The Spectrum

My husband’s son, my stepson, has autism.
He just turned 13.

His older son now 14, has several other diagnosed issues. (all of which in my observance are treatable with consistency and good discipline). But that is a story for another time.

When we met 3 years ago I was fearless when it came to my autistic stepson and his challenges. I saw him in a different light. His OCD’s intrigued me and the manner in which he participated isolated himself amazed me. He lived in a world all his own. I recall observing him when we first began dating. What could possibly be going on inside this boy, I would think to myself. I approached him without caution and spoke to him as if there was no handicap between us.

He is non-verbal.

I still recall a playful moment we shared when we first met, while he was doing something some autistic children do, called stimming. He watches videos, but often rewinds a particular part over and over again. While watching rewinding a video for the 5th time with various shapes and colors I stopped him. He looked at me with amazement as I began to speak to him about each color and shape. Afterward he would stop the video on the same segment and take my hand to retrace the shapes while I said the names of each one and told him what colors they were.

He smiled and looked directly into my eyes. This is not something he does often nor likes to do. Eye contact for autistic children can be hard to come by, but in this moment he was engaged, available, and willing to participate with me. Something we rarely see. I took for granted a small huge achievement in my stepson’s willingness to let me in. Now nearly three years later he has grown to tolerate me and I think may have even grown to resent me.

After several months of dating and observing how my then boyfriend now husband ran his household I saw a few things I wasn’t too fond of when it came to his child rearing skills, but this was a tricky sticky subject that I was fully aware had signs written all over it that read CAUTION! I had been married & divorced. I was in the dating pool for quite some time. I learned my lessons about trying to change people. It NEVER works. So I remained fairly quiet.

However our relationship took on a life of its own. We quickly fell for each other in ways neither of us expected and that meant I would have to face these issues or walk away.

The list of hair raising things that quickly began to irritate me were as follows.

  • Walks around from room to room in full control of each and every television, DVD player, and computer.
  • Rarely sat at kitchen table for meals.
  • No schedule, no rules, no accountability for actions that may or may not be appropriately acceptable for an autistic child, let alone a main stream child.
  • Regularly removed clothing and walked about the house without anything on.
  • Had no limits or boundaries to accessing food on his own. Would help himself to the refrigerator for juice only to empty the bottles down the drain, in the toilet, in pillows, or our computer’s keyboard.
  • Had access to father’s bedroom where they once co-slept when he was younger, but often shut his dad out of room to watch video projector on the wall, leaving him to sleep on the couch.
  • Writing on walls, furniture, other objects, and himself if left alone with markers or writing implements.

Need I go on???

Three years later we have an entirely different child. I could NOT hold my tongue. My experience as a professional nanny and mother gave way and I spoke about the sticky tricky situation and made my opinions heard. I demanded a schedule appropriately designed for his needs and hired someone qualified to help us get started.

Why? Not just because I loved my husband.

Not just because after telling my stepson “NO!” when he approached the refrigerator for the 5X in a day to attempt to dump yet another bottle of juice somewhere it didn’t belong and retaliated by biting me and hitting me so badly I remained shaken for hours afterward.

I did it because these behaviors baffled me and I saw a child caged by his own inner battles. I felt very strongly that he could participate more, sit down and be still for longer than 5 seconds, and I knew there was someone home even though he chose to keep the lights low with hopes we wouldn’t notice and would continue to allow him to fade further within himself.

It has been a constant battle since those first days. We chose to change things gradually, but did it with tough love and very little room for slack. We demanded eye contact, sitting at the table for all meals, we removed all electronics, distractions, and created an earning system in which he was rewarded for following directions.

His real mother had issues with the changes we made in our home. She claimed he had a tough enough day at school being asked to cooperate. She has vastly different ideals than I do when it comes to how her son with autism should be treated.

I get it. I didn’t wake up one day with my child having a label and a diagnosis. I do not walk in her shoes.

However the realities of this sweet boy being in the world without constant care and help are slim. I saw room for much needed alterations and I made them. For the love of my husband and for the love that began growing between his son and I on that very first day we made a connection.

We are not without days that I feel completely overwhelmed. We still have tantrums upon his arrival every other Friday night when he comes to visit. We still have split second moments when he may be left to his own devices only to empty an entire carton of eggs (although broken neatly and placed in a bowl) or when the entire container of newly purchased fish food winds up in the tank.

We are always learning.

We are coping.

Most importantly we are trying to understand the inner workings of a boy who does not speak and who prefers to slip away, while on the computer, endlessly watching videos on youtube.

