You’re going to do WHAT?!?

My family has dealt with our fair share of death in the last 6 months. In January our grandmother died, 6 months later my Sister-In-Law lost her husband. When you are left to make the final arrangements for those you love or help those you love make final arrangements for their husband, it’s hard not to think about your final plans.

I had a very honest discussion with my husband and told him my wishes. We made sure that we discussed what would happen with all of our kids, but more specifically Lil Man and Lil Girl. You see the reality is is that there is a big chance that my younger two children will not be able to live on their own. They may need support for the rest of their lives. Should I expect that my oldest child (barring that she is of legal age) be responsible for her siblings that are 2 and 4 years younger than her? Should I demand that she be their caregiver and have to give up her dreams and ambitions in life? These are just a few of the questions that we have to face as a special needs family when it comes to planning for life.

Call it selfish, but I refuse to demand that my oldest child give up her life goals. If she wants to make that choice she can, but I will not force it. The reality is there may come a point, even before I die, that my younger two children may need to go into a residential program. That day is not today, but it may come in the future. We have started planning for this. We have applied for the MedWaiver, since the waitlist is well over a ten year wait. We have our letter of intent written, and will be starting a special needs trust fund in the near future. None of this is easy to talk about, but if we don’t what will happen to our children when we are no longer here to care for them.

With all the death that has surrounded our family lately we have also filled in family members on our wishes. They need to know. They need to have a game plan in mind should something happen to me and my husband. It sucks to do it, but it has to be done.

In explaining our choices to one family member, I was damn near shammed for my decision. I was told I shouldn’t be allowed to just “ship” my kids off to some unknown group home for them to live away from family.

You see, I didn’t come to my choices lightly. I didn’t wake up one morning and say “Hey I think I will just stop caring for my kids” None of us do.  We fight long hard battles, we fight with ourselves, we question ourselves, we even end up with the bruises to show for those fights. No one, even family members, has the right to try to make us feel bad about what plans we have put into place for our children. They do not live our life, they are simply the visitors who pass through it occasionally.

When I made my choices, I knew they were subject to change based on my children’s current levels of need. I will not back down from my choices, I will not defend them to people who do not live my life. I will stand by my choices and change them as our needs change.

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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.

DENIED …

Today I sat through yet another IEP meeting for yet another one of my kids. We did the full out thing, they didn’t tell me anything I didn’t already expect walking into the meeting. 

They indicated that Lil Girl has a significant difference between her scores in the area of attention and memory from those in logic and reasoning. Reasoning and logic are her strengths. Due to her strengths in this area she scored high in cognitive, which denied her services in this area. 

Then they told me all about her personal – social behaviors. Here they spoke of how she is affectionate with family members and other adults. They did not show that it took her about 10 – 15 minutes to warm up to the evaluator that was playing with her. They talked about how she will sometimes allow adults to join her activities. They acknowledge that she does not like to help adults in the house, and that she is aware of other children, but does not interact directly with them. They say she can say her first and last name, but that she not respond correctly called by her name. Now here is the fun part because up until now it’s all clinical data … Lil girl LOVES playing in the kitchen.  She will give bowls of food and feed her babies. But the data is a little well … incorrect. They say she will initiate socialization with her peers. THAT IS BULLSHIT! She does not care about the kids in her class. She is happier playing by herself and gets very irritable when other children mess up her play. I CALL BULLSHIT! Oh and she is aware of gender differences, because you know boys have a penis. Yup she went there. God do I love the things that come out of my kiddo’s mouths. Again they state that there is a significant difference between her score of self-concept and that of peer social skill development. 

 

Her adaptive skills scored low as she still needs assistance with many tasks a 3 year old should be able to do, like undress themselves and always use utensils when eating, petting animals gently and not eloping. 

Her communication scored high because she uses gestures to get her point across and understand a lot of what is being said to her.  In other words, she makes herself and her needs known one way or the other. Her speech however is completely unintelligible. 

So what does all of this mean? Simply stated … her attention and memory issues are not a problem because her logic and reasoning skills are so high. However there has been a large decline in those since her Early Steps screening (about 15-20 points). Her adaptive skills are 5 points too high and her social skills are 2 points to high. These two areas being too high by a few points have denied her services for developmental delay. They have indicated that she has a severe phonological impairment that impacts her ability to make her needs and wants known. So for now she is being placed in a 2 1/2 a day program that will be language and speech intensive. 

