Thursday, August 27, 2015
I am a warrior. But what i fight is not my kids "disabilities" You see I believe that my children, my sweet boys, were made exactly how God wanted them. Even amoungst some family this isn't a popular belief, because hands down, I would not change them if I could. My sons are not a disabilities. They are not defective. They are not off, wrong, or inadequate. They are simply different Their autism isn't ugly. Their autism isn't judgemental. Their autism isn't offensive. And neither are other disabilities. This is not the war I am fighting. I am a warrior. I am a warrior, and I know my ally. My sons, autism and all are my allies. We are in this battle together. What are we fighting? We are fighting for full equality and necessary accommodation in education. We are fighting for education for our law enforcers and social workers. We are fighting for them to maintain the right to stem in public without judgement. We are fighting for ACCEPTANCE. And while most of the above people, professionals especially, will say they agree with these causes and want to see them met, they will also tell you there are always areas for improvement. I am a warrior. I battle for the child who I carried in my womb. The child I birthed, fed, sang to, stayed up days in a row with. The child I coax out of meltdowns, the child I snuggle when scared. I fight for my child. My child who has the same rights as every other child. I am not saying the world if asked "should disabled kids have the right to a equal education with accommodation" would say no. I am saying they don't ask how we can achieve a better system. What i can tell you is if we found and achieved a better system for those with disabilities all our children would be the better for it. We hide away kids with disabilities, not because we are saying they should be hidden, but because we say there is a standard for normal and we need to reach as high as we can to affect it. We don't want the Autistic kids flapping to distract the child to either side of them. But kids adjust. They can and will get used to it. It can and will become second nature to ignore it. When they do something amazing happens. You see they are becoming accepting individuals. Seeing their classmate not for their disability but for their mind and heart. Now I know kids can be shallow and they can be mean. Bullying for any reason cannot be tolerated. All life styles, belief systems, races and mental abilities must be respected. We should do all we can to encourage good character in the classroom. Character traits like: Adaption Flexibility Kindness Goodness Charity Love Acceptance Joy Friendship Openmindedness and so on. That should be the call of educators. All educators. Principles, department heads, teachers, subs, and so on all the way down to the paraprofessionals like me. In accepting and teaching our children of disabilities we are effectively killing two birds with one stone. See our future social workers, police officers, teachers, politicians and other prominent members of the community are in high school right now. If we could teach about others of all type of disabilities, of what they face, if we could encourage empathy and acceptance in our youth for such people, how much more respect would they have for their common man. For those who face big battles. And how much more empathy would there be when the "normal" people in their lives face hardships? There is no negative that cannot be over come by merging our student population with the population of disabled students. And me? This warrior mom? That's the war I am fighting for. The war for a better world for my children. The war for a better world for yours. Teaching character can and will change our world So where do we start? How about a mandatory semester paired with someone facing a disability for one class. For art, pe, or other non core classes you could choose from. Our children could learn from each other. Mine from yours, and yes yours from mine, disability and all. Extra curricular clubs with pairings like this would be amazing too. If a child cannot be put in a mainstreamed classroom we could bring main-stream children to them. Units studying different disabilities in depth and what these kids face, and how their lives still matter and they still make viable friends is another one. Now I am just listing ideas off the top of my head. Our education system has come so far, and I am proud to work for a school that really works at equality. But with how far we have come we still have further we could go. I am a warrior mom, And maybe its time for more of us to fight.
Wednesday, June 10, 2015
II don't know who you are.
I don't know what you believe.
I don't know where you are from.
I don't know you.
But I know your future spouse:
That's my baby boy.
You will one day marry either my sweet buggy (Jairmie) who is focused, funny, and friendly or my baby K (Kaiden) who is tempermental, thoughtful and tender.
You will be my daughter-in-love.
You will be the one who my son chooses, and who chooses him.
I want to thank you now for loving him one day. My boys have overcome a lot in their short lives. They have endured therapists, doctors, and high expectations to ensure they are the best they can be while still keeping who they are intact. Autism and all.
You should know I litterally know nothing about you. Jairmie is 4, his world right now revolves around dinosaurs, order, and chocolate. Kaiden is 2(almost 3) and his world is a whirlwind of trucks, grapes(his favorite food), and just not understanding why there are rules.
