Wednesday, April 16, 2014
Tuesday, April 15, 2014
I have never been one for confrontation.
I am a people pleaser through and through, bending over backwards in hopes of never disappointing..striving to be a peace maker.
So when I read this essay and this one by incredible mamas who both have little boys on the spectrum I immediately panicked on my choice of words in the essay I wrote about how autism is not a label.
I mentioned my son was autistic. And since I love that boy more than air I obviously didn't mean any offense by it.
But I worried. Should I edit it? Was that offensive? Would they think that I was one of those Moms who felt so incredibly blessed and it was somehow way simpler for me then it was them?
Then I remember hearing about a man in the blind community saying he would like to be referred to as blind man. Essentially putting his disability before himself.....and that is okay.
Sometimes being politically correct is exhausting.
I wonder what I would be teaching my little Jett If I saw ....
Monday, April 7, 2014
Autism is not a label: It is by all means an explanation!
But I couldn't!
I wondered how in the world I was supposed to accept it if my friends and family were like me, hardly able to say it. The word autism felt like a label; cruel, painful and restrictive.
Oh,
I didn't want any part of it! I would have given the moon, I would have gladly given my life for him not to have a struggle in the world! I am his mother, my job was to protect him!
And I couldn't!
I wore my knees out in prayer, pleading for direction on this devastatingly beautiful road my family so suddenly found ourselves on, In a moment of comfort and clarity a sweet and simple voice came into my mind whispering so loud I could hear nothing else....
"AUTISM IS NOT A LABEL!" It is by all means an explanation.
That sudden realization turned weight into wings. I felt myself breathe. I felt myself starting to heal.
"Autism. It is not a word to be feared. It's a child to be loved" four sea stars.
Autism explains what is happening in my Jetts brain the same way as describing a child with a hearing impairment as deaf; an infant without visual perception as blind or a doctor diagnosing a child with an inflammatory diseases as asthmatic; or a child whose body doesn't produce insulin as diabetic. I would never even for a second think that another mother was labeling her child when she explained he was diagnosed with a severe food allergy!
It felt almost silly that I had been doing that to myself!
One of the most beautiful realities of rasing a child with "extra" needs is knowing very well that challenges may always be part of that child but takeing THRILL in that it by NO means defines that child!
What autism will never describe is how my little boy is busier than a bee and sweeter than honey with a smile that is completely and utterly contagious! Or how he has the loveliest green eyes, rosy cherubic cheeks and laughs from his belly! Autism simply explains that his brain developed a bit differentially but, his big heart, tender soul and sweet essesnce have and will always remain the same....perfect! In the words of Temple Grandin autism may make him"Different but not less." Nope, never less!
My greatest ambition is that someday I may see the world with the wonder, zest and integrity that he does.
So the next time you hear a well meaning friend say "I just don't understand why they have to label kids so young these days." I hope you can smile sweetly and reply firmly "Autism isn't a label, its by all means an explanation, a child to be loved."
And if we do feel the need to "label" a child I think awesome, incredible and pretty dang amazing would work beautifully!
photo credit: the talented yan palmer
photo credit: the talented yan palmer
Saturday, April 5, 2014
devastating beautiful road to be on
It has been one devastatingly beautiful road to be on. I'm constantly feeling like I'm walking the delicate line of preserving my tender heart for every. single. triumph while still learning how to grow thicker skin for the unkind words that have been directed my but most heartbreakingly his way. My mission has never been for my Jett to view the world differently but there is a raging fire in the very depth of my soul for the world to view my child differently! After all I am his advocate, his voice, his mother. He is our heart.
Thursday, April 3, 2014
Please forgive me: what to say to a mother with a special needs child when you don't have one.
dont R word
please forgive me for those time of watching your child talk sing or interact makes my heart ache a little
please forgive me for those time of watching your child talk sing or interact makes my heart ache a little
Memories
NOVEMBER 2013
The age old question that nearly every mother faces....If given a choice would we rather have our body or mind back? I would gladly take either! Is that a choice?
If memories were to be recorded in my mind alone this absent minded mother of two has it by good authority (if history is any indicator ;) that those sweet memories will have a very uncertain future......So my fingers have now been put up to the task of writing and remembering the sweet stories and thoughts that will makeup my children history and childhood. That folks is delegating at its best ;) My mind is so relieved and seemingly forgetting things as quickly as I type.