While I am happy that she is getting intensive speech from the district, I feel lost because she had a really good testing day. It was one great day out of so many bad days that we go through. Now it is time to start working her therapy myself, like I had to do for me and for my son. While she scored anywhere form 2-5 points too high for the additional services, I will not let my child fall victim to a system that is too overworked and too finically stressed. My daughter will not fall through the cracks. She will succeed in her own way at her own pace. 

“Autism on the Rise”

Yesterday Autism was a buzz word again with news reports following the release of new statistics regarding the prevalence of autism in our society. The CDC (Center for Disease Control) released the statistic that autism now affects 1:68 children. Previous statistics indicate that the numbers were 1:88. This release, these numbers, caused autism to be a buzz word yet again. Not only for the NT community but also in our own autism community. But why? Here is a statement from the CDC’s website:

Prevalence

About 1 in 68 children has been identified with autism spectrum disorder (ASD) according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network. [Read article]
ASD is reported to occur in all racial, ethnic, and socioeconomic groups. [Read summary] [Read article]
ASD is almost 5 times more common among boys (1 in 42) than among girls (1 in 189). [Read article]
Studies in Asia, Europe, and North America have identified individuals with ASD with an average prevalence of about 1%. A study in South Korea reported a prevalence of 2.6%. [Data table] [Read article]
About 1 in 6 children in the United States had a developmental disability in 2006-2008, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism. [Read summary]  http://www.cdc.gov/ncbddd/autism/data.html

This blurp does not include the facts from the rest of the release. These numbers came from 2010 and include only 11 states. So why is this important you ask? Easy! The data is two years old. The states that the population was pooled from are limited. Seriously 11 states out of 50 in the US. This limited selection of individuals, mind you is counting only children above the age of 8, showed an increase of 29% in two years. The media is picking this up as autism being an epidemic. IT IS NOT AN EPIDEMIC! Autism is still widely misunderstood. The news stations picking this up are fueling a rise to find out why, a race to find a cause and cure. Let me tell you, we are not broken. We do not need to be fixed. 

I made a comment about the news report on ABC World news yesterday regarding a “Race to find out why autism is on the rise” and it lead to a friend asking “did they say why?” You see I don’t care why. Our house has rates of 3:5 with autism. My house is full of autistic people. I don’t care why it happened or what caused us to be autistic. I actually love our autistic life, even the struggles we have to go through to get to the great stuff. Instead of telling her that. I responded with:

there is no known cause at this point. Many believe there is a strong genetic component. The bigger concern is that there are very little services currently provided to our autistic children and adults. As parents we have to fight for every single thing in the school systems, more and more autistic kids are being placed in the general education (regular) classrooms with teachers who have NO knowledge on how to teach them. Media reports like this one and associations like Autism Speaks place more emphasis on finding the cause and/or cure and no focus or very little focus on helping families obtain services needed. The rates (which only included 8 yr olds from 11 select states in the US) indicate that we are going to have a generation of individuals entering the adult world and there are NO supports for them. The magical cut off for services seems to be 18 years old. I have two children who may never live outside of my home and may need my support all their life, who will take care of them when i no longer can? I’m not the only one in this boat. What will happen when those 1 in 68 children enter adulthood and their parents can no longer take care of them. This is why I was so outraged at focusing on finding a cause. We need to focus our efforts else where.

These new numbers will focus energy elsewhere. What we need to focus on is not the why’s or how’s, we need to focus on the services we are given. We need to focus on teachers knowing and being educated about the truths of autism. We need to understand that in a few short years we will have a group of people “age out” of the system and then what? Where are the supports for adults on the spectrum? We know what will happen after our children “age out” As parents and care givers we will be left high and dry with limited support. Should this be our reality? Shouldn’t we have a better chance at life? Autism is not something to be cured, rather the individual should be supported so that they can live the best life they can. 

Remembering who you are

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Ohio State Marching Band

Friday night football games were a way of life for me in high school. I was the ultimate band dork! I had dreams of attending Ohio State and being part of this prestigious band that dots the “I” in script Ohio. Ultimately I did not attend Ohio State, rather I stayed in Florida to build the life I have today.

Fast forward 12 years to present day.  I have three beautiful children, I am finishing my degree in Special Education in May of this year. I have an amazing husband that supports me. He helps me find myself when I lose myself in the family roles and the delicate balancing  act that these roles require.

