Choices

Do you ever have days where you just don’t feel like you’re doing enough as a parent? That some how you are failing your kids?
I know I have those days. In an attempt to not run and hide from everything when my life gets rocky I’m here to admit that I am having that kind of day.

I haven’t been totally honest with myself. I came off my meds for my Bipolar Disorder, I stopped taking my anxiety meds and my ADHD meds. I didn’t want a life on pills to be “normal.” But what is normal? Is it this feeling of failing my children at every turn for my want of not taking a couple of pills each day? Is normal not wanting to engage in life and slowly start slipping into a black hole? Why is it that I can make the decision to stop taking meds that will allow me to function, yet I can make the decision to medicate my 4 year old daughter so that she has a fighting chance in life? That is a contradiction if I have ever seen one.

I am making bad choices for myself at the expense of those that depend on me.

Yup, I feel like I’m failing my kids and myself today, actually this whole week. This post isn’t about attention seeking, rather admitting that I am human and that I can feel defeated.

Tomorrow is a new day. I will wake up and work towards being better version of myself that knows that sometimes there will be set backs and all I can do is try to make the day better than the one before it.Honestly that’s the best any of us can do.

See that is the scary part of dealing with complex needs in one house. My children depend on me, yet I am allowing my bipolar disorder and lack of wanting medications to determine how “good” of a parent I can be. Tomorrow I will take my meds, tomorrow I will call my doctor and be seen to get refills so that I can be a “good” mom, wife, and person again. Not for the sake of being “Normal” but for the sake of feeling like I can do it again. For the sake of being able to help my children who need me more than they can even begin to express.

Life happens, we make decisions both good and bad. The only thing we can do is learn from our decisions and work to make life better than it was the day before. It is up to me to change this path I am heading down. It is up to me to be there for my family and myself even when I don’t feel the best.

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This is me

Imagine a world where nothing matters, you could do anything. You thought you were invincible. Money could be spent without a thought to how the bills would be paid. Imagine a world where you were the best at everything and you needed very little sleep to get things done.  This world sounds kind of nice doesn’t it?

 Well this is mania – it’s my mania to be exact. It also comes with some very dangerous side effects. That money that you spent, you needed it to pay your rent or buy formula for the baby.  The things I think I can do because I’m unstoppable, well they have consequences as well. Those things almost destroyed my marriage more than once.  This phase can last for a few hours to a month or more at a time for me. Then comes the next phase … I crash.

 I fall into a bottomless pit of depression. It’s dark, it’s scary and most of all it is real. I’m not talking about sit around and cry type of depression. Oh that would be a piece of cake compared to what I experience.  When I hit this depression personal care doesn’t matter. If someone didn’t tell me to take a shower or brush my teeth I probably wouldn’t. During this depression I am not a good mom, I do the bare minimum to make sure my children are taken care of. Not because I don’t want to take care of them, but because I can’t.

 The dark world of this depression hurts physically, mentally and emotionally. I’m not good enough for anyone. I can list all of my faults to an exact measurement, even if no one else can see them. It’s during these depressions that I truly believe that the world would be a better place without me. I know how much of a burden I am on my family, and honestly when I am depressed because of my bipolar lows I know in my heart of hearts that my family would be better off without having to constantly worry about me.  

 As scary as those low points sound, they really aren’t the worst of it. It’s when you cycle back up into mania that it becomes dangerous. All of those negative thoughts you have during depression you now have the motivation to do.

My bipolar disorder has had a major impact on my life. It has impacted my family and those around me. It has led my husband to watch me attempt suicide and have to call 911 to have me hospitalized.  My bipolar disorder has led to my mother to question what she did wrong. She has had to sit in a doctor’s office and be told that without medications I would continue this destructive path.

With medications, which need to be adjusted every so often, I can be somewhat stable. Even that isn’t perfect. I still slip into nasty depressions and scary manias. This is my bipolar disorder; this is part of our life for better or worse. 

Autism Speaks does not SPEAK for HIM OR HER OR ME

I have remained silent on the Call To Action published by Mrs. Suzanne Wright …. until now!

Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse.

These families are not living.

They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely – 24/7.

This is autism.

We are talking about the parents here. Let’s look at this realistically. It is true that many of us don’t sleep much. I know in this house sleep is a constant battle. Yes I worry every night that my children will wonder off from the security of their home, and because of that I make sure there are alarms on all doors and windows in the house. Isn’t that what a parent does? We keep our children safe no matter what it takes. That is not specific to autism, that is specific to being a parent of a child. Honestly my children stripping their clothes off are the least of my worries in the middle of this night. We are not just existing, we are living. OUR AUTISM has shown us a new way to look at the world. Our Autism is not the end all of our children’s life, it is a different path we take to ensure they succeed in the ways that they can.

I won’t sugar coat autism either. There are days I scream from the mountain tops that I FLIPPIN HATE what autism has taken from my child. Those days, days like today and the majority of this week SUCK, but that isn’t every day.

Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.

This is autism.