-This past Sunday was spent at my children Grandma Shari house. It was magic watching Jett run after and play with all of his cousins. I noticed that all the little boys had buzzed heads and dirt under their finger nails....that my friends are what a little boys childhood should be made of....Jett laughed from his soul at every silly antic his cousins tried...oh and tried to mimic them....Before we were leaving Jetts cousin noticed that Jett has only a few words and seemed to acknowledged Jetts attempt at conversing with him with a giant grin!
He turned to me and said "I didn't know Jett could speak Spanish!?" haha
Now if only I could teach that little boy english ;) As we were leaving Jett turned to Danny and said "BYE-BYE" Danny responded in solemn voice "Bye Jett, I love you too..." I was in the corner in a big puddle melting.
- I am really not even sure how it happened, Just that id did. Some how Jett that clever child of mine tricked me into switching beds with him....Now he is enjoying my glorious king size bed and trust me when I say there is definitely not room for three! While I am upstairs sleeping on a boat. The trickery began a few months ago and shows no end in site.....I mostly miss sleeping with my kids Dad (that is meant in a very P.G. sort of way ;) I wake up sore every morning and tell my little love that I am much to old for this....I plan on trying to switch back....who wants to be in charge of breaking the news to the little mister?
Kyler doesn't seem to mind and I quote "I do like that Jett doesn't try to talk to me when I am trying to fall asleep." I can't help but laugh at that. While Kyler has never seemed to appreciate pillow talk and how inevitably as soon as the lights were turned off my mind seems to turn on....I was quick to point out that I have never once woke him up with a sippy cup to the head demanding a refill....shouldn't that count for something?
But then the other night something incredible happened...I have been hesitant to share this but sometimes we all need a sweet reminder that the veil to heaven at times is so thin, especially for the little ones.
Jett had been asleep for about an hour. I was in the neighboring room quietly typing away when I heard him start laughing....it was a genuine laugh....that is the only kind that Jett knows how to do. I stopped what I was doing and was heading to the door when he said in a loud teasing voice...GRANDPA! I stopped in my tracks and let the feeling of warmth wash over me. My Dad passed away when I was a little girl, that has been on my mind an awful lot lately.....My almost 3.5 year old has only a handful of words with none being as clear or complex as the word GRANDPA! My heart was smiling.
The next morning we were sitting at the breakfast table and I casually asked Jett and Winnie if their Grandpa was with them last night....They quickly looked at each other out of the corners of their eye which was succeeded by a fit of laughter. I loved it.....Later In a quiet moment I asked Jett yet again and his response was something that I had never once heard being uttered from those kissable lips of his a simple and quiet"ya."
- I have never had a problem with cursing....I mean c'mon my Mother raised me to be a lady....or so she thought....A few weeks ago it was morning and Kyler and I were rushing around frantically getting ready when we both stopped dead in our tracks. Our little so incredibly sweet soft spoken Winnie stubbed her toe.....
And exclaimed in the cutest little voice "Gosh Damn-it!!" Kyler quickly looked over at me disapproving eyes shaking his head having a hard time masking his smile and said in a drawn out accusing voice "CATE...." I stood there wearing an expression of contriteness
Whoops....but still might have been one of the cutest things I have ever heard!
Oh how we are loving the little personality that is emerging....trust me when I say it is a good one. She loves to dance and shake her tiny little booty when ever music comes on and bop her little shoulders and say "huba-huba!"
(Don't be alarmed she picked up that phrase from a children cartoon and not from me......but no shave November is doing my husband gooood...so maybe I will have to chant it right along with Winnie when her Daddy gets home from work tonight;)
February 2014
Jett
You lost your little construction hat from school. I trespassed to get it (in somones backyard) I could never bare to see you disapointed
You call pizza peepee and cookies poo poo (thanks to GF diet )
your face mircously cleared up for you interview your aunts hillarys prayers are extra strong
you went to the doctors and did amazing such a big boy! I cried tears of joy! you weighed 41 pounds!
You started sleeping in your own bed. you and wynn share a room! it has been wonderful!
You are really starting to say words!! and label everything!!
you love to get a "souvenir" from where ever you go! I don't think you have ever left your Grandma JOhnsons house empty handed.
