the climate changes through the months and imagine enduring the cold, the ‘I will’ list is a mile long. I will do this all just in case we can’t make things work here. I had hoped our next move would be to someplace we would live forever. A little farm in a sleepy town (but still less then an hour from Target, I may be nuts but I’m not insane). I’m willing to make some pit stops though if it will improve the quality of life that my child will lead during and beyond school. Her life is so much more important to me then my own; I want it to be as charmed and fulfilling as it can be given her challenges. Make no mistake, I know she is destined to do great things. She has talents that have already begun to amaze, I really just want it to be a less painful road to travel.

Over the past few months, Mira has been surprising us. She is, and has always been, extremely sensory defensive when it comes to food. The smells are too much, the textures overwhelming and god forbid whatever we are eating is the least bit messy- Mira can not abide by messy meals. Lately though, my persnickety princess has pressed for new foods. Towards the end of the school year her preschool worked on learning the food groups and talked about healthy eating. The lesson seems to have stuck with her.

Trips to the grocery store have turned into an adventure. Mira walks up and down the isles, wide eyed at the selection. She peruses the fish counter and is giddy in the produce section. I am happy to accommodate her newfound adventurousness and we bring home parcels of Mira’s choosing. I do my best to make her picks appealing. I marinate salmon in maple syrup, turn down the fire on my arroz con pollo, and saute apple slices with our chicken sausage. Mira eats. The first forkful is cautious but she soon is shoveling it, leaving dinner guests to wonder if I starve her all day long.

Last night I set Mira’s plate down with trepidation. At her request I made tacos. When she begged for tacos, she had no idea what they were but a friend had spoken so passionately of his love for tacos that she caught the fever. Even with her new found food adventurousness I was afraid that tacos were a deal breaker. For starters they are MESSY and Mira can not cope with messy. Her usually reaction involves some serious hand flapping which spatters all bystanders. She dances around on her tip toes, squealing and grimacing and her speech deteriorates into a repetitive sound that signals NO WAY NO HOW MAKE IT STOP! Combine this reaction with a separate, yet equally disruptive, freak out over the texture of red meat and tacos start looking like the Antichrist. I did it though, I made them and set them down in front of her.

I briefly considered diving behind the couch for cover should taco time take a turn for the worst. Before I had made up my mind, I heard an astounding sound:

“Oh yum mama, tacos are sooooooo good!”

With another food victory under my belt, I am now on a quest to up her meat intake. Poor vegetarian readers, avert your gaze before you lay eyes on what may possibly be the best use of meat for the purpose of enticing small children to partake:

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Also if you have a moment check out Levi’s digital scrapbook, aka scrapblog, in the post below. Every view is an entry for me to win a trip to BlogHer so all of you already going can meet Mr Levi (and his much less adorable but still pretty fun Mama)in person. Bonus, those of you doing the BlogHer scavenger hunt could totally score a picture of you with a nursing momblogger nursing (that alone is worth 15 points!). Everyone Wins!

The Hubster and I have been plowing through piles of probing paper work all in the spirit of having Mira reevaluated. Nearly two years ago, I placed her name on the local college’s psychiatry departments waiting list for a free analysis. Her name just came up last month! When I got the call I jumped on the opportunity, hoping to walkinto Kindergarten with a clearer picture of her needs. She has grown by leaps and bounds over the last year since her official diagnosis of PDD-NOS and we had been pondering having her rechecked to see if Aspergers might be a more appropriate diagnosis.

I went in with a set of expectations based on how things were handled last time. Hmm, guess I should just chuck those out right off. Instead of me filling out 843 sheets all about her at home then over one 2 hour visit walking away with a diagnosis, we have a much different scenario.

My first visit was just to talk about the situation sans kids. The second visit involved Mira meeting the doctor and developing a bit of a bond. For the last 15 minutes they did some work to see how to pace the rest of things. Our third visit was about an hour of testing and we have at least one testing session to go. Only then will they decide on a diagnosis and make recommendations.

Of course there are still the 843 questionnaires about my daughter but there are also 6 or 7 about me and my husband and our family. The Hubster also has all the same paperwork to fill out about Mira and himself. We aren’t allowed to discuss our answers whiling filling out the paperwork so we retreat to different locations of the house.

The questions make sweat bead up under my eyelids. They are probing and almost accusatory. They are long, complex, and awkwardly worded leaving me to feel as though I may have answered oppositely of what I actually intended. There are questions that make my mouth drop open in horror just thinking of who would answer “Almost always.” There are papers that seem connected; things like mood questions to deduce how we are coping with a different child. Then there are the other questions. They ask about our sex life, which while playing a part in Mira’s entrance into the world, should not otherwise effect her. It’s not like we rouse the child at 2am to hold a camcorder while we go at it like bunnies. Heck, we’ve been dancing around the where babies come from talk, slowly dispensing only exactly the info she asks for. Just so you know, she does not believe me when I tell her how a baby exits the mom’s body. She stands firm on the notion that babies burst forth from a mother’s armpit or crawls out her mouth.

