Just a Little Kiss

“God didn’t need our schedule, an agenda or a list. He showed us each a million things within a child‘s kiss.” Karla Mercado

Life has been hard and challenging lately.  It has been full of meltdowns, fighting, sibling rivalry, agression and stress.  I had all but given in and given up when I reached out in a post to other moms of special needs children and was thrown a lifeline.  I was able to breathe again. The world that was colapsing in on me became stationary. I began to find sleep again. Not exactly sleep without nightmares, but sleep nonetheless. I found hope again.  I discovered I was not alone in this journey.

However, the friction the brokeness of connection between my snowflake and I continued to haunt me. I tried to find ways back, to reconnect, to dial back the stress and move and talk more slowly and calmly.  Nothing seemed to work.

Then today, one of the rushed days due to Physical Therapy and Speech Therapy appointments after picking up her sister after school, I tried to connect again in the brief moments we had alone. It felt so pointless, so hopeless.  Because it is our routine we run through a scripted conversation of communication skills: “How are you?”  “How was your day?” ” What did you do today?” Then I try to listen and focus on answers that are disjointed, confused and often off topic.  We work hard on conversational skills. I hope one day she will put it to use with someone other than me in a spontaneous way.  Anyway, I got her doing her homework on the way to therapy and we hit the road.  She was in a good mood, uncharacteristically happy and that lightened my mood. I have had her for 2 1/2 years and I have no idea what really makes her tick other than candy and maybe that was why she was in a good mood. Her teacher has little control over her class and has decided bribing them with sweets is a good ploy. I find it frustrating. I wish all the people who give my child candy would take them afterwards as well as to the dentist and pay the dentist bill. Anyway, I digress.

I got to the therapy building and took her in. I told the therapist that I would be gone for a few minutes during the therapy session while I went to pick up my snowflake’s older sister. I assured my snowflake that I would be right back waiting for her.  As I turned to leave, she grabbed me, stood on her tip toes and kissed me on the forehead. I was stunned. She rarely shows spontaneous affection. She will show “forced” affection. For example, when she goes to bed, I ask for a hug and a kiss and she sees her sister do it so she tries to comply by copying her sister. But rare is that day she will spontaneously show affection.  After all the trials of the last several weeks, I did not know what to do. I was literally stopped dead in my tracks. My brain though, was smoking with the thoughts whirring about in it.

Maybe all those attempts at connecting were not a failure after all.  Maybe it was not hopeless. Maybe, just maybe she really did feel love and know I loved her.  Maybe, just maybe she was able to feel and express love for me. Maybe, just maybe my effort, my work, my attempts had not been pointless after all.  I recovered my composer and kissed her back and told her I loved her and reminded her I would be back really soon and I left.

God knows I needed this. God knows I was at my wits end and running out of hope and God knew that that little, spontaneous, beautiful kiss could ease all the saddness, the stress, the feelings of loss and hopelessness. God knew I needed just a bit more hope in a more tangeable form. God delivered it in one unexpected, spontaneous kiss.

Being Retarded

Being Retarded.

 

I totally echo these words too. I understand the word too. Excellent post.

Lost

I have struggled to write my blog of late mostly because I feel lost.  I wish I could capture a thousand more moments just like were captured in the above vacation we took for Christmas.  It was a moment of sheer joy and amazement.  I wish her life could be filled with these moments. But, they are few and too far between.

In the reality that is our life, we struggle to communicate. She has begun to use very big words of late, especially words she hears me or her older sister use.  She may even use them in the correct context. But when you pin her on the meaning of what she has just said, she has no idea.  Then, there are days like tonight where she saw a concept on television where all she could do was giggle and make a face that showed disgust, but she could not put into words what disturbed her about the concept so that I could help straighten out her thoughts.  That is the typical day of communication, or the lack thereof.