But one day it will revolve around you and The Lord, I pray.
I know some of what you will see in my boys though, because they are a lot like their daddy. Especially kaiden :)
I know that there will be a day where your future husband will ignore your need for his interest.
I know that your husband will sometimes get so wrapped up in life he forgets to say I love you when he hangs up the phone.
I know there will be days when it feels like he doesn't understand. Or even doesn't care.
But I know he will love you. You will take my place in his life. You will be his greatest support system, the sholder he cries on, and he will be yours. You willknow and respect when he needs you, and when he needs space.
My boy, who you love with all your heart, will always be my baby.
He will be silly. Both my boys like to giggle and have fun.
He will be loving. Both my boys love cuddle time.
He will be cautious: encourage him to step out of his comfort zone.
He will be kind, but in a different way. Jairmie and Kaiden are giving loving people. But sometimes they show love in weird way sometimes. They show love by random little acts. Sometimes they can't get te words out. Autism is part of them. It is likely they will not always be able to access their words te way they want. Be patient, because what they have to say will make you happy
Please remember he will always be my baby. The baby I never knew I would have. I will do everything I can to teach him how to love a woman. How to treat her. How to respect her. I will give it everything i have.
I will teach him to show honor and love for God by the way he loves and honors his family.
I am asking you, my sweet daughter in love, to love my boy, with all your heart.
I am asking him to love you the same way.
I am asking you not to hate me. I want to be your friend.
I am begging you to not be angry at ther differences but embrace them.
I don't know where they will be when you meet them. I know right now I am trying so hard to help them catch up. I am working daily with them to learn to read others emotions and respect them, while still respecting their own. I hope I succeed. I hope they succeed
Don't be mad when he can't tell you why you are upset: explain it. He is like his mommy. It's hard to understand what each different negitive emotion in each person looks like, and how to help.
He will touch your soul, you will touch his.
I hope they love you, beautiful soul, how you deserve to be loved.
Thank you for loving my boy.
Forgive him when he screws up. He will.
I pray I don't mess up raising him. I'm really trying.
You can come to talk to me, daughter -in-love. I will listen.
You may worry I'll just take his side cuz he is my son, but if you are the one I have prayed God will give him, the till
Death do us part kinda love, then you will be what's best for him. You can come to me, my goal will be to support your marriage, your love, your similarities and differences while being a loving ear.
Thank you, so very much.
Thank you for loving my boys, just as they are.
Tonight I pray for you.
Friday, May 8, 2015
I have anxiety and depression.
I have special needs children.
As you can tell these two things correlate.
However if you remember your years in school correlation does not necessarily equal causation. For example, just because I have two children with disabilities doesn't mean they have to have caused my depression and anxiety.
In fact, they are not the cause.
I have had depression anxiety since I was little. I experienced abuse, neglect, and emotional turmoil. Yeah I know boo-hoo, poor me, someone cry me a river. Okay now that that's over back to our subject matter.
My children did not cause my anxiety and depression. In fact, they are the only thing that brings me joy when I am in a deep depressive state. Somehow though every single doctor I see seems to believe the reason why I'm depressed like solely due to the fact that I have two children with disabilities. They also seem to believe that all of my anxiety have to do with my children's future. Do not get me wrong like every other parent I worry about my childrens future. Will they have friends, will they be happy, will they find love?
Why is it that every doctor I have ever seen, since my children started showing delays, link the anxiety and depression I experience back to their delays?
Yes there are parents of children with disabilities who did not prior to the diagnosis of their child have depression or anxiety. I'm not disputing this fact. However what is to say that these parents are depressed because of the children's disabilities? What to say they would not have been equally depressed and overwhelmed therefore anxious by a neurotypical or normal child.
In this case is correlation truly equal causation? I would argue no, unless you are speaking in the realm of specific cases.
Why do I say this? Because majority of Americans at some point in their life will experience depression. Depression and anxiety are both normal reaction and to some point adaptive behaviors.
We are a social species and in such we form bonds when these bonds are challenged our view on the world is in fact challenged.
We are being affected by the views of others.
We are being impacted by stigma.