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Wordless Wednesday: Brotherly love edition

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Loss of Love on Valentine’s Day

In 2001 loss came inevitably after my mom was diagnosed with stage 4 bone cancer.

The fear had come full circle. The breast cancer had metastasized.

We were devastated, but my mom was still willing to fight. Sadly after a long, hard, horrifically emotional battle she died.

I was only 28 years old.

This December marked the 10 year anniversary of her death. I experienced many seasons over those past 10 years. My life was remarkably different and the painful lessons that grew from her loss remain. Nothing in this life is permanent.

I grew closer and closer to my dad’s sister, my favorite aunt, my beloved mentor, my second mom. She was my safe haven, my listening ear, my shoulder to cry on, and so much more. She encouraged me to start this blog. She was to be my editor. A retired English teacher of 30 years, a Shakespearean scholar, a expert in word choice and grammar, a connoisseur of literature. She was the embodiment of dignity, grace, beauty, and strength to me.

Sadly. Unexpectedly. She collapsed on December 28, 2011 and never regained consciousness.

My editor, mentor, friend, my “person” to quote the word choice for Meredith and Christina’s relationship on Grey’s Anatomy is gone.

We were supposed to share this blogging experience together and I was looking forward to learning even more from her as I would start a journey of divulging my life, not just in a composition book, but in the virtual world. Sharing my heartache of loss, love, and silly stories about my life as a mom of five, who still crazily wants to have another one.

We agreed I would email her the pieces for editing and she would give me her honest opinion on content and of course check for grammatical errors.

My heart aches and my brain still cannot conceive the magnitude of yet another loss.

Another woman taken from my life way too soon.

I know its Valentine’s Day today and most of the stories posted today won’t have nearly this heavy of content, but there are those of us even on days specifically marked on our calendars chosen to endorse love, who will hurt today, like any other day. There will be people who mourn the loss of love that once filled their heart by a significant other, family member, or close friend.

Today I honor the love my Aunt had for her family as a devoted wife of 52 years, mother of 3, grandmother to 7, and “Aunt” to many.

Her life was filled with love & she will be missed.

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I need an outlet

I have been going to therapy on & off since my mother died in 2001, for various reasons.

Some obvious. Others not so obvious.

I have kept a journal my entire life and when I heard about blogging I was intrigued to say the least. It seemed intimidating to publish my thoughts, but I considered the feedback I would get as ‘therapy’ if you will. I welcome the feedback good or bad. Hell my therapist tells me when I am being an ass. It’s constructive criticism.

A while back I blogged about a situation with my ex-husband and his new wife. It was one of my first posts.

I have only created one blog about a recent situation that I encountered with them and have been hesitant to write more. I do not want this blog to turn into a rant against the obvious. I am a divorced woman who doesn’t get along with her ex-husband. Go figure. I often say we did not agree or get along when we were married so why would we get along now that we are divorced. We should just agree to disagree and call it a day.

The other day I started to write a new post and found it to be another post about something that happened once again with my ex-husband and his wife. I sat down at my computer after being awake all night and at 4 am composed another ranting blog about the craziness of my divorced life. I saved it to my drafts and went about my morning never actually going back over the draft or posting it.

It is almost a week later since that day and I have little desire to add it to publish the piece. However I am left feeling as if there are things I want to say or write about that may at times reference my struggles as a divorced woman. It is just not my style to bitch and complain about my life. I am not a martyr. I am not someone who sees the glass as half empty. I do not complain endlessly about my path in life. I do know that I am where I am today for a reason. I have come to be more understanding, more tolerant, and far more grateful for all that has happened in my life. Loss births understanding of ones strength in ways that isn’t fully understood while the event is fresh. Time trite as the saying goes, heals wounds or scabs them over enough to put things into a reasonable perspective.

So I am curious as to acceptable blog posts and if ranting gets you anywhere? How many posts have you started only to let them simmer on the back burner or you dashboard never to get published? Or how many have you posted that perhaps you wish you had considered at greater length before publishing?

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Wordless Wednesday Holiday Edition

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Divorce, Step-families, and more…

Divorce sucks.

When I got married at twenty-three, I can honestly say I did not envision my fairytale ending in a divorce.

I did not choose this. It chose me.

One night while I was cooking a meal of spanish rice and chicken (odd I would remember exactly what I was cooking, its been over 11 years) my husband, my once high school sweetheart, the man I knew since the sixth grade came home from work and while our children slept in the other room told me, ‘he no longer wanted this!’ 

I am not a quitter. I did not believe the grass would be greener on the other side.

I did not want out just to move on to something bigger and better.