I cannot seem to get her school to understand that the lack of understanding of language is an important skill that needs to be worked on.  I cannot get the school to understand that I cannot do it all and I cannot seem to get the insurance to understand that getting outside language therapy is an urgent necessity because every day that we wait is another day that she is in a communication box that is almost impenetrable.  I am tired of doctors looking at me like I don’t know what I am talking about because, after all, I am only her adoptive mom.

We have had successes in the past few weeks.  The biggest success is that we survived Christmas…no, not just survived, we enjoyed Christmas for the first time since the girls came to me.  She managed to have appropriate emotions and allow her sister and I to explain her toys to her.  She did not remember ever putting up a Christmas tree, but she remembered specific things about the ornament she has collected since coming to me.  So far, we have not had any meltdowns and she has stayed in bed and let the rest of the house sleep until she is able to get out of her room. She has finally followed this rule. This has taken me over 2 1/2 years to get her to do. Victories are there. People may see them as silly, or not age-appropriate, or just bad parenting on my part, but they don’t live in my shoes.  Success is success and I will celebrate it no matter how small.

I just dread the start up of school again in the new year because it requires me to go back to the advocate’s role and fight for services again. It requires me to find a school that won’t completely mainstream her in 6th grade because it would be overly chaotic and noneducational.  I am not against some classes with her peers, but I know my daughter and I know what she needs and mainstreaming her would be a disaster.  But, mainstreaming is popular in my area.  Of course, that makes me unpopular.  So goes the fight.

All I wish is that I could stop time, straighten out everything for her and get her the help she needs instead of always fighting the system, always fighting the insurance, always fighting to meet her needs, always fighting to understand her needs, to understand her, always fighting.

This is why my blog has been quiet for a while. I have been laid out from all the fighting, lost because I have only a tiny support system that truly understands our needs. The rest find it more easy to judge me.

I want my blog to be a positive place of growth and progress.  But, cognitive impairments, autism, and all the rest of the “labels” just are not glamorous and positive.  They have their moments and some of those moments are brilliant, but I am beginning to see that this life will, at least for the next few years, require me to fight. So, I guess I am going to have to figure out something I have yet to figure out. I am going to have to figure out how to pace myself, pick my battles and give myself a break. None of those lessons have I learned. So, it looks like there is just more than one of us on a learning curve. Personal growth is never a bad thing. So, we will forge ahead and keep fighting.

Communication Quicksand

I don't like sitting in the sand and getting sand between my toes

Me: You are a funny bird!

KM: I am not a bird, I am human. How can I be funny??!

On another day

Me: You are a crab today

KM: I am not a crab. I do not walk like this (imitating a crab walk)

And yet another day:

Friend: I can’t find my flip flop

KM: I can. I have my glasses on.

 

It has been a long time since I was on my blog. I don’t know why exactly, except I have been tired and overwhelmed and lost in this world of PDD-NOS, seizures, autism, cognitive impairment, CAPD, physical therapy, severe short term memory loss concerns and so on.  I have been lost without guidance. I have been mad, frustrated, hurt, and just plain stuck.

Mostly, I have been in a communication stuck mode. Communication, while sometimes very amusing, is mostly very maddening and only getting worse.  Not being able to effectively communicate with your child is maddening and frightening.  When I need KM to run or to hurry and she looks at me confused and barely quickens her pace, panic overwhelms me inside thinking of dangerous scenarios where I really need her to process quickly that I really need her to run immediately and I find myself thinking and fearing the worst. How can she not quickly understand the word “run” or the word “hurry”?

Recently, she started 5th grade. She had picked up this habit of creating her own words and using them when she cannot find the word she needs to express herself or her needs. I try to get her to repeat herself because I cannot understand what she is saying and when I ask her to repeat herself, she gets frustrated and just shuts down with a “never mind”!  So, now not only do I have a child that is so literal and cannot process what is being said to her nor can she find the words she needs to communicate to others, now if I don’t get what she is saying the first time, I might as well realize I will never get it because she is so frustrated and she probably is just as frustrated with her inability to communicate as I am with being unable to communicate with her.