In short, we care about what people think. This is a natural reaction for humans. Somebody who doesn't have the background I may not experience anxiety the way I do. To an extent though we are all affected by the anxiety of what will people think of us and as an extension of ourselves: our offspring. When people disapprove of our children it hurts because we love them so fervently. This pain can blossom into depression. The isolation society puts on parents and those who have disabilities is undeniable. If we go back to our previous thought correlation does not always equal causation.
Our children are not the cause of depression and anxiety in parents special-needs children, in my humble opinion. Now I don't have a degree in psychology but bear with me.
Let's break this down to a basic example of where correlation does not equal causation.
*disclaimer: I know many face medical problems that cause their obesity. It is important to recognize this while realizing most obesity is caused from poor eating habits. Btw I am fat. An American size 22.
Obese people use spoons to eat. However not everyone who uses spoons to eat it will be obese. Why? The answer is obvious. Spoons don't cause people to be fat.
What causes people to be fat? Well obviously what comes with the spoon I.e. the over abundance of sugary food.
Examples like this are very basic but hold true for the issue at hand. The disabled child is not the cause of depression. In fact, most parents of children with disabilities will tell you their child is the light of their life.
What caused the depression is their predisposition to depression and anxiety(if applicable), the paperwork, the doctors appointments, poor support systems, ignoranance surrounding disability, lack of sleep, Ect.
Still we hear doctors say things as ignorant as "I would be depressed too if my child were disabled".
As parents of children with disabilities we recognize this is an effort to be sympathetic to our life and the trials that we face. However, with a little more understanding of disabilities, and better support for those facing disabilities and their families we could potentially lower the rate of depression and anxiety famililies of those with disabilities.
It's scary not knowing if the world will support your child as they grow older.
It's scary not knowing if you or your child will be rejected solely due to the developmental or physical state that your child is in.
I speak mostly for me as a mother. However I feel certain many will agree, our children are not burdens. Our children are our joy. The burden lays in pleasing society and reaching their goal of what a perfect family should be. We are not allowed to fall short without serious speculation on whether or not we are fit parents for children. We are warriors in our own right. For we don't face the battlefield equipment gun and a chance of our death we face the battlefield equipped with knowledge that we know people will not readily accept.
They are not the same no but they are equally real.
I am not depressed because of my children and as a mother of two differently-abled children I would ask Doctors and professional to consider the fact that perhaps my children are my joy and not my sorrow because different is not less, simply different and that is kind of beautiful.
You may ask why this matters. Either way parents of disabled children may experience more then their fair share of depression.
I assure you it matters. As A relatively normal person I can tell you that I would not want to be considered the cause of someone else's pain. Especially someone I love. People facing disabilities have a hard enough life without the burden of our blame placed on them.
It is not my child fault I depression.
And it's not your child either. It's just a fact of life and perhaps time we realize that we cannot truly blame other people for how we ourselves feel. They inform it, they affected, but they do not cause it.
Tuesday, May 5, 2015
My sweet boys: it doesn't matter.
It doesn't matter.
It doesn't matter one little bit.
But you do.
You are different. You love to spin, and bang your heads on the walls. You are behind in your language development. You are not normal.
But coming from me you were never going to be. Momma is a weirdo, a misfit: a writer. Momma has always been better articulated on paper then in person. Momma has a hard time telling between angry/sad, happy/content. Momma is loud. Momma is anxious.
Momma might be autistic. It doesn't matter.
Because momma, just like you, tries.
It doesn't matter:
What people say
What people think
What people do
What matters is what you do.
You have a disability.
It doesn't matter.
Because everything that delays you, slows you, makes you feel different, or frustrates you, is not everything that makes you.
What makes you is:
Your determination: to both successfully break rules and to over come other obstacles
Your joy: in every dark cloud you see a silver lining.
Your love: no two brothers could love eachother quite as much as you do.
Your strength: You have lived through more then many children ever will. You have fought a big battle and won so many Victories!
Your optimism: no matter what you face you are always happy. Always thankful. Just like Momma when something goes wrong you simply say "I'm blessed" and move forward
Your smart: you can break into any lock.
Bug: at four you can already add and spell basic words.
K: you know your alphabet, you numbers and lots of animals... And your only 2!!!