*you were so upset....I couldn't calm you down you asked me to "wok" you so that is exactly what I did. :) and loved every second of it....stop growing up...please and thank you.
*we asked you who you wanted to change your diaper...you put your finger on your chin furrowed your eyebrows and said uuummmm.
Wynn
winnie you were lost for 40 minutes I had to call 911 you ended up being locked in the bathroom!
+you love to pretend to talk to dallas on the phone.
+You have become such a daddies girl
You love caring around a purse! and jumping and climbing doing your makeup and hiding...and of course still love being held! with your coat on and shoes (you love shoes) you weighed 27 pounds!
+I told you it was time for bed and you ran and hid in our tiny pantry,,,I heard giggling and found you standing there with your eyes closed.
You love to dance!
Shortly after getting home from preschool my children were helping me bring in groceries...I heard the garage door open and then heard a car peel off behind our house....I ran outside and Winnie boots were there but she was nowhere in site!
Jett and I quickly ran around our home yelling her name! I ran back inside and searched the house from top to bottom.....I started panicking...and realized my cell phone must have fallen out of my pocket. I ran down my long dirt road checking our ditches...my cell phone had fallen out of my pocket....I checked my house again...Jett was frantically yelling her name too...By this point she was missing for nearly 30 minutes and I was beyond the point of hysteria. I ran down the road jett running behind me. we were both completely winded! I screamed her name and screamed that we needed help and begged for someone to help us. I made it to my closest neighbors house and two construction workers were running towards me. I told them I couldn't find my baby!! they called 911. The dispatcher kept telling me that I needed to calm down. I kept yelling " Oh my goodness, where is winnie!" she asked me what she was wearing and I could hear Syrians coming toward our house!
I begged the dispatcher to prayer she would be okay..My home was suddenly being flooded with strangers. I looked down at Jett who was red and wide eyed.
Did someone take her....was she in the canal?? I couldn't breathe. I have never felt so terrified.
My hand went to open the bathroom door and it was locked!!! I banged on the door and heard the sweetest cry! She was missing for 40 minutes! The officers and construction workers opened up the door! I hugged her and Jett kissed her all over her face and wiped all of our tears....i have never felt such tremendous gratitude she was safe! The sweetest peace and calm washed over us! I am blessed.....and will probably never let her off of my hip again!
MARCH 2014
Jett
+today your sister wanted some of your noodles....typically you will give her 3 or 4 off of your plate but today you gave her a "bittteee" it was so beautiful and such a tender moment the joy in your eyes while you fed her.
+You love your Grandma shari new do "weo" you will jump in the car and buckle in so quickly if I tell you where we are going. Once you are there you will SO SO lightly pet his soft coat and bring the leash over to your grandma to help her take him for a walk. you are the sweetest. Winnie loves him too....just not quite as much.
wynn
+you were walking on a box of cereal on the ground and I tried to help you jump off. you slipped and fell and I thought you broke your nose. you kept saying "nose...owie" I could not have felt any worse then I did. Sometimes I think the reason that I don't mind holding you all day is because it is safer in my arms...you are a dare devil...so many people have commented on how you are so brave....you got that from you dad...I am terribly afraid of heights :)
+you told me "mama pretty" I melted. You love to put lipstick all over your face first thing in the morning..haha and copy all the little things I do. you are our sunshine and make me feel so honored to be your "mama"
You let me paint your nails and it was such a heating beautiful experience...I didn't worry as much about you.
+I made cupcakes for Jetts class and they ended up being burnt frostiness messes....I brought them anyway....I looked in the back seat of our car and you at eaten the top off of half of them. :)
+you have always been our social butterfly! lately when we take you out you cling to your dad and I for dear life....I am trying not to be worried.
You love root beer and are such a great eater...you area always trying to sneak to the couch
you are such a sweet little girl and such a joy,,,,but you do LOVE to take off your clothes and I am constantly asking you to get your finger out of your nose....you just tell me "No"
You answer "ya" to most questions and love to wear your black church shoes and ask for MIck=me on my phone.
APRIL 2014
Jett
Wynn
The age old question that nearly every mother faces....If given a choice would we rather have our body or mind back? I would gladly take either! Is that a choice?
