Words he didn’t say

Many times I tried to understand my son. I cried to hear him speak and then he spoke, but the words still did not bring clarity to me or my family.  After a year and a half of my lil man using words to communicate we have finally started to understand his meanings, not always but most of the time. We know when he says “so and so was bad to me” it means someone hurt his feelings or didn’t give him what he wanted. We know when he says “i no get no food” it means he is hungry. But the world does not know these things. The world does not understand the way he communicates. 

The world just doesn’t understand. 

Even though I do understand there are many things I still do not understand. 

I want to understand!

Today I got my chance to understand. I should have known … but I didn’t. I’m his mom and I did not know. How is it that a mom just did not know what her child was trying to say for so long. 

I missed it …

We were outside today playing, he invaded my bubble. He just wanted a hug but he came into my bubble. I know this sounds horrible, but it’s the truth. At the time I couldn’t have anyone in my bubble. I took a deep breath and gave him a hug. Then I went to tickle him. 

I learned something new today.

He said oww, he pulled away, he walked over to a tree and sat down with his head hidden in his arms.  How did I not know that tickling him hurt. How did I not understand that for his mind and body tickling is painful. 

I feel helpless

I gave him his space, let him regulate and then went to pick him up. He let me wrap my arms around him and make it better. He needed me to understand, he needed to have that moment. Afterwords he told me he doesn’t know why it hurts, but it does. It makes him feel bad when he is tickled. 

I understand …. mommy understands … you are not alone

 

 

The change we need

So I just got home from a very long day. Lil girl had her eval, posted about all of that earlier, then had school. So here is the thing I am extremely happy to find that lil girl’s intelligence is through the roof. Here is my struggle, she is one to two points too high for other services. They recommended that I go back to my pediatrician and request referrals for private evaluations for speech and OT. She attempted to line up every toy they gave her, but the examiner stopped her. When this was pointed out I was told that it’s okay because she was lining up colors.
When I pointed out that she imitated everything the evaluated did including the words that went with drawing a circle (examiner said “circle, circle, circle” while drawing a circle … lil girl with a crayon in her right hand still coloring took the lady’s crayon and drew her circle over the lady’s saying “circle circle circle”) I was told that is what they wanted her to do.

I was told that her intelligibility is not a concern at 34 months old, because she gets her point across with her limited vocab and through hit or miss pointing. She is understood enough for them to consider it “acceptable”

I was told that i need to work harder at getting her to use a fork and spoon when eating because she has a great grasp for coloring. I try with the fork and spoon but I am sick and tired of being hit by the fork thrown at my head. That is what happens if I have her use a fork. But if I don’t give her one on her plate I have her food thrown at me in frustration.

She is potty trained to an extent. She will not go to the bathroom on her own. She would rather wet herself before going alone. Other times she will simply pee where she is sitting/or standing without regard to the need to go.

She socializes with adults, but not peers. Her socialization was scored low because of this. They don’t know what to recommend because I already have her in preschool part time, and take her to the park and other venues where she can interact with children her age. She just wont.

The evaluated told me “She has no regard for danger.” This was not a question, this was a statement from watching her stand on the chair and not care that she was falling off of it. This was watching her do it again and again with the same results. This was her sticking her hand in my hot coffee without regard to it being hot.

She can not show the difference between a boy and the boys when shown a picture.

Yet I am left with the statement “We are sorry she does not qualify for services, you must go back to you doctor and request private evaluations. Or you can wait until she is three and go through Child Find”

You see here is a child who has dx of developmental delay. She is high functioning, yet too high functioning to actually receive help. This is where the divide in our community comes in. High Functioning vs Low Functioning … we each battle our own demons. We fight the same fight. If we were to band together and raise our voice as a unified community how different would our world be? How much could we change if we looked at it from all sides of the table?

Having a high functioning child is kind of a double edged sword. You know your loved one struggles yet you are not eligible for services. Having a low functioning child is not any better. Your loved one requires more help for their struggles than our system provides.

When will we demand a change for our loved ones? when will we be given the chance to give them the best life regardless of their functioning level? When will we see, within our own community, that our end goal is the same? That all we want is what is best for our loved one?

What Do you know about ….

Today is world suicide prevention day. This fact was brought to my attention by another Facebook page. The owner of this page, Spinning Cars and Flying Horses Autism Bipolar Adventure, bared her soul for all of Facebook to see. She asked if anyone had a story to share to message the page if you wanted to share your story anonymously.

SUICIDE … 

A taboo subject. No one wants to talk about it, even less want to admit that their life has been changed because of it. Yet it is a problem we must face in our world. Each year we hear more and more accounts of suicide. Many times it is teens we hear about due to bullying. Or murder/suicides. What we don’t hear are personal accounts of those nameless/faceless individuals that have attempted suicide. We don’t hear what brought them to this point, or how they managed to come back from a failed attempt.

 

Here is my story, not something I have shared many times before. I am putting it out there for the world to see, for the world to understand that Suicide is something that needs to be talked about in order to prevent more lives from ending when help can be given.