You both have overcome and over achieved in so many places
That's only part of who you are!
You also have autism, incredible attention to detail, a brilliant mind and endless potential.
You have autism. This doesn't mean you have no hope. Infact that is so far from the truth. You can do anything. You don't have to be rich to be successful. Money's nice but being able to wake up daily and do what you enjoy is nicer. To have family and friends.
I guess what I want to tell you is your gonna hear a lot of can'ts, won'ts, and nevers!
Don't listen to a single one of them.
Because as cliché as it sounds you can be anything. I believe this with every fiber of my being. You are miracles. You have already surpassed every doctors limits they have set for you.
You're an ispiration. You're a miracle. You are my pride and joy.
My two sweet boys, don't let others direct your destiny, you won't like where you end up, cuz it won't feel like home.
Own your future, because it's truely yours.
And the critics? Forget them.
Because seriously what matters is you are doing the best you can at being the best you can be. What more can anyone ask!
Saturday, April 11, 2015
This week my youngest, sweet lil Kaiden Wyatt was diagnosed with autism.
On my blog to him you can find my thoughts I wanted to express to him.
But here is what I want to say to the world.
STOP TERRIFYING PARENTS!!!
The word strikes fear in the heart of parents. But bear with me if you will.
Imagine you go into an office concerned about your child. He/she seems a little different from other children. After 3 hours, the doctor comes back with a sorrowful look on their face and says:
Miss/Mister (your last name), I have some unfortunate news for you. Your child has been diagnosed with
Add any of the below:
Now what do you think? Because every one describes people on the autism spectrum all over the world.
Not to belittle the struggles autistics face living in a neurotypical world but they can live happy lives. They can live productive lives. Autistics have friendships, degrees, jobs, spouses, sex, and children.
This isn't my first rodeo. 1 1/2 years ago my sweet Jairmie William was diagnosed.
And they terrified me. They made me think my child would have no future.
JUST BECAUSE SOMETHING ISNT TYPICAL DOESNT MEAN ITS NOT VALUABLE!!!
Please my friends and readers share this. Because there is something you must learn this autism awareness month:
Autism isn't a sentence to a bad life, it's a different path to a good one.
Every single autistic adult I have ever talked to will tell you they wouldn't change anything about who they are.
They don't want a cure. They don't want to be fixed. They are fine. There are hard things in their life but every diamond is formed under pressure.
This is what you can expect of your child!
Let's give autistic children and adults support to be the best they can be. To reach their full potential, as aided by their autism.
Let's accommodate sensory needs, support development and be cheerleaders.
Maybe their life will be completely conventional "normal" as we like to call it, with just a few quirks.
Maybe they will have to have help caring for themselves.
But I gaurentee that autism will not limit the most important things life holds
An really, what else is there.
So what if it's not normal? When did normal become a goal? Have we started asking our children to be average? What ever happened to unique, extraordinary, and amazing. Why would we ever want our children to fit in some mold when if they break the mold we can see what a beautiful creation they were made to be?
Autism is always seen as a negative
But look into history. What amazing famous people who changed the world, would today have been diagnosed with autism?
Don't let them tell you what your child can do. Because nothing is more heart breaking for a child when you believe more in a stranger then you do in them.
Please, this autism acceptance month of April, try to see the beauty in autism.
Let's stop scaring parents. Sure let us know there is a rough road ahead, but tell us there is hope. Tell us how to support our child and keep them safe. Don't just leave us floundering in terror. Tell us of successful autistics. Tell us of the success story you know. Stop saying "autism" the same way people say "cancer" or any number of things that are actualy deadly.
Autism isn't a disease or sickness, so stop treating it like such.
Stop making us terrified, and start actually educating us. On what autism is for the adults living with it, on both sides of the spectrum
And parents, don't worry, your not alone. Look in the eyes of your child, because I know when I do I'm reminded Autism is beautiful.
Wednesday, February 25, 2015
Every time I meet a new person who meets my children, they instantly notice a few things.
1) bug doesn't talk like normal children his age
2) k doesn't really say much more then Hi (to new people)
3) neither have any kid with kid social understanding
4) they both have strange behaviors
Often I have to give an explanation.