I take her to physical therapy for an evaluation since her neurologist says she needs to go there and speech/language therapy. I find myself telling them the same story I tell every other specialist. Why is the school not helping her with speech/language, Occupational Therapy, Physical Therapy, etc.  The school refuses because her abilities are commiserate to her cognitive abilities.  So, even though she needs to progress, they will not help, they will not try, they don’t care.  I am left holding the bag trying to figure out which of her needs hold the most importance and what she needs the most. I am left fighting frustration and tears as I hear therapies she needs for her central auditory processing disorder, CAPD, is not covered by insurance and costs over a thousand dollars.  She has been dropped through the cracks for the majority of her life and how can I help her be able to function in life as she grows up.

The older she gets, the more painfully obvious her delays.  The more pressing it feels to get her the help she needs.  If she cannot effectively communicate with those around her, how is she ever going to be able to function even semi-independently on her own.  No matter how hard I try, I feel like I am failing her. I feel constantly lost, stuck, impotent against the overwhelming needs.

Then I have to worry about meeting her older sister’s needs. She is so impressionable, so vulnerable, so much in need of a mom that can meet her needs and be able to focus solely on her. Being a teenager is not so easy neither is dealing with the demons of her past.

I wish it weren’t so hard to get help and aid to meet my child’s needs.  I wish I were smarter, richer, more patient and had more time. I wish the girls had come to me sooner.  I feel badly, sometimes, that these beautiful children got only me when perhaps they could have gotten someone with more resources, maybe a two-parent home, better health insurance, etc.

But they got me. I will be hanged before I will give up fighting for my beautiful, sweet, complicated daughter. I will not quit trying to find ways to communicate with her and teach her how to communicate with others.  I will not quit trying to find ways to help her process and deal with the cruelty of her past so that it does not forever hold her in its tangled grasp. I will not give up. Somehow, we will find our way and somehow, if with no one else but me, she and I will develop the ability to communicate. Somehow. Someway. Autism will not win. I won’t let it.

 

 

 

Parenting Guilt

Lately, our house has been filled with violence, chaos, anger, frustration, tears, and raging hormones. It has not been fun. In fact, it has been so chaotic and disharmonious, I would prefer to go to bed and just pull the covers over my head and pretend I don’t exist.

You see, I have an 10 year-old, soon to be 11 in the next 3 weeks, who is nearly 5′ tall and a developing teenage body with hormones raging. She is violent, angry, defiant, overly sensitive, and exhausting to parent.  I have been thinking over and over how I can change the tone in our home. I am so tired of correcting her and trying to offset the negative with more positive than negative and that is hard to do when there seems to be less positive than negative and it really takes a lot of thought and intentional parenting to come up with a lot of positives even for the tiniest things.  But, I am trying really hard.

However, upon reflecting on the predicament in our home and brainstorming ways to fix it, I realized that not only am I part of the problem, I am also part of the solution.  The solution is absolutely almost impossible for my brain to do.  I am looking at an 11 year-old, for all intents and purposes, who is going on about a 5 year-old developmental level.  Imagine an 11 year-old who is really only 5 years old at best.  It requires mental gymnastics for me to try to stay on top of my game parenting her sister who is exceptionally bright and then turn my brain around and look at a child almost as tall as me in a teenage body and think 5 years old in behavior and in consequences for bad behavior.  To add to the chaos is the fact that my little, big snowflake’s issues is her severe short-term memory loss.  I can give her consequences for negative behaviors; the only problem with this is that within a couple minutes, she has no idea why she is receiving consequences.  The only thing she sees is that she is being isolated in time-out or put in bed early and perceives it as I do not want her to be with me and the rest of the family. This could not be any farther than the truth. The fact is that I desperately want her to be with me. I want to be able to cuddle her and not be so frustrated with her that I don’t even want to be in the same room as her.  I desperately want to help solve the issues that make her violently angry.  Part of this is also complicated by her severe auditory processing disorder.  What she hears is not usually what is being said so her perceptions are almost always skewed.  Some days, in fact, most days feel like a ongoing loosing battle.