If memories were to be recorded in my mind alone this absent minded mother of two has it by good authority (if history is any indicator ;) that those sweet memories will have a very uncertain future......So my fingers have now been put up to the task of writing and remembering the sweet stories and thoughts that will makeup my children history and childhood. That folks is delegating at its best ;) My mind is so relieved and seemingly forgetting things as quickly as I type.
-This past Sunday was spent at my children Grandma Shari house. It was magic watching Jett run after and play with all of his cousins. I noticed that all the little boys had buzzed heads and dirt under their finger nails....that my friends are what a little boys childhood should be made of....Jett laughed from his soul at every silly antic his cousins tried...oh and tried to mimic them....Before we were leaving Jetts cousin noticed that Jett has only a few words and seemed to acknowledged Jetts attempt at conversing with him with a giant grin!
He turned to me and said "I didn't know Jett could speak Spanish!?" haha
Now if only I could teach that little boy english ;) As we were leaving Jett turned to Danny and said "BYE-BYE" Danny responded in solemn voice "Bye Jett, I love you too..." I was in the corner in a big puddle melting.
- I am really not even sure how it happened, Just that id did. Some how Jett that clever child of mine tricked me into switching beds with him....Now he is enjoying my glorious king size bed and trust me when I say there is definitely not room for three! While I am upstairs sleeping on a boat. The trickery began a few months ago and shows no end in site.....I mostly miss sleeping with my kids Dad (that is meant in a very P.G. sort of way ;) I wake up sore every morning and tell my little love that I am much to old for this....I plan on trying to switch back....who wants to be in charge of breaking the news to the little mister?
Kyler doesn't seem to mind and I quote "I do like that Jett doesn't try to talk to me when I am trying to fall asleep." I can't help but laugh at that. While Kyler has never seemed to appreciate pillow talk and how inevitably as soon as the lights were turned off my mind seems to turn on....I was quick to point out that I have never once woke him up with a sippy cup to the head demanding a refill....shouldn't that count for something?
But then the other night something incredible happened...I have been hesitant to share this but sometimes we all need a sweet reminder that the veil to heaven at times is so thin, especially for the little ones.
Jett had been asleep for about an hour. I was in the neighboring room quietly typing away when I heard him start laughing....it was a genuine laugh....that is the only kind that Jett knows how to do. I stopped what I was doing and was heading to the door when he said in a loud teasing voice...GRANDPA! I stopped in my tracks and let the feeling of warmth wash over me. My Dad passed away when I was a little girl, that has been on my mind an awful lot lately.....My almost 3.5 year old has only a handful of words with none being as clear or complex as the word GRANDPA! My heart was smiling.
The next morning we were sitting at the breakfast table and I casually asked Jett and Winnie if their Grandpa was with them last night....They quickly looked at each other out of the corners of their eye which was succeeded by a fit of laughter. I loved it.....Later In a quiet moment I asked Jett yet again and his response was something that I had never once heard being uttered from those kissable lips of his a simple and quiet"ya."
- I have never had a problem with cursing....I mean c'mon my Mother raised me to be a lady....or so she thought....A few weeks ago it was morning and Kyler and I were rushing around frantically getting ready when we both stopped dead in our tracks. Our little so incredibly sweet soft spoken Winnie stubbed her toe.....
And exclaimed in the cutest little voice "Gosh Damn-it!!" Kyler quickly looked over at me disapproving eyes shaking his head having a hard time masking his smile and said in a drawn out accusing voice "CATE...." I stood there wearing an expression of contriteness
Whoops....but still might have been one of the cutest things I have ever heard!
Oh how we are loving the little personality that is emerging....trust me when I say it is a good one. She loves to dance and shake her tiny little booty when ever music comes on and bop her little shoulders and say "huba-huba!"
(Don't be alarmed she picked up that phrase from a children cartoon and not from me......but no shave November is doing my husband gooood...so maybe I will have to chant it right along with Winnie when her Daddy gets home from work tonight;)
February 2014
Jett
You lost your little construction hat from school. I trespassed to get it (in somones backyard) I could never bare to see you disapointed
You call pizza peepee and cookies poo poo (thanks to GF diet )
your face mircously cleared up for you interview your aunts hillarys prayers are extra strong
you went to the doctors and did amazing such a big boy! I cried tears of joy! you weighed 41 pounds!
