http://nationalautismassociation.org/the-wrong-questions-are-being-asked-about-mikaela-lynch/
This article above about a little girl who wondered away from home, found a body of water, and drowned. She had Autism and couldn't speak. And her mommy only took her eyes off of her for just moments and this is what happened.
You see Abbie has autism, she loves water, and I am so scared she will wonder away. IT IS MY GREATEST FEAR.
People just don't understand! They blame the parents. Let me ask you - as a parent of a "typical child" do you ever take your eyes off your child. Of course you do, you let them play in there room, you let them play outside in the back yard, what about the park to you worry they will wonder off, most likely No.
But a parent of a child with Autism can't do that, we must be with our child all the time because they can get hurt or wonder off so easily - and it is not their fault, it is not the parent's fault.
Every day we work with Abbie to respond to us when we call her name, but she doesn't all the time, she sometime comes to us sometimes don't. My experience any time we are around the water, she runs right to it. There have been several times I got to her before she fell in! The fear can be overwhelming.
I just wish people would stop judging - it is hard enough that our children are ridiculed, bullied, treated poorly by teachers that people just assume that when a child with Autism is hurt it is the parents fault! Those parents in the article above are devastated there child died, and they blame themselves for taking theirs eyes off of her for just one second. Because unfortunately it only takes a second!
Thursday, May 16, 2013
Wednesday, May 15, 2013
ABBIE IS EATING
So as you are fully aware one of our biggest struggles is Abbie sensory issues with food.
Over the last few weeks, Abbie has started to explore and eat different foods and different textures. This is the most amazing thing you could ever see. She will even try things with use prompting us. She has tried chicken, turkey, tuna, ham! She had never tried or even allowed to have these put in her mouth because of texture alone. Now she is eating a little of it.
She is now eating consistently carrots, peas, green beads and of course her mac and cheese. What is even more amazing is she is trying other types of mac and cheese, opening her horizons to other types of cheeses and noodles.
And just last nigh she ate noodles with RED sauce. RED Sauce. AMAZING if I have to say so my self.
Even with everything going on in her little life, all the small things she has to overcome. She is now exploring food! This is wonderful. We can start to introduce many different food, flavors, and especially good healthy calories. This couldn't make me more happy.
I want her to be strong and healthy and she is on her way! Way to go Abbie. We are so excited!
Over the last few weeks, Abbie has started to explore and eat different foods and different textures. This is the most amazing thing you could ever see. She will even try things with use prompting us. She has tried chicken, turkey, tuna, ham! She had never tried or even allowed to have these put in her mouth because of texture alone. Now she is eating a little of it.
She is now eating consistently carrots, peas, green beads and of course her mac and cheese. What is even more amazing is she is trying other types of mac and cheese, opening her horizons to other types of cheeses and noodles.
And just last nigh she ate noodles with RED sauce. RED Sauce. AMAZING if I have to say so my self.
Even with everything going on in her little life, all the small things she has to overcome. She is now exploring food! This is wonderful. We can start to introduce many different food, flavors, and especially good healthy calories. This couldn't make me more happy.
I want her to be strong and healthy and she is on her way! Way to go Abbie. We are so excited!
Sunday, April 7, 2013
Sleep is Over Rated!!
So it is always a hit or miss when it comes to sleep. Abbie will go a while and sleep through the night, and then NOT.
And so far it has been NOT. You would never know it by looking at Abbie. She is so full of energy and happiness, you would never know she is working on just hours of sleep at a time.
From what I know this can be typical behavior for a child with Autism. But I can tell you as a parent it is the most frustrating and hardest part to deal!
Most parents have sleep deprivation during the very early years of childhood, because the child has to eat every so many hours, but then it passes.
I think I have been working on sleep deprivation for nearly 4 years. Course it is so much worse when Abbie routine is broken in some way. It has been even more so since Andy has been sick. Since Andy hasn't been home for long period of time, since October 2012, it has been so much harder.
You see when Abbie routine is messed with in any way, she doesn't get up set. She goes with the flow, but where is shows is in her Sleep. Sleeping for a few hours, waking up upset or happy, then going back to sleep. Sometime multiple times a night.
It is just hard! No one really understand it, has much as parents with children whom have Autism dx.
So I am tired! When I am tired it makes it even harder!
But the best is Abbie is always HAPPY! That is what drives me to keep going!!
And so far it has been NOT. You would never know it by looking at Abbie. She is so full of energy and happiness, you would never know she is working on just hours of sleep at a time.
From what I know this can be typical behavior for a child with Autism. But I can tell you as a parent it is the most frustrating and hardest part to deal!