"This is Bug, he has autism, and this is k, and he has a global developmental delay"
The same result comes every time, out of almos every persons mouth
"Oh, I'm so sorry that must be hard"
And I always think the same thing....
Here we are again.
While I really appreciate the heart and care behind their concern I have to explain something to them every time.
"Thank you, but I'm not sorry do you don't have to be either."
Insert the startled looks.
But I am not.
Both my boys are disabled, different and down right strange in some aspects.
But dang, they are amazing!
I want to approach a topic with you. Of course there are some hard things about raising two disabled children. There are hard things about raising children in general. The hardest for me is when the children can't tell me what's wrong.
Second is the sensory overload
Yes these are hard, but other parents have hard things too.
Like (idk I don't have neurotypical children) but I would imagine that when your 4 year old tells you they hated you, that's hard.
Or getting time with them
Or when they talk back to you it's hard.
There are however 2 different kinds of hard here. See for me it's desperation not knowing what is wrong with my child we they are in a meltdown. For you it's not knowing how to make your child understand what you do you do out of love.
My sons, never have a flicker of doubt in their mind I love them. They never say they hate me. They never want to ignore me(any more).
When you hear about autism it's terrifying. It is. I was terrorfied. I asked my sons diagnosing therapist "does he know I love him."
See he was nonverbal back then. Lo those 18months ago.
You want to know why autism was so scary? Because it's scary for a different reason then the dx we have for k.
So do you know why it's scary?
ALL YOU EVER HEAR AVOUT AUTISM IS BAD. OR TERRORFYING. OR MEAN.
You never hear about the brilliant autistic writers, artists, doctors, carpenters, practitioners, home makers or anything else.
You never hear about the autistic social butterflies.
Unless you are IN the autism community these are not things you hear. So when I heard autism I saw what I had grown up seeing an hearing. You see my moms friend had an autistic son who also had a long list of mental disorders. His comorbid conditions made him a horrible threat to his family. Not the autism. The comorbid conditions.
So that's all I knew. That's it.
The fact is, as my son and one very specific autism community on Facebook has showed me, AUTISM IS BEAUTIFUL
Autism is beautiful
Autism is hard
Autism is madness
Autism is genius.
Autism is energy
Autism is joy
Autism is strength
Autism is fear
Autism is loving
Autism is playing
Autism is habits
Autism is hobbies
Autism is power
Autism is trust
Autism is faith
Autism is a full life.
Autism is a big part of a person, but dammnit they are still a person!
My favorite quote:
To succeed in art or science it seems one must have at least a little spark of autism - Hans Aspergers.
Autism is scary. Until you know what autism is.
I am not scared of autism. I am not sorry my son has autism.
Yes k's global developmental delay is scary. It's scary because often k learns so slow. Often I don't know how to teach him. What will work. When will I find what will help him or what is causing his delay.
For the sake of this we will say GDD
GDD is unpredictable
GDD is quirky
GDD is not growing up to fast
GDD is big smile
GDD is warm hugs
GDD is frustration
GDD is flourishing
GDD is learning and changing
GDD is staying the same
GDD is bright eyes, smart kids and silly fun.
It's scary because much more often then bug i find myself not knowing how to help him. I get bug more then k. It's even been poised to me that I may be aspergarian, I don't know. I don't really care for a dx if I am cuz I'm comfortable with hi I am,
My point is: every child comes with their share of trials they and their parents must face. Don't feel sorry for me. feel sorry for parents whose children face cancer and don't make it, for parents whose children face Krabbe or Battens disease.
Feel sorry for those who have to watch their kids die. When I say this, don't feel sorry they had them, feel sorry we don't have cures for ACTUAL illnesses and fight to help find them.
What you can do for me is see my children's different ablilities are a part of them, and they are amazing just as they are. Be my friend let me cry and remind me how blessed I am. Tell me you don't know how to help, but don't apologize for who my kids were born be.
I have a beautiful family.
I know God made them this way, and if you asked me, when he made these boys, he out-did himself ;)
I mean look at those faces!
Saturday, February 21, 2015
Dear fellow parents:
I want to say thank you. Thank you so much. I am so thankful your child doesn't care. No, seriously:
Thank you for raisin a child who doesn't care that mine makes loud noises:
Sometimes both my boys tend to screech, and talk very loudly. Thank you for raising a child who doesn't care.