 

All through out my life I felt different, I didn’t fit in. I did not feel this world was the one I was meant to be in. Even my poetry expressed those thoughts and feelings from the time I was 12. At the age of fourteen I raped. I felt ashamed, dirty and some how responsible for this. I didn’t pick this, but like many rape victims I felt it was my fault that I cause it. I did not speak a word of it to anyone. The few friends I had were lost and things got worse. Fast forward three years, I was 17. I was isolating from the world. I was mean and angry. Then I was happy as could be and nothing could stop me. Those “ups’ were the most dangerous times in my life. My cutting became worse and the jackets and long sleeves were a daily occurrence for me. I had a teacher who saw the signs and refereed me out to the school psychologist, I was labeled … I saw the therapist, I told them what they wanted to hear and then I was caught. On our last session provided by the county I was asked to take of my jacket. I was sent to a psychiatrist where I was diagnosed with bipolar disorder, PTSD, Severe social anxiety, phsycosis, ADHD, and many more things. I couldn’t take it anymore. In April of 2001 I tried to end my life. I took as many pills as I could find in my house and then went to sleep. My sister blamed herself, she had no clue that the pills I had were intended to end my life, she wasn’t to blame. Sadly this would not be my last attempt. I had several more failed attempts … more a cry for help. My final attempt to take my life was nearly successful. In 2003 I lost my mother-in-law to multiple organ failure and my uncle lost his battle to AIDS, my family thought the best way to handle my psychosis was through a religious ceremony (in other words a form of an exorcism). I was done. I was sick of being a burden on everyone’s life. I quickly and quietly took 50 pills of depakote ER at 500 mg each. I did not say a word to anyone. My hubby noticed something was wrong and that I was in a room behind a closed door. He quickly called 911, I was transported to the ER, had my stomach pumped and spent 4 days in the ICU until my blood levels came out of the dangerously toxic levels. I was put on a 72 hour hold once I left the ICU. That day something changed, I checked myself into an intensive residential program and f or the next 30 days I worked the program, I wanted the change. Since that day I have not attempted to take my life. I still battle with this daily. I still cut, sometimes worse than others. I have scars I can not explain and a mind that does not work they way it should. Each day is a battle, but it is one I fight because my family means more to me than anything else. I could not imagine leaving my three beautiful children to have to understand why their mommy left them.

To my little advocate

Dear Gabriella,

This time seven years ago I was wobbling my way to the hospital to give birth to you. I couldn’t wait to meet you and hold you in my arms. I had a million and one plans for you life. Such a silly mom I was. I had your certain things in mind that I wanted for you. I was your typical first time mom, I thought I knew it all.

After a normal delivery I was handed my beautiful healthy daughter. In those moments after you were born I could not imagine loving another human being as much as I loved you.

I had to learn a whole new way of living. I could no longer focus on only myself, I had you to worry about. I loved every minute of being a new mom. I learned all the new things a mommy should learn. When you got your first high fever I frantically called my mom and when she told me I didn’t have to rush you to the hospital I told her she was wrong. I mean I was the new mom of a beautiful three-month and she was the mom of your 23-year-old mom and her 17-year-old sister.

A year later I watched you meet the milestones that all parents wait for. You were walking and babbling. In my eyes you were perfect as we celebrated your first birthday.

I was now the proud parent of a toddler. You were no longer a baby, but not really grown up either. I missed the days when you sat still and would fall asleep on my chest. We were now at the baby proof the entire house. Some one should have had me put a lock on the toilet. I remember on Christmas morning that year after you turned one, you took my cell phone and dunked it into the toilet. I guess it needed to be cleaned.  This year in your life would bring another round of firsts. You not only were walking, but also running. You still babbled but also started talking. This was the year you would become a big sister as well.

 You met your brother just 21 days after you turned two. Even at two you became this little mommy. Whenever your brother needed something, you wanted to be right there to make it better.

We took you to Disney for your birthday the year you turned three. You see you have always been my little princess and I wanted to give you the royal treatment that year. So we packed up you and your brother and off we went for a birthday I thought you would love. I booked you an appointment to have a royal make over in Disney no less. They did your hair and make up to match the Cinderella dress. You even got to open the World of Disney store on your special day. You were the ultimate princess for the day. 

It wasn’t long after this birthday that things started to change in our home. Your brother was turning one that same year. There were so many things he did not do yet that you had done by that age. He had just started crawling at the age of one, didn’t walk until he was over a year and a half, and wasn’t talking. He started living in his own world.  This year was hard on us, but we didn’t let it stop our family from doing what we do best: taking care of you and your brother.

Your third year of life brought you into the world of dance as you began ballet and tap dance. You were the true meaning of a prima ballerina.

Over the years, We have watched you grow into this amazing lady. You are a a natural care taker. No matter where we are in life you have and will always be there to take care of anyone who needs it. Especially your brother and sister.

Today on your 7th birthday, I celebrate you and the wonder you have brought to my life and the lives of every person you come in contact with.

Happy birthday my sweet sweet princess.

Love always,

Mommy