When analyzing all of these facts, I realized that some of the fault was mine.  Since I have only had her a year-and-a-half, and a good part of the first year was spent just getting her issues diagnosed, it is not like having raised her since an infant or toddler and growing at her pace and getting my feet under me and used to her delays. I have had to learn constantly on a run to keep up with the medical and mental diagnoses and am trying to just keep my head above water to keep from drowning.  Nevertheless, the problem is partly mine.  I see her, I look at her and my brain does not automatically say her behavior is consistent with her developmental age, so relax and stay calm. This is appropriate for her stage of neurological development.  No, I look at her, see the pre-teen child and automatically say, wrong behavior, you know better than this!  In some ways, this is not all bad, as a friend of mine pointed out to me, because it is constantly pushing her forward to work harder at her behavior and work harder at developing those age-appropriate skills.  But, I think, in some ways, it is doing more damage because it is causing her to give up because it seems like no matter which way she turns, she is always in trouble.  It also is causing self-esteem issues.  She already has enough self-esteem issues because she is cognizant enough to realize she is different from everyone and she sees it as a negative thing, not a positive thing.  She is constantly in competition with her neurotypical sister who is exceptionally bright.  She wants to do everything and I do mean everything exactly like her sister and then ask me who does the activity best.  That is as bad as asking someone whether your outfit makes you look fat. It puts me in a no-win situation.  Nevertheless, it doesn’t change the fact that I am part of the problem and the solution.

Somehow, I have to start remember 5 year old, 5 years old, 5 years old, 5 years old! Her behavior is consistent with 5 years old. RELAX! Remember what a 5 year old acts like and what behavior should be expected and accepted and deliver consequences accordingly.  It doesn’t fix the severe short-term memory issue; neither does it fix the severe auditory processing issues and nothing that I am aware of will help me with these problems, but if I can just relax and stop expecting her to act at her chronological age, it would be a start.

The guilt that I feel at being so frustrated with her to the point of not even wanting to be around her is almost overwhelming. I love her, and I love her intensely. I just hate the behavior and much of the behavior is inappropriate even for a 5 year-old.  However, she does not yet have the ability or coping skills to manage and control these behaviors.  I see my road as wrong and grueling and exhausting, but it makes those victories, no matter how small, that much sweeter.  It is hard, so very hard to be judged by other people when she is acting up, being petty, being her when other people have no idea what I am going through or what makes her tick and what sets her off.  Add to this severe PTSD from her past and severe anxiety and depression due to a variety of factors and it spells a twisted, almost impossible to unravel mess.

What I have figured out is that I MUST relax. I MUST find it inside of me to move past the grief and loss of how I thought my life would be raising these children and accept what is reality.  I never, ever knew any of these issues going in to the adoption because it was information withheld or heads turned the other way and no testing or therapy given. Her foster home parent said she was just acting out to get attention and refused to acknowledge that she had delays and autism as well as other mental and neurological disorders.  I was, in effect, blindsided by all this stuff.  But it is what it is. Maybe I can change it slowly and turn some of the negative into positive over time, but it is going to take work, a lot of hard, hard work.  My snowflake deserves it.  She deserves someone who believes in her and lifts her up, not tears her down.  She deserves the very best I can give her, not my defeated, want to give up attitude that comes over me every now and again.  She deserves no less than my best in advocating for her and in parenting her.  I have to get past the grief and the guilt and adjust my sails according to the course that is set instead of fighting the storm and the course I wanted to go on.  I am sure that when I do that, life will be less complicated and I will be able to build my snowflake up and will be able to find more positive than negative. I have to parent very intentionally and very intentionally I promise myself and her, I will parent.