Thank you for raising a child who will spin in circles with my child and just laugh with them. Sure it's not conventional play but it's totally fun so they don't care.
Thank you for raising a child who doesn't care if mine takes a toy from them, and just kindly asks them to ask. They do it because they lack social skills and we are truly trying. That is amazing that they don't lash out, or get mad, cuz they just don't care.
Thanks for raising a child who doesn't care if others notice mine is different. It's refreshing to know that they will have friends who except their differences. That the future world will have adults who don't care.
Thank you for raising a child who doesn't care about stigma, doesn't care about normal, but instead just cares about fun, having fun with my child.
Sometimes children care too much.
Thank you for raising a child that doesn't care. A child that sees a heart, not a diagnosis
To raise a child who doesn't care, we know you don't care, so thank you for not caring.
You rock. And I promise is that if you ever face a child's diagnosis, I won't care either <3
Wednesday, February 11, 2015
Dear therapy team,
First off I want to say thank you. There are not enough words in the English language to articulate exactly how much what you do means to my child(ren), myself, my family, and our world. When you lay your head down to go to bed at night please know you do so having made such an incredible difference in this world. You matter. Your worth is more then words can explain. You didn't choose your career for money, you didn't choose it for power, no, you chose it to make a difference in the lives of children. This makes you something amazing. This makes you special. Thank you for the work you put into my child(ren).
Please forgive me when I fall short. I sometimes push too hard.
I sometimes expect you to have answers to questions I have that no one can answer. That is completely unfair of me. I just want someone to tell me we will be ok.
Sometime(let's be honest, usually) when you come to my home it's not as clean as I would like. It's cluttered the dishes need done and sometimes it smells like unpleasant botily excretions. I promise I am trying to potty train my child who "should have been trained years ago" and until then it sometimes stinks here. I wish I had the strength time and energy to keep my home better homes and garden perfect for you. There is no sarcasm here. I really wish I did. It can jus be so hard. Thank you for not commenting when the floor needs mopped, or on the smell. I promise my house may not always be clean, but
It's always safe
Thank you for not commenting when it's obvious I haven't even found time to wash my own hair in days. When I look tired and sloppy and my breath stinks because I was so rushed this morning I forgot to brush my teeth. Please realize I haven't eaten in those days either. There was a time when I dressed nice, when I did my hair pretty, when I did my makeup and when I appeared to put enough care in myself. I just don't have the time anymore. My child(ren) are my only concern.
Thank you for understanding that I work a full-time job with special needs child(ren), am a maid, a chef, a photographer, a mock-therapist, a cheerleader, a doctor, a wife, a mother, an employee, and even though my child(ren) are your job you still try to remind me of the value of me. Thank you for reminding me I am my child's biggest gift.
I have a unique perspective on the world. I know what you give to it. You have made this world better already.
Thank you for coming alongside my family, being non-judgemental, and realizing that we are fighting like hell just to give our child(ren) the world. For knowing sometimes it's like we are a ship taking on water. For knowing and understanding that in this life we lead, we would change nothing. Because to us our child(ren) are spectacular.
Thank you for enduring the meltdowns, let downs, tantrums, tiredness, frustration, sometimes the anger our child(ren) sometimes have with grace. Thank you for being loving and not angry. Thank you for taking the bite my 4 year old gave you and using it to teach him instead of viewin him as a "risk".
Thank you for forgiving my screw-ups. I never expected this life. I never expected to have to meet you. I never thought we would be here today. But we are and i am thankful to be here, with beautiful child(ren) and such support.
As a special needs mom it can be frightening, hectic, guilt stricken, tiring, busy, hopeless, hopeful, beautiful, joyful, chaotic, pride-filled, and amazing life. Sometimes the world doesn't see the value in my child(ren) like I can. Like you can. They are different. They are beautiful.
Thank you for understanding I am first and foremost a mother. Thank you for helping my child reach their God-given potential and purpose. Thank you for being an angel in disguise.
With unequivocal gratitude,
Us Special needs mothers.
My sweet boys J & K :) both have disabilities, both have been helped by therapists diligent work!