Most parents have sleep deprivation during the very early years of childhood, because the child has to eat every so many hours, but then it passes.
I think I have been working on sleep deprivation for nearly 4 years. Course it is so much worse when Abbie routine is broken in some way. It has been even more so since Andy has been sick. Since Andy hasn't been home for long period of time, since October 2012, it has been so much harder.
You see when Abbie routine is messed with in any way, she doesn't get up set. She goes with the flow, but where is shows is in her Sleep. Sleeping for a few hours, waking up upset or happy, then going back to sleep. Sometime multiple times a night.
It is just hard! No one really understand it, has much as parents with children whom have Autism dx.
So I am tired! When I am tired it makes it even harder!
But the best is Abbie is always HAPPY! That is what drives me to keep going!!
Wednesday, April 3, 2013
Abbie and The BIG GIRL BED
Oh My Goodness - WHAT IN THE WORLD WAS I THINKING!!!
Abbie is so tall now and growing like a weed. She still so very small but has grown out of her cloths length wise. Which lead me to take down the crib. I was so afraid she was going to lean over and fall out. She never once tried to get out the crib, which was great. I just thought it has to go!
We do strange things when we are under stress! And for me it was "lets take down the crib and get Abbie to sleep in the big girl bed"! Why I thought this was a bright idea while Andy is recovering from the Double Lung Transplant, I don't know. When I get something in my head to do - I am like a bull dog till it is done! So, I took down the crib two weeks ago!
First night was good, it only took 6 times and she was in the bed sleeping. The next night not as good and well it has gone down hill since. LOL.
She loves her bed and totally understand get in the bed. When I tell her it is time to go to sleep and lets get in the bed, she runs right in there and gets in bed. The problem is she won't stay in the bed. She will giggle, laugh, smile and look at you with her big beautiful dark brown eyes and lay there for about 2 mins till you are out of the room. (by the way this is where I get the most eye contact, and I will take it). Then she is up and running downing the hall laughing and giggling.
One night I was so frustrated I had to just laugh my self. Because really "It is my fault " to push this on her, but she is 4! And 4 year old sleep in big girl beds.
After almost two weeks, I broke down and bought a gate to put in the door way of her room. I just had to or this is going to be a long long ordeal.
Now Abbie goes to bed and I don't have worry about her running around the house while I am sleep. My greatest fear is for her to do this and something happen while I am sleeping. Now since the gate is up she will swing on the bed room door, bang on the closet doors, pull out her drawers. And she thinks this is just the bees knees!!! I love My Girl!!!! Just Love Her!!! I will watch all this while she does it! Crazy. And lots of "Abbie Big Girl its bed time, lets go to bed and I put her in her bed". And then she gets right back up.
Two nights ago, she actually stayed in the bed and went to sleep. But most of the time she gets her blankly and falls asleep on the floor. Once she is quite for a few minutes, I go in her room pick her up and put her in the bed. She will look at me smile and go right to sleep.
This makes bed time a long ordeal! But I know she likes being a Big Girl in her Big Girl Bed!!!
Abbie is so tall now and growing like a weed. She still so very small but has grown out of her cloths length wise. Which lead me to take down the crib. I was so afraid she was going to lean over and fall out. She never once tried to get out the crib, which was great. I just thought it has to go!
We do strange things when we are under stress! And for me it was "lets take down the crib and get Abbie to sleep in the big girl bed"! Why I thought this was a bright idea while Andy is recovering from the Double Lung Transplant, I don't know. When I get something in my head to do - I am like a bull dog till it is done! So, I took down the crib two weeks ago!
First night was good, it only took 6 times and she was in the bed sleeping. The next night not as good and well it has gone down hill since. LOL.
She loves her bed and totally understand get in the bed. When I tell her it is time to go to sleep and lets get in the bed, she runs right in there and gets in bed. The problem is she won't stay in the bed. She will giggle, laugh, smile and look at you with her big beautiful dark brown eyes and lay there for about 2 mins till you are out of the room. (by the way this is where I get the most eye contact, and I will take it). Then she is up and running downing the hall laughing and giggling.
One night I was so frustrated I had to just laugh my self. Because really "It is my fault " to push this on her, but she is 4! And 4 year old sleep in big girl beds.
After almost two weeks, I broke down and bought a gate to put in the door way of her room. I just had to or this is going to be a long long ordeal.