Puberty and the Mentally Impaired and Autistic Child

Imagine with me a  5 year-old child trapped in a growing 11 year-old body. It is a little twisted, isn’t it?  It is even harder to handle, to parent, to be in the same room with many days.  My snowflake has yet another facet to her flake and it is not a pretty facet.  She is rapidly growing and developing and has hit puberty full force.  I cannot imagine how hard it must be for her to be developmentally in her abilities and emotions at a 5 year-old level but be 11 years of age. My brain does not work that way. I have tried to make it, but it still won’t go there.  All I do know is that my sweet snowflake has turned into a well, I have no nice words for it.  I don’t even have a word that aptly describes it, to be honest.

My sweet, lovable child has been replaced with a jealous, defiant, angry, hateful child. The only time she is happy is when she is doing what she wants and no one is around her.  When her sister is around and the snowflake is not getting from her sister what she wants, her temper tantrums are exactly like a naughty 4/5 year-old would thrown, maybe even worse.  I certainly hope this is not the way it will be for the next 7 years. I don’t know if I can endure it without needing medication! The bad part is she is like this on medication. I cannot imagine, nor do I want to, how much worse she would be without medication.

From everything I have read and heard, this should get better and won’t last and it is normal. It is like a 5 year-old child going through puberty and they do not have the ability to comprehend the onslaught of emotions, feelings and other things experience during puberty. It is a mind blowing experience for both of us, I suppose. No more that I can be in her brain and understand how weird the world seems to be to her and I cannot understand, neither can she understand my predicament of looking at a growing child who is almost 5′ and development of a young teenager (even though she is not even 11 years-old yet) and remember that her behavior is that of a 4/5 year-old and that is exactly where she is neurologically.  It is so hard for me to look at her and keep these things in context while disciplining her, keeping in mind 5 year-old, 5 year-old, 5 year-old.

While there are some experiences of this journey I wouldn’t trade for anything, this particular experience I would  not even wish on my worst enemy.  If any of you out in blog land have any advice for me to help me through this, I am all ears.  I do not love my little snowflake any less. Make sure you know that.  I just find her more challenging than ever before. But, I have never been one to run from a challenge. The more challenging it is, the harder I fight. So, even though I feel like this challenge may have backed me in a corner, I WILL find my footing and come back out with more compassion and love and fighting with all I have to maintain my composure and my sanity and giving her all the love that I have to give.

The Similie

My Snowflake

The title of my blog is the The Simile of Autism and Snowflakes and tonight I am seeing anew the snowflake.

I wish I could say I was feeling the snowflake in a positive light, but today is just not going to be one of those days.  The snowflake actually feels like a huge ball of snowflakes that have steamrolled over me.

Testing has showed that my daughter is without question moderately cognitively impaired.  I don’t know why that facet of the snowflake out of all the other facets such as, autism, sensory processing disorder, auditory processing disorder, severe short term memory, PTSD, depression, severe anxiety, seizures, etc., seems to be more weighty than the others, but it is a heavy burden.

I guess the reason it seems so weighty is that there is no therapy way out or way to improvement that I know.  If knowledge is power, at this point I am inept because I know no way of helping this facet of her life. I know no way of improving it.  All I know is that I have a child, an almost 11 year old child that is about 5′ tall and developing quickly and she operates about half her age.  Even though she has improved in reading and math this year in leaps and bounds, she has improved little anywhere else.  Don’t get me wrong. I am extremely excited about the progress in those two subjects. They are more necessary than science and history when it comes to independent living skills.  But I guess that is what bothers me.  What kind of life will she have? How will she ever be able to live independently? How will I be able to live doing everything for her for the rest of my life and who will care for her when I am gone?  Could I ever be able to move her to a group home?  These are heavy burdens and heavy thoughts.  When I adopted her, I had no idea that I would be given a beautiful, complex snowflake. Parents don’t know even with biological children what they will get.  I do not regret adopting her or her sister. If I could go back and change it knowing what I know today, would I adopt them? I can say I would have given it longer thought and being single these things would have troubled me, but I would not have changed my mind because I was ignorant of the challenges I would face as a parent of a special needs child. I believed I could take on the world and believe me, I have and most of the time, I have won.  I was ignorant of the fact that my life would become isolated and I would feel for the most part that friends, true friends, were few and far between because they were scared of my snowflake interacting with their children.  I was ignorant of the cruelty of people and the fact that some friends would turn their backs on me and my children as though we had the plague.

