Mommys boys

Mommys boys

Wednesday, February 25, 2015

Why I am not sorry my children have disabilities.

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? 


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. 

Thank you. 

I have a beautiful family. 

Beautifully unique.

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

To the parent of the kids who don't give a care

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

To my child(rens) therapists

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!