When I am done with my packet, I feel guilty. I should have had better answers. I am a terrible parent. I walk cautiously through the house waiting for someone to pop out pointing at me and say “Bad Mother!”

My husband is still hunched over his papers muttering to himself. He finally looks up and says “I feel cornered, like they are trying to trick me!” I can’t disagree. I’m afraid if I speak aloud someone is going to pipe in a studio audience and they will be booing me. BOOOOOOOOO HISSSSSSSSS BOOOOOOOO We know you sometimes scold your daughter BOOOOOOOOOOOOOOOOOO Bad parent. The paper work is nearly enough to send me back to therapy.

In a months time we should have more answers.

~*~*~**~*~**~*

If you have a few moments and want to read something a bit more uplifting, HI-larious even, check me out over at my new gig

Have you visited my review blog lately?

Also, you can check me out on The Commonline Project

I’ve been a busy little beaver lately!

Growing up, my best friend lived downstairs from me. He and I spent a lot of time playing and thus a lot of time arguing. Cussing was not tolerated so we developed insults of our own. Our fights went something like this:

“Skeletor can not kill Jem!, Jem! is outrageous”

“Oh yes he can, Skeletor can kill everyone!”

(here is where he chucks Jem! over my balcony into the bushes below)

“What did you do that for Big head?”

“Shut up bloody lizard!!”

“Big head”

“Bloody lizard!”

(this could go one for hours so I’ll just spare you the rest)

My kids have now reached this stage. We put our foot down over words like stupid and dumb, they are not allowed in our house, so the girls have started getting creative.

“You’re a banana butt!”

“No! You’re a banana butt you blueberry farter!”

“Be quiet mushy nose or I’ll tell mommy that you eat dog poop!”

I try to ignore these exchanges (or at least hide the fact that I’m snickering), hoping that they will work it out. I know that they will face worse in school so using home as a testing ground for their new found word weaponry isn’t a horrible thing in my eyes. I do, however, step in when it is obvious that someone’s feelings are truly getting hurt. I want them to know how to respond to such taunting but I also want them to continue to be the empathetic creatures they naturally are.

I have noticed though, that Mira is floundering with the appropriate timing of a vivid zinger (not at all unusual for a spectrum kid). Sometimes she’ll run up to a child she has never met and shout “You have a cantaloupe mouth!” and they in turn, run in fear from this clearly unstable child. I can’t blame them. I’m sure they have never in their short life been confronted with ill-timed fruit insults from a perfect smiling stranger. In an attempt to keep these social faux paux at a minimum I’ve been trying to teach her proper timing:

“Now say I’m a big kid on the play ground and I just called you a doodie head”

“You’re silly mama, you’re not a kid”

“Hey doodie head!”

“That’s not nice mama, I’m your kid, you love me”

I can tell this is gonna take a while. I guess it’s a good thing we still have nearly two months of summer left.

We yell, we scream, we whisper and we cry. It’s a circle. An everyday circle. What tips it off is different. Today it was washing her hair.

I am fully clothed and in the shower. I have to pin her between my knees while hurriedly scrubbing the scent of too sweet apples from her hair. I briefly wonder if when she is grown, the smell of apples will panic her. She is shaking and gasping like a fish deprived of water, only water is what started this whole mess.

One can not imagine the horror of water touching the front of her head and possibly running onto her face. It’s the same horror that strikes when a tag is itchy, when she wears blue jean shorts, when lunch at home is not served precisely at one-two-zero-zero. I talk about bravery, about how getting to go to swimming lessons means putting her whole head in the water. She flails and frets. I am certain that I must be leaving finger length bruises as I try to maintain my balance and still keep her slick wet body under the spray.

We emerge from the shower and I help her towel off. I must rake a brush through her hair while she sobs. I gently explain that we didn’t get a chance to use conditioner, her panic over the shampoo was all that I could stomach. She is dressed and skips off - for her it has ended. I am left worn and ragged, wondering if perhaps I used up all my patience during her toddlerhood.

I know that I snap more easily these days. My middle child has rarely known how placid and patient I can be. A preemptive “NO!” is more likely to escape my lips then a simple “I love you!” These are things I work on.

I am hoping over the summer we can weave a new pattern. Our home life should be settling down. The house is coming together, the end is in sight. My youngest is coming into his own, developing a groove. For 3 months it will be me and my three. My goal is to hide less, yell less, say no less. I am hoping I can relearn that less is more and hoping to build enough reserves to handle the storms sure to come with my oldest as she sails into kindergarten.