But, whatever, to all of that.  Those things are minor to the heavy questions that trouble my mind and heart tonight.  I just want the best for my beautiful snowflake and I feel so helpless, and wondering  just how effective any therapy I can get on my own  for her will be effective.  The school has ruled out therapy because in their opinion, she is never going to change regardless of what therapy she gets. She is just…are they right? Is it never going to change and these questions going to demand answers?

What a complex, beautiful, challenging snowflake.

Disappointment

“Mom, can I go out and play?”

She has a beautiful wooden swing set and lookout place, slide and sandbox.

Sure, go outside and play.

Eventually, I look out the window and check on her.

She has two sticks in her hand just talking away.

She is in her own world.

She doesn’t care about the swing-set today.

She used to until someone found a bug in the play phone up there.

I thought she would forget.

The swing-set sits silent  and unused and the commonly found sticks worth gold to her.

Why?

Why does it even bother me? After all, she is outdoors, safely enclosed in the large yard.

She is happy.

She is loved.

She is safe.

Why can’t I accept her in her world?

But she is in her own world.

But I want her to be in my world. I want her to be present, not absent from me.

There is only one word for this. Just one.

Disappointment.

This is Our Autism

hanging with her nuerotypical best friend before her dance recital for Special Kids in Action

April is Autism Awareness Month and this week is Special Education Week. This post is about OUR autism and OUR special education.

Autism is labeled Autism Spectrum Disorder.  This means that no two kids are alike when it comes to autism.  Criteria have to be met to be placed on the spectrum, but it is like being in a rainbow.  There are specific colors in a rainbow but also colors made up of a combination of colors.