You started sleeping in your own bed. you and wynn share a room! it has been wonderful!
You are really starting to say words!! and label everything!!
you love to get a "souvenir" from where ever you go! I don't think you have ever left your Grandma JOhnsons house empty handed.
*you were so upset....I couldn't calm you down you asked me to "wok" you so that is exactly what I did. :) and loved every second of it....stop growing up...please and thank you.
*we asked you who you wanted to change your diaper...you put your finger on your chin furrowed your eyebrows and said uuummmm.
Wynn
winnie you were lost for 40 minutes I had to call 911 you ended up being locked in the bathroom!
+you love to pretend to talk to dallas on the phone.
+You have become such a daddies girl
You love caring around a purse! and jumping and climbing doing your makeup and hiding...and of course still love being held! with your coat on and shoes (you love shoes) you weighed 27 pounds!
+I told you it was time for bed and you ran and hid in our tiny pantry,,,I heard giggling and found you standing there with your eyes closed.
You love to dance!
Shortly after getting home from preschool my children were helping me bring in groceries...I heard the garage door open and then heard a car peel off behind our house....I ran outside and Winnie boots were there but she was nowhere in site!
Jett and I quickly ran around our home yelling her name! I ran back inside and searched the house from top to bottom.....I started panicking...and realized my cell phone must have fallen out of my pocket. I ran down my long dirt road checking our ditches...my cell phone had fallen out of my pocket....I checked my house again...Jett was frantically yelling her name too...By this point she was missing for nearly 30 minutes and I was beyond the point of hysteria. I ran down the road jett running behind me. we were both completely winded! I screamed her name and screamed that we needed help and begged for someone to help us. I made it to my closest neighbors house and two construction workers were running towards me. I told them I couldn't find my baby!! they called 911. The dispatcher kept telling me that I needed to calm down. I kept yelling " Oh my goodness, where is winnie!" she asked me what she was wearing and I could hear Syrians coming toward our house!
I begged the dispatcher to prayer she would be okay..My home was suddenly being flooded with strangers. I looked down at Jett who was red and wide eyed.
Did someone take her....was she in the canal?? I couldn't breathe. I have never felt so terrified.
My hand went to open the bathroom door and it was locked!!! I banged on the door and heard the sweetest cry! She was missing for 40 minutes! The officers and construction workers opened up the door! I hugged her and Jett kissed her all over her face and wiped all of our tears....i have never felt such tremendous gratitude she was safe! The sweetest peace and calm washed over us! I am blessed.....and will probably never let her off of my hip again!
MARCH 2014
Jett
+today your sister wanted some of your noodles....typically you will give her 3 or 4 off of your plate but today you gave her a "bittteee" it was so beautiful and such a tender moment the joy in your eyes while you fed her.
+You love your Grandma shari new do "weo" you will jump in the car and buckle in so quickly if I tell you where we are going. Once you are there you will SO SO lightly pet his soft coat and bring the leash over to your grandma to help her take him for a walk. you are the sweetest. Winnie loves him too....just not quite as much.
wynn
+you were walking on a box of cereal on the ground and I tried to help you jump off. you slipped and fell and I thought you broke your nose. you kept saying "nose...owie" I could not have felt any worse then I did. Sometimes I think the reason that I don't mind holding you all day is because it is safer in my arms...you are a dare devil...so many people have commented on how you are so brave....you got that from you dad...I am terribly afraid of heights :)
+you told me "mama pretty" I melted. You love to put lipstick all over your face first thing in the morning..haha and copy all the little things I do. you are our sunshine and make me feel so honored to be your "mama"
You let me paint your nails and it was such a heating beautiful experience...I didn't worry as much about you.
+I made cupcakes for Jetts class and they ended up being burnt frostiness messes....I brought them anyway....I looked in the back seat of our car and you at eaten the top off of half of them. :)
+you have always been our social butterfly! lately when we take you out you cling to your dad and I for dear life....I am trying not to be worried.
You love root beer and are such a great eater...you area always trying to sneak to the couch
you are such a sweet little girl and such a joy,,,,but you do LOVE to take off your clothes and I am constantly asking you to get your finger out of your nose....you just tell me "No"
You answer "ya" to most questions and love to wear your black church shoes and ask for MIck=me on my phone.
APRIL 2014
Jett
Wynn