I live my life in the moment, not “moment-to-moment.” Actually we have schedule and a routine that we follow. It is pretty much the same thing every day, but never the same day. If one of my children need to adjust something in our schedule or change where we are going we do it. I do ask a lot of my children as they learn to cope with the NT world around them, but I also allow them to have a “get out of jail free” pass when it is too much. Does this mean my life is lived in despair? Not a chance in hell. Do I have days where I am sad, where I cry, and scream this is not fair? Most definitely. Do I fear the future? Sometimes. I worry that my child will not be able to take care of himself and wonder who will do it. Will his older sister take care of him, who will take care of my youngest if she can’t do it herself. That is part of autism or any developmental delay actually.

AUTISM SPEAKS DOES NOT SPEAK FOR OUR AUTISM! OUR AUTISM SPEAKS FOR ITSELF! 

I speak for my children, I speak for my students with their parents, and I will not allow anyone to say my child is missing. I will not stand quietly while Autism Speaks instills fear of my child into those around him.

Will you allow Autism Speaks to speak for you and your autism?

I have taken quotes from the original post at Autism Speaks. To read the full post please visit: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

Green Eyed Monster

I’d say we are all friends here. Here is where I share my biggest joys and happiness, it’s also where I share my fears and disappointments. Tonight I am going to do just that … Share.

I have been extremely happy with the progress little girl is making with her language. I’m over the moon and I am not in anyway negating the joy I have for this situation. But I am jealous. I’m jealous of the little girl who just turned two and is speaking in clear three word sentences. I am jealous of the kids in Lil girl’s preschool class that are younger than her. Those that don’t regress in their behaviors, those that clearly speak their wants and needs. I am jealous of those moms who understand their beautiful little child and don’t play guessing games as to what they want.

I am angry at myself for not understanding her all the time. I am angry at myself for not always knowing what my very verbal son wants. I am also jealous of those families that are not worrying about if their child will run off on them and disappear while trick or treating. I am jealous of that family that can go with their child and not have to have one adult per child because two of them may run off and end up in a lake or hit by a car or taken by a stranger. I am angry that I am jealous because my children are progressing and I watch them work hard to get to their best self. I am angry at being self centered when it is the kids who have to battle this battle daily and they are happy.

I am jealous and angry because my oldest needs more attention than I can give her because her brother and sister are always in need of something.

But most of all I am an emotional wreck that just wants what is best for all three of her children. I am an emotional wreck that wishes I was more grateful for the progress and growth and a little less resentful at the hand of cards my life has given me.

I am a human being and I am a mom …

A mom’s thoughts

We can’t always be on our game. We all have moments that we wish we had said something different or done something a different way. Tonight, well actually today, was my day. 

Little man had a rough day. His Speech Therapist had to cancel his session at the last minute. We were already at the school when she came out to tell us she was stuck in a meeting. He shut down. Lil man covered his eyes and pressed his face into the couch in the office of the school.  Normally he is pretty good about changes in routines. The exception to this is when I don’t have enough time to let him know of the change. 

Wishing for normal …

Of course, like many other children on the spectrum, this one upset in our day set the tone for the rest of the day. It was rough. I wish I could have taken a day off from the stress that this type of upset causes. 

Wishing for normal …

While we were walking out of the school the bell rang. Both little girl and lil man covered their ears. Lil Man stopped in the middle of the street, he froze while little girl ran in the middle of the street to escape the noise.  I am only one person. I need more hands to react to each of their needs. They both were bothered by the noise, but both of them reacted in completely different ways. 

Why can’t they regulate …

Wishing for normal …

To help ease the stress, I took them to get pancakes. They love their pancakes and it seemed like a good idea. Once we got home it was constant fighting. The two of them were physically hurting each other. It breaks my heart when it gets to this point. I don’t want to keep them away from one another. I want them to interact, but I also have a responsibility to each of them to keep them safe. Luckily they started to get along a little better after I was able to get them set up with an activity. 

Wishing for normal …

After lunch lil girl took a nap and lil man laid down with me for some cuddling. It was great, except he stimmed the whole time. Then someone decided to ring the doorbell. It’s not like it was a random person, the girl I tutor has been told not to ring the doorbell because it causes the dog to bark which makes the younger two cover their ears and screech. Yet she still rang the doorbell. 

Wishing for normal …

By the time hubby got home I was tired and stressed. I wanted to check out. I needed to clear my mind, but dinner needed to done and so did baths and bed. Luckily that part went smoothly. 

Finally something normal. 

Here is where I made my mistake … I voiced my thoughts. I said what no parent should ever say. I told hubby I just want a normal. I want out of this loop of melt downs and tantrums. I told him a normal child wouldn’t have their entire day thrown off because they didn’t go to speech. A normal child wouldn’t screech because someone laughed too loud in the car. A normal child would be able to function despite a change in their routine. 

I JUST WANT NORMAL

Then came the look. I hurt my family with my thoughts. My unvoiced demons came out. I can’t believe I did that. I know better, normal is a setting on a dryer. Or so they say … 

I have normal, our day is our normal. My son and youngest daughter struggle with the same things I struggle with. I can’t blame them for not being able to deal with last minute change. I can’t even deal with it. I however am 30 year old. I have had many years of practice to develop my coping skills that allow me to function in the “normal” world. 

My children are doing the best they can, and I needed to see that look on my husbands face to realize that no matter how much stress that this life brings us, it is our normal and my kids will learn to cope in their way in their own time. 

I have normal, We do function, We do regulate, We do the best we can. 

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?