Some of the most common comments I receive when I choose to tell someone that she is autistic are “well she talks” or “she will look at people” as if those are the only criteria for being autistic.  Yes, she talks and she sometimes looks at people and yes, she is still autistic.  She is not severely autistic, but she is severe enough that autism affects our daily life.  She talks, but she did not talk until she was about 4 years of age.  She did not give eye contact until recently after several years of working on it.  She can talk but to actually carry on a single conversation is a challenge because, you see, she does not understand language. She does not understand most words and what they mean.  She has meltdowns if she looses her favorite object that has become the object of obsession for that moment or she has meltdowns for no apparent reason at all, though, if she were able to communicate, the reason is very specific.  There are many things that put her in meltdown mode.  By meltdown, I mean severe anxiety, uncontrollable crying, inability to console herself of be consoled, self-injury and a number of other behaviors that come in any combination.  Because she often cannot communicate her feelings, she is overly anxious, shuts down, tantrums or self-injures.  Most of the time, she cannot understands another person’s body language or non-verbal cues, nor does she understand the feelings of other people.  She copies the behavior of those around her because she has no idea how to function otherwise.  I call her older sister “Pete” and the Snowflake “Repeat” because whatever the Music Box does, the Snowflake immediately copies to the extreme.  Some of the things her sister says or does are things I certainly do not want the Snowflake to copy.  The Snowflake is VERY literal.  So, sarcasm and figures of speech and humor are lost on her and often a bad thing to use with her because she takes them so literally.   She has no self-control, although it is something we are working on very hard. She takes any accident or behavior she doesn’t like very personally which sends her into a meltdown.  It is hard for her to form real friendships, although, she is getting better at it.  However, she does not really understand the concept of a friendship.  To her, if you give her something, you are then her friend. She is unable to initiate behavior to form a friendship.  The Snowflake only understands her viewpoint and cannot grasp the other person’s viewpoint.  Because she does not understand a lot of language, she has learned to just nod her head, giving the other person the impression she understands because she doesn’t know how to communicate that she does not have a clue what is being said.  There are only certain toys she will play with and her playing is not a typical child’s play.  She obsesses over certain objects and loves anything that moves, sparkles, glitters or lights up.  She is developmentally delayed so she operates on a 4-5 year old level even though she is 10.  We have to operate on a strict routine or she stays confused and out of sync. Her anxiety is high when out of routine.  Even though she does not flap her arms, she will sometimes rock, twirl, obsessively rub her fingers together, she hums constantly, and finds semi-loud noises or a multitude of noise unbearable to the point of having to use headphones or to concentrate, or she will start screaming at the person or object causing the noise, put her hands over her ears and run away.  She has no concept of time or space.  She has no stranger danger.  She often wanders away and if I am not diligent, she will get lost because she has no sense of direction and severe short-term memory loss, so she doesn’t remember where she was before she wandered off.  She does not adapt to new places or situations easily making transition from one place to another or one activity to another a big struggle.  She has seizures (common in autistic children).  She needs full-time supervision.  She does not feel pain, unless someone accidentally touches her and then it is over dramatized.  She has major sensory issues meaning that she cannot stand the feelings of many textures, touches, fabrics, lack of fabric, tags, and so on.  The Snowflake’s bedroom is the only room in the house that has a beautiful wood floor, but rugs have to be put down because she says the wood “burns” her feet.  She has messed up sleep patterns. She has strange fixations on certain objects or anything negative, dark or brooding.  Day to day life is a challenge for her and as a result for the whole family. Our world operates around her world. It has to.  We cannot operate like a “normal” family. We cannot just pick up and go anywhere. Everything is a challenge and everything is complicated, even fun activities or vacations.

Maybe this post seems rambling or chaotic. That is our life. Chaotic.  No two days are the same.  There are some behaviors that are consistent, but most of the time I never know what a day will bring, how she will react to any one thing. Her behavior often varies with how tired she is, what subject her mind is obsessing over, seizure activity and so on. There is no cure, there is no way to fix it. Our house operates around autism and its restrictions.  Maybe I didn’t explain this very well, but I am still learning what behavior is related to what limitation. I am still overwhelmed by the newness of everything. Life is complicated and overwhelming.  This is our autism.

Our special education means that she has to be in a self-contained classroom where she has a individualized education plan based around her strengths and weaknesses educationally.  Because the school is only verbally looking out for the “best interest of the child” her services that she needs such as occupational therapy, physical therapy, speech/language therapy, etc., she does not receive because in all actuality, the school is more interested in the bottom line financially than the best interest of the child. The special education department makes the parent fight for every service and puts a strain and added stress and pressure on the involved parent to get the required services.  In my case, I have had to fight for everything for two years now, have taken on school district to the brink of court and they were found at fault by the State Education Dept. and now I am at the crossroads of taking the second school district to court.  It is maddening that the school isn’t really interested in giving children, like mine, the best education possible. They are just giving them a spot in the school because that is required by law.  I, in fact, had one teacher tell me that the only reason some of the kids were allowed in the school was because they were prohibited from baring them from the school.  My child’s needs are held hostage by the school district because in this state, if the school does not provide the various therapies, then no one else feels obliged to give her the services either and her insurance won’t pay, so I am stuck paying out of pocket for therapies the school district should be giving her.  This is our special education…and education that is far below what it should be and adds even more stress and frustration to an already frustrating and stressful life.

There is a positive side to all of this, though. I live in a world that has broadened my horizons, made me a more compassionate, less judgmental person.  It has given me a love and passion I did not know I could possess.  It has helped me focus on the important things in my life, and loose the tight grip perfectionism has had on me (it still does, just not as extreme).  My life is never dull or boring and I learn new things every day and I am a better person and a better parent through the things that this world has taught me.