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Before the game

This year my mom helped one more of dreams come true. I got to see Ohio State play live and in a bowl game no less. My amazing Hubby took over parenting duties for the day so I could be free to be me. For one night I was able to go out and know that my children were being taken care of by their daddy. As I got ready I realized I was doing things for me that I rarely do anymore.  I shaved my legs, I put on pants that were not sweats or yoga pants, I did my hair and I did my make up. I left for the game feeling like a woman and not just a tired mommy and wife.

With two children with special needs and one who is as typical as can be but still needs more attention to combat the amount of attention that the younger two need, it is easy to forget to take care of yourself. It’s easy to forget that before you were a mommy or a wife you were a woman. Not only did I get to feel like a woman. I got to spend a lot of time with my mom and my sister bonding in a way we have not done in a very long time. My mom has been a strong support to me throughout all of my life. She has stood there and pulled the strong hand when she had too, even though I know it nearly killed her to do it. She knew when to push me and when to let it slide. She did all of this so that I could become the best version of me. That is what a mom does, this is the type of mom I strive to be for all of my children

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In the midst of this great night and getting to be the part of me that is rarely seen these days because of all the other roles I have to fill in, I came to a realization. In order for me to be the kind of mom my mom is, I need to take care of me. I am not just a mom, wife, teacher, advocate, friend, sister or any of the other roles I take on. I am all of these and more. If I intend to keep going at the pace I do for any length of time without burring out I need to take time to take care of me in the process.

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I’ve got my sexy jeans on, my make up done, and getting my drink

Sometimes we just need to put our make up on, a pair of nice jeans, some heals and live it up like the beautiful women we are.

Here’s to remembering to put your sexy jeans on, do your hair and make up, get your drink and celebrate being the best version of you!

Judgmental stares

Dear Walgreens Employee and Shift Manager,

As Walgreens is a proud supporter of the Dan Marino Foundation 4th annual walk about autism I expect a little more from you in the area of awareness. However I should know better.

When my three year old daughter is having a melt down because she is fixated on a baby doll that she can not have at the moment it is really not your place or the time to look over your shoulder as the cashier to your manager and ask “Does your child act like that?”

You see, as I told you my child has autism. She is not reacting this way because she is a “spoiled brat.” Your unkind eye rolls are not going to change the fact that she is having a meltdown. This is not a temper tantrum. She is fixated on a baby doll. She is always fixated on a baby doll. It does not matter that she has on in the car or another 19 baby dolls at home to play with. She is fixated because all she plays with are baby dolls.

This mommy would love to educate you more about autism, but when you questioned her age and put her, by size, at four. I told you she was three and you rolled your eyes at her behavior. Well again I explained that she has a developmental disability and that while her chronological age is three she is functioning at the level of an 18 month old.

During a moment like this I am not sure what is going through your mind. What you think of my parenting skills or of how I should be treating my child’s behavior. My only focus at that moment is keeping my child from harming herself or others. I don’t have the time to educate you or any of the other three cashiers that are staring at my child and me.

In those four sets of eyes I am watched and in those moments I am judged, I am alone. I have accepted my children and the challenges their differences bring to the table. What I have not accepted is the ignorance that the general population has brought to the table. I have not accepted your judgmental looks and snarky mean spirited comments as the norm.

This mommy, will continue to educated the masses, but she will not be made to feel less by anyone!!!

Regards,

One pissed off mommy

Roller coaster

I am angry at you! Yes you, the ones who are making it impossible for my children to succeed in the typical functioning world.

You push these children aside and leave the parents to feel helpless at best.

I am jealous of you! Yes you, the one with the two year old that is speaking in full and clear sentences.

You don’t understand how hard it is when your child has words but can’t use them to tell you what they want or when they are hurting. Yet I am grateful that either of them have speech to share their words with me.

I am sick of you! Yes you, the mom or dad that is bragging on Facebook about that trip you are taking while your family takes care of your kids for you.

I hate that I cannot find a sitter that is capable of watching my two children with special needs. I hate that my own family cannot even watch the children long enough so that I can share a hot dinner with my hubby or hell take a nap.

I don’t want to hear it! So you couldn’t sleep for one night. I have lost track of the nights I go without sleep.

I am so angry, it seems like it is at the whole world, but honestly I am angry at myself for having these feelings. I am at a breaking point and need to have some time to regroup so that I can take care of my family. We are quickly approaching the winter holiday where all three of the kids will be home. Where I will spend 14 days with no help and no breaks. 14 days of meltdowns over schedules being off and things being different.

I DON’T WANT TO BE ANGRY ANYMORE!