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.

Changes

I am optimistic, I believe in the greater good and I truly believe that each of us can change the world one small voice at time.

Why are you trying to teach them social skills, you know you can’t change the world right?

Seriously though, it gets to be discouraging when those around you shoot you down. When those who are supposed to work with you don’t believe in the change you are trying to create. Yet still I strive to be that change. Our kids don’t always get the social requirements of society. They don’t always understand that you cannot laugh at another person’s lack of knowledge or mistakes. This skill must be taught. Whose job is it to teach it? Is it solely the parent’s? No this is part of an educator’s job, we must teach the hidden curriculum to our students with autism and similar disabilities.

It is useless at this point in their life to try and teach that skill. They will never get it.

If an educator truly believes this of a student, even if they are 18- 22, then why are you doing this? Why did you take that job and commit to helping these adults succeed in the world. Why are you here teaching them employability skills and training these individuals to become a functional part of society rather than committing them to a life in an institution?

They have gotten by this long just let it go. This is how they get along with each other. It is their normal interaction. They identify themselves as “ESE KIDS vs. Regular Kids” You cannot change that.

Your negativity pushes me to try harder. To prove you wrong. I may not be able to do it alone, I’m sure not going to do it in a mere 16 weeks, but if I plant the seed and you continue to water it and support that growth for the next 2 – 3 years that these students are with you I assure you there will be a change. I promise you that you can be part of the change that all of us are asking for.

You’re a great advocate, but you are too idealistic. You need to realize that this is what you get and you simply work with where they are.

Is there a reason that being idealistic is bad? Is there a reason that demanding a change, demanding that our students are given better is wrong? Is it because I am a new teacher, well technically still a student, that I am not jaded by the system?

You might answer yes to those questions but the truth is no I’m not all that new to all of the red tape of the special education world. I am giving my students, possibly your child or your niece, nephew, brother or sister, the same type of chance and education I want my own two children to receive. I do not want a teacher that does not believe that my children can do better. I want a group of professionals that see the untapped potential and will fight for them. I want a teacher that advocates for their students both in the classroom and out in public on outings.

I am not green enough around the ears to think that in my short 16 weeks with this group of students I will make huge monumental changes, but I am realistic enough to know that if the seed is planted and nurtured, these 10 students will be given the best education and chance at life after school they can have.

I am the voice of the change I want to see in the world. I am doing the things I want to be done for my kids for other students. I am idealistic, I am an advocate, and I will make a difference in the life of my students. 16 weeks is a pretty short time span, but it is long enough to show these students that I care.

What do you want? A teacher who doesn’t believe a change can be made, or one that will fight for your child and make sure their untapped potential is being accessed every day.

Changes are hard

Sunday night the kids and I talked about the changes that were going to come our way on Monday.

Mommy starts school again on Monday, just like you do. We will wake up early. We will go to school everyday. Mommy will pick you up from school after snack. Mommy will be home every night.

We have been having this conversation and this social story since winter break started in December. The only thing that changed is the start day.  Monday came and we woke up early. Lil man and Lil girl both made it out of the house on time without meltdowns! (win for me)

As we get into the car and are driving to school lil man tells me “It’s sleep time, sun sleep.”  Lil girl puts her two cents in “sun sleep.” Yes kiddos it is dark out. I’m sorry that you are having to be to school at 6:30 in the morning before the sun has even come up in the morning.  As we finish our short drive to the preschool and get out the car lil girl is excited to be back. Lil man knows that it is his job to press the smiley face so I can sign him in.

But now comes the change … We don’t drop off in the cafeteria for breakfast, it’s still too early for that. We don’t go to lil man’s class because his teacher isn’t there yet. He and his sister both go to the two year old room where they will wait for their teachers to come in for the day.

Where was mommy’s head? I didn’t think to prep them for this. How will they handle this change?

Lil girl was great about it. It was her class and her teacher so it was normal. Lil man threw himself on the ground crying as I tried to leave. He stood up as I walked out the door and ran after me.  Change is hard! 

At the end of the day Daddy and I pick up the kids from school. They tell us that lil girl will be transitioned into the three year old classroom. That it will be done in a single day.

Mommy isn’t ready for this! She isn’t able to fully communicate. She isn’t developmentally where the other three year olds are. She is below where most two year olds are. 

She made it into the three year old room with no issues. I watched her today when I picked her up. She loves the room and the new toys. She loves to sit by the other children doing her own thing. But she is there. She was ready even though I wasn’t.

Change is hard. It’s hard for a mom to let go and watch her children go into a new situation when you aren’t sure how they will do. It’s hard to accept that children change and grow. But change also teaches you things. This change taught me that lil girl loves the babies in the classroom and all the kitchen stuff to play with. She loves that she can do her own thing and still not be worried about the others in the classroom.

Lil girl taught me that while I might not be ready for it, she was and she is happy there. Change is hard, but needed if a child will progress to the next step. Whatever that may be for that child.

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!

Words from me to you

Dear Son,

I have watched you grow from before you were born. I have been with you through each step of your journey. Somedays I have cried tears of anger and sadness and others I have cried tears of joy and pride. Today though I did not cry as I watched you decided to pull a wall around you and your world.

Sunday morning you woke up and decided you were not going to speak. You see, for me this hurt. I wanted to scream at you to speak. I wanted to shake the words out of you. Those words are there, yet you choose not to use them. We have spent hours upon hours working to get to your words and here you are five years later locking them up inside you.