It seems that choice was not mine to make, but a choice that was decided for me, in that moment by the stove, while chicken baked and rice simmered.

Life is not easy. Relationships are difficult. Having illusions of grandeur and expectations from another human being can be a short coming and at twenty-three I had many illusions, too many expectations and a pair of rose-colored glasses.

Since my ex-husband and I have divorced dealing with our children and custody issues has always been difficult. We have tried all sorts of schedules and arrangements. There are many things I wish I would have done differently regarding their care and well-being.

I made many mistakes and for that I know I am still feeling the pain. My therapist reminds me that if my frame of mind were clearer and I was in a healthier space back then that I would have made many decisions differently. I am still working on putting that into perspective.

We both met someone new & oddly enough remarried last summer, he in June and me in August. In September, after picking up my son’s for the weekend, my younger son told me that his dad and new wife were expecting twins. My husband and I too were pregnant, but hadn’t told anyone just yet because we had a miscarriage months before.

I don’t think I am difficult to deal with… clearly I have moved on… it has been over 10 years since we were married.

Perspective has shown me a very clear picture since my divorce.

However, I am not perfect, but I am not a person who likes confrontation so I deflect or avoid many topics when it comes to my sons just so I do not stir the murky water.

My son’s primarily live with their dad and his new wife. Several months before the babies were due, me in March and my ex-husband’s wife in May, we had a ‘friendly gathering’ to discuss some things.

One of the topics that came up for discussion was what the boys would now call their new step-parents since there would be new babies coming. My husband and I looked at each other and said we felt certain that the boys should continue to call their step-dad by his first name and if they felt comfortable enough to call him something other than that, it would be up to them.

My ex-husband and his new wife did not agree with us and proceeded to explain that the boys would now call their new step-mom, mom. It would not be something the boys would choose, however it would be a requirement. They would be told to do so and not asked how they felt about it or what they wanted. The reason… was that she felt since the boys called her by her first name that her new babies would hear this and call her by her first name too.

I didn’t have many words at this meeting. Only feelings of sadness and confusion. I am their mother…I don’t discount that they have a step-mom, who takes care of them and loves them but….

she is not their mother I am.

So I have my opinion about this topic, but would love to hear some opinions and thoughts about how you would feel. Should they call their step-mom, mom? How would you feel if this was happening to you? Would you want your children to call another woman mom? Should children make this decision on their own? or be made to do so  because younger siblings will be added to the family?

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Oh the things people say… like it or not

My daughter is almost 5 months old. She has a sweet disposition and is usually happy with a huge gummy grin to prove it. She is the first girl in a family of four boys and we think she is the cat’s pajamas, after all we are her parents.

When I am out and about doing daily errands or perhaps just out for a stroll we rarely escape a comment or two from a passerby, after all everyone loves a sweet new baby. Usually the comments are about her full head of hair, pretty blue eyes, or her big smile accompanied by two dimples that attract an outpouring of love and attention. But all too often I hear “my what a big girl,” or “she is so fat,” or “she doesn’t miss many meals does she?”

Lately I have allowed my sensitivity to get the better of me when people comment about her size. Even my own family and friends have been known to make an off colored remark that immediately has me defending her and myself for the fact that she is breast-fed and not on a schedule.

This is not my first go round at defending the way I choose to feed my children and I still don’t feel it necessary to get on a soap box and preach my opinions on breast milk vs. formula. I choose to breast feed not just because of the wonderful benefits it provides for my daughter, but because it comes naturally and easily to me. I am blessed and fortunate to have such a pleasant experience with all my children. I know there are stories out there that are quite the opposite, but this is my story.

It is my choice and my preference that is all.

I just wish I was given the same respect and not judged on my decision to do so.However sometimes I just want to scream when people ask me such questions or make such statements as… “How do you know if she is getting enough?” or “Don’t you think you are feeding her too much?” or “Don’t you think she needs ‘real’ food?”

Ugh!

My sweet little flower is a new baby. She may not totally understand the rude unsolicited comments that are coming her way at this point in time and I know all too soon that one day she will, however while she is small and still a bit delicate I ask that you refrain from commenting at all… if by chance you can’t say something nice. I don’t comment on your weight or if you’ve eaten enough today or if you eat ‘real’ food vs. junk food.

So perhaps if by chance you run into us while we are out and about and you want to add your two cents on her blue eyes, full head of hair, or the dimples in her cheeks when smiles at you, go ahead we love the attention. However, if it has to do with her size and she is in fact “pleasingly plump,” as we love to call her, we prefer you keep your comments to yourself and keep on walking.

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