Now Abbie goes to bed and I don't have worry about her running around the house while I am sleep. My greatest fear is for her to do this and something happen while I am sleeping. Now since the gate is up she will swing on the bed room door, bang on the closet doors, pull out her drawers. And she thinks this is just the bees knees!!! I love My Girl!!!! Just Love Her!!! I will watch all this while she does it! Crazy. And lots of "Abbie Big Girl its bed time, lets go to bed and I put her in her bed". And then she gets right back up.
Two nights ago, she actually stayed in the bed and went to sleep. But most of the time she gets her blankly and falls asleep on the floor. Once she is quite for a few minutes, I go in her room pick her up and put her in the bed. She will look at me smile and go right to sleep.
This makes bed time a long ordeal! But I know she likes being a Big Girl in her Big Girl Bed!!!
Life with Little Abbie
Autism: It will frustrate the hell out of you and yet will make you cry with joy when the light comes on!!!
Abbie has made so much progress, I will be the first to tell you EARLY INTERVENTION is the KEY. In the last year, Abbie has made so much progress and I know if we had not done the all therapy, the preschooling, hiring the most wonderful nanny's Abbie would not be where she is today.
But she has such a long road!
My heart breaks sometimes on a daily basis, because of the items that I feel we miss with her! But then I my hear will bust with joy on those same days when she does something amazing.
I do think that typical developing children's parents take for granted what it means for their child to grow and progress at a normal rate. I will never ever take that for granted again.
Abbie is what you call 'nonverbal" right now. This is so very hard on Me, because I just want to her to talk to me so very badly. You miss the "mommy what is that", "mommy look what I did in school today", "Mommy I Love You". Will she say these thing, maybe one day but I missed it when children first start to talk around 15-18months and really talking at 2. You see Abbie is now 4!
So when she said "MOMMA" with her brows squished together. I know she wants me and not that she is just mumbling momma momma. Its progress! She is now saying "Dadda" when she sees Andy which is amazing.
The eye contact is the hardest part. I want so badly for Abbie to look at me and communicate with me! Her eye contact is improving daily but still not like typical children. Should I compare Abbie to typical children "NO" but it is still so very hard.
And feeding wow that is just a monster into itself.
I guess the hardest part in all of this, is when Andy (Daddy) started getting sick in October. It was a blessing that Abbie didn't really understand what was going on, but she did understand Daddy was not home. She would walk around looking for Daddy. Then it was like she just decided Daddy wasn't home and we go see Daddy I am not going to worry about it. She didn't know how bad Daddy was sick and that I guess is a blessing from God. But now that Daddy is at the apartment she loves being with Daddy and cuddles with Daddy which is a BIG BIG Deal. Since Abbie doesn't always want to cuddle.
I guess that is it for today!
Abbie has made so much progress, I will be the first to tell you EARLY INTERVENTION is the KEY. In the last year, Abbie has made so much progress and I know if we had not done the all therapy, the preschooling, hiring the most wonderful nanny's Abbie would not be where she is today.
But she has such a long road!
My heart breaks sometimes on a daily basis, because of the items that I feel we miss with her! But then I my hear will bust with joy on those same days when she does something amazing.
I do think that typical developing children's parents take for granted what it means for their child to grow and progress at a normal rate. I will never ever take that for granted again.
Abbie is what you call 'nonverbal" right now. This is so very hard on Me, because I just want to her to talk to me so very badly. You miss the "mommy what is that", "mommy look what I did in school today", "Mommy I Love You". Will she say these thing, maybe one day but I missed it when children first start to talk around 15-18months and really talking at 2. You see Abbie is now 4!
So when she said "MOMMA" with her brows squished together. I know she wants me and not that she is just mumbling momma momma. Its progress! She is now saying "Dadda" when she sees Andy which is amazing.
The eye contact is the hardest part. I want so badly for Abbie to look at me and communicate with me! Her eye contact is improving daily but still not like typical children. Should I compare Abbie to typical children "NO" but it is still so very hard.
And feeding wow that is just a monster into itself.
I guess the hardest part in all of this, is when Andy (Daddy) started getting sick in October. It was a blessing that Abbie didn't really understand what was going on, but she did understand Daddy was not home. She would walk around looking for Daddy. Then it was like she just decided Daddy wasn't home and we go see Daddy I am not going to worry about it. She didn't know how bad Daddy was sick and that I guess is a blessing from God. But now that Daddy is at the apartment she loves being with Daddy and cuddles with Daddy which is a BIG BIG Deal. Since Abbie doesn't always want to cuddle.
I guess that is it for today!
Monday, March 11, 2013
Friday, March 1, 2013
What a Year Can Make!
2012 - I was doing so good posting in Abbie's Blog. Got involved in what other states were doing about the Autism Insurance Laws. Updating