I know you don’t understand why I am frustrated right now, but I am. I hate watching you pull yourself into this world where only you know what is going on. You lose all eye contact when you do this and it scares mommy. I feel like I am losing the little boy I know when you go to this place.

I think it would be pretty cool if you could take me to this place with you. I know it’s got to be pretty amazing since you have been going there more and more these days.

Son, I know you don’t understand but Mommy misses you so very much these days. I am learning to accept that this world of yours is a safe place and that you will go there when you need to. I am learning to accept that you are not gone, rather just handling your thoughts in a way that you know how. Mommy does that too, I just don’t have any one to say “I wish you weren’t there” to me.

I can’t promise you I will always be the one who is okay with you going to your world, but I will always be the one who loves you no matter where you go or what words you decided to use and when.

So you think she wants …

Little girl turns 3 in just one short month. I’m not sure where the time has gone, but it has gone. While I will readily say she is a smart and talented little girl, I will also say I wish I could buy her a new type of gift. Selfishly I wish that like many other three year olds I could grace her with a new Big Wheels with her favorite character Minnie Mouse. I selfishly wish she had the motor skills to peddle the trike down the sidewalk like many of her peers. I selfishly wish she would not point to the same baby doll/bottle/stroller that she already has 5 of because I want her to have something new and exciting.

Following my selfish wants for her birthday I have selfish wants for her christmas as well. I want to buy her a gift that she will be so excited to open that she rips the wrapping paper off in excitement to get to her new 3 cheers Minnie Mouse. I want her to have this because she loves minnie and it isn’t  baby doll or barbie. The reality is, even if I buy this for her she may be excited for Minnie, but she will be terrified once it starts to cheer and dance and move. Honestly she may be more focused on ripping the wrapping paper into small pieces because that’s how she rolls.

Despite my selfish wants for her birthday and christmas, I will go out and get her yet one more baby doll and some more barbie dolls because that is what she loves. I will wrap her gifts in Minnie Mouse  wrapping  paper and enjoy whatever the holiday and celebration may bring.

In our world birthdays and Christmas tend to be just another day. Another day that brings too much stimulation and too many new faces in a world that thrives on sameness and their form of controlled chaos.

Thankful for Her

Lil Advocate, Age 2

In September of 2006 I was blessed with my first child. While all children are gifts, this child was something special. My pregnancy with her was rough. I spent most of it on bed rest after going into labor at only 15 weeks into the pregnancy. My cervix had already started to dilate and due to a partial placenta previa my OB could not surgically close my cervix. This meant I had to spend all of my second trimester and part of the third on bed rest.

I do not know how to stop moving or sit still. In order to ensure I stayed on bed rest my husband and mom decided it would be best if I stayed at her house where my younger sister was home during the day finishing her senior year of high school via virtual education.

By the third trimester I was released from bed rest but told to take it easy. My husband and I FINALLY were able to move into our first apartment. I spent the last 10 weeks of my pregnancy getting ready for this little girls arrival. Finally the day came, and I got to meet this beautiful baby girl. The best thing about it was she was MINE! and boy was I scared about that. 

Lil advocate has been a blessing to this family since the day she was placed in my arms. While she may never understand how much she had taught me about life, she will always feel the love I have for her. I am thankful for this amazing child that calls me mom everyday. She has a personality that will light up the room. Our family would not be complete without her. 

I am thankful that with all the challenges our family faces and the amount of attention that her siblings require she still comes out on top of it all. Her determination to succeed in life is one that is awe inspiring. I am thankful that I can be a positive role model for her to learn from. 

I am thankful that my daughter welcomes me into her heart with love and understanding. I am not always happy or perfect, but she knows that at the end of the night I will give her that huge hug and kiss before she goes off to sleep. 

I am so thankful that my daughter knows how great she is and how much she means to me. 

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 …

Little Girl

In 2010 I brought home the most beautiful little girl. She had a mind of her own from the start. She was born three weeks early. She was a little yellow, and a little under weight but healthy and all mine. I watched her meet all of her milestones up until she was a year old. Then I watched her milestones slow down. I watched my beautiful little girl lose the few signs she knew, I watched her babbling stop and heard her become silent.  That is a parents biggest fear. 

At 18 months, I saw so many signs in my little girl. She was just like her brother in so many ways. She didn’t enjoy interacting with her siblings. I thought this was because her brother has social skill issues, that if I put her in preschool this would change. So I spent money I didn’t have to ensure that she had social interaction with her peers. I hoped that the signs I was seeing were not leading me down this road once again. 

She started flapping, she started lining up her toys. It looks like it would be normal until you look closer. We joke that little girl makes her lines so pretty,  yet inside I am crying NOT AGAIN! YOU HAVE TO BE FREAKING KIDDING ME! She has amazing eye contact and is social with adults and children older than her … they say those two things disqualify her for an autism diagnosis. This also means we get no services.  She is one point too high in two areas for help.

I have spent hours fighting to get her therapy and even more hours working one on one with her while the older two kids are in school on speech sounds. Around two and a half we got speech sounds. Then unintelligible single words with gesturing. These things didn’t happen over night, but after hours of work.  For every step we took forward, we would take a few steps back as well. 

This past week we have seen a huge development. Spontaneous speech. Thats right, not just echoing, but actually words with intent. We also have had a lot of functional echoing. This makes me hopeful. This reminds me that gains are not accidents but a result of hard work and dedication. Even if lil girl loses her words again, I know they are in there and one day I will hear them again.

 

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?