Is it tough? You betcha! Is it worth it? Absolutely even though the really tough days make me wonder sometimes.  I know that I learn so much from the Snowflake and Music Box. They are my teachers and I know God knew I needed them just as much or more than they needed me.

Thank you, God, for the unexpected gifts you have given me in the way of two beautiful children in a very difficult world.  Thank you for the opportunity to learn so much from them. Help me to be a parent they are deserving of. Amen

Ranch Day

Today was an amazing day.  The Snowflake, Music Box and I went out to one of the most healing places that has ever come into our path.  Hopewell Ranch serves children who have been hurt inside and out or have physical limitations and special needs.  When I heard about this place a year ago, it was a Godsend and literally, I believe, helped keep our family together and the adoption from being disrupted.  I still had not figured out what was wrong with my Snowflake and communication was almost non-existent.  On top of that, the Music Box was having a struggle bonding with me, understandably.  I happened to hear about the ranch on a radio station that we regularly listen to and I immediately made a call to find out if I could get my girls into the ranch. I knew very little about the ranch, but I knew it was a Godsend and where we needed to go.  Last year was so fun. The girls looked forward to every Friday and on the way home, the girls were so peaceful and it was like going on a mini-vacation for me.  My Snowflake had to be watched all the time and the Music Box was not very comfortable being on her own around the ranch, but they participated in Equine Therapy Sessions and an occasional Equine Assisted Psychotherapy (EAP) sessions.  This therapy and just the time at the ranch was so calming for all three of us, gave me a break, to some extent, from the girls and was more successful than any other therapy that we had tried.  It literally saved our family.  Due to circumstances, the weather, and living about an hour-and-a- half away, we have not been out to the ranch since November.  Today was the free day that we had in our spring break and we were graciously allowed to spend our spring break day at the ranch. I saw so many differences in my girls and myself from last year.

Last year, I had to keep an eye on my little Snowflake all the time and make sure she was safe and the animals were safe.  She was excited but a bit nervous around the horses.  The Music Box liked being with the animals but often was sullen and would not participate in things other than what she was prodded to do.

Today, I rarely saw my Snowflake.  The girls both immediately bonded with the horses and it was like there had been no time that had passed since they had been to the ranch.  Both girls loved on the horses, groomed the horses and helped remove their winter coats, played with the dogs, cats, goats and rabbits.  The loved on the horses and talked to them, especially my favorite horse named Chebar.  I love Chebar because she has struggles like I do with her health and her eyes often have tears in them. I haven’t had a chance to talk to her enough to find out the source of the tears, but I suspect she will tell me before too long.  In case you think I have completely lost my senses, animals do talk, just spend some time with them.  Anyway, my Snowflake always asked permission to go somewhere, but had no fear and spent the entire day running all over the ranch with other girls she has not seen in several months.  She had no problem keeping up and I heard no complaints about trouble communicating with the girls. Even more amazing was that she was with 3 girls usually and that, on a good day is more than she can handle.  It didn’t seem to be that way today.  She ran with them, attempted to communicate with them and had an absolute blast.  Today was more than a day of healing. Today was a day of progression; a day showing me just how far we had come since that desperate call I made last spring.  Today was relaxing and beautiful. It was a beautiful day weather-wise, but that is not what I mean. It was a beautiful day observing the growth and changes that took place since last spring and I cannot wait to see what this season has in store for us.  I encourage anyone that has not tried equine therapy to find a place and give it a try. It has done miracles for us.  It has strengthened my Snowflakes short-term memory and has served as major effective occupational therapy.  For the Music Box, it has given her confidence, balance and a therapy that has been found nowhere else.  For me, it has brought healing to my family and acted as a healing balm to my soul.  What more could I ask for?

 

We LOVE HopeWell Ranch

The Snowflake lovingly grooming and being loved on by her favorite horse at the ranch