Last week was the IEP meeting. She will be going to a whole new school next year. New building, new teacher, new therapist and new friends. The bright spot in all of this newness is the hope I have for people in her new school “getting it.” For the first time she will be attending a school with an Autistic services class- someone trained in dealing with foibles such as hers. A small haven where I won’t have to defend her tiptoe walking, incessant fretting and unending need for routine.

After tucking her into bed, I hear her softly crying. “What’s wrong honey?” I curl my body into her bed and around her. “Maybe I can swim with no head in the water, I want to go to swim lessons!” I promise her that we will practice, that we will learn to be brave together. I think a lot of the journey ahead will be us, me and my daughter, learning to be brave. Her so she can face and florish in the world and me to face my own daemons. Letting go of this all or nothing pursuit of perfection, realizing that yes isn’t a four letter word, and accepting the bumps are part of the ride (sometimes the part that even makes you smile).

~*~*~**~**~ Today I received a rather nasty Email, I can only imagine that it is in reference to the below post. It came from a now defunct Email address that was just a jumbled bunch of numbers. I have since deleted it, not wanting to feel it stab my heart over and over again. It read in part

“you must have done illegals drugs, drank or have been a bad person for your daughter to come out with a disease. God is punishing you and now your evil ways has affected her life. Autism doesn’t just happen”

I hope you are as angery and incensed as I am. Who has the time to spend setting up an email account and dash off a rambling email filled with such hate? Who’s life is SO PATHETIC that they have nothing else to do? And who is so COWARDLY to do this anonymously. Opinions are like ass holes, everyone has one. It’s obvious to me that you KNOW yours is WRONG when feel the need to hide your identity. I hope when your time comes to square yourself with your God, HE/SHE will give you a swift kick in the Karma and send you the fiery way or perhaps reincarnate you as some type of butt worm.

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Recently I made an appeal for information regarding Mira’s condition on a mental health board I belong to. At one point I stated:

the doctors told me point blank that she is high functioning enough that with the right intervention will seem normal. She will always have some struggles that other people don’t deal with but she should function independently in the world just fine - the best news the parent of an autistic child can hope for

Someone then asked me to clarify what I meant by “the best news a parent of an autistic child can hope for.” I sat staring at the screen with hundreds of words fighting to burst out at once. My mind raced with images of my childhood and projected images of what Mira’s may be like. I mentally watched her grow, wincing as I felt the weight of the world on her. I took a deep breath and began typing my reply:

The best news that a parent of an ASD child can hear (in regards specifically to their diagnosis) is that their child has the highest probability of function on this earth independently.

This means that in all probability she can make it through what ever schooling she decides to take on

This means that she can one day live on her own, pay her own bills, control her own life

This means that as I age I will not have to constantly worry who will take care of her when I am gone

This means the world to me

As a parent, any diagnosis that has the potential to make your child’s life more difficult is devastating (even if only temporarily). Your heart aches for the future they will mostly likely face, you know it will no longer be easy because it is apparent that they are different. Not different in a way that they have decided to be, but different in a way they must be to cope. That kind of different is like standing in a room with roman candles shooting out of your head. I know what it is like to be that kind of different, I have had bipolar tendencies for as long as I can remember (as well as OCD and GAD). I share many traits with my daughter, enough that some doctors have wondered if I might have been diagnosed as PDD-NOS had someone evaluated me at 4 or 5 or 6. I found a way to cope and function in this world. It was a hard rough ride, one I rather my daughter not transverse. I hate to say it but the punishing verbal abuse I suffered at home helped me to cope with the abuse I suffered at the hands of my peers. My daughter will never have that “benefit”.

It left me feeling ragged, raw, and ripped open. There it was, spelled out. I face my fear now in black and white but I will face it every day, in living color, as I wave from the door and she steps out into the world.

I know that many of you are dealing with similar issues, perhaps you child is not autistic but spirited or high needs. The best book I have ever read, one that helped me to cope and better understand the situation is Raising Your Spirited Child I read the book when Mira was around 18 months old, just before Tessa was born. It clarified many feelings I had but could not put into words. It helped me to analyze myself and put myself in Mira’s tiny shoes. Most importantly it reminded me that I was not alone in this fight and that motherhood isn’t always sunshine and roses, sometimes it’s screaming over the way a sock touches your toes. This is one to own and never lend out. On those really bad days you grab it up and let those dog eared pages slide over your brain like a soothing balm.

Currently at the insistence of my therapist I am reading and applying the principles laid out in I Love You Rituals . I am using them with Mira and Tessa. Today I made a concerted effort when picking Mira up from school. Instead of buckling her in and driving off, I took a minute to sing a silly song, do the hand movements and invite eye contact. It was the first peaceful ride home from school in ages. I am very excited to further delve into what this book has to offer me and my children.

Does anyone else have recommendations for books about spirited, high needs, or autistic children? I am open to all suggestions and will be heading to the library soon.

and for those who haven’t been around recently check THIS out (or simply scroll down for gratuitous booty / booby pictures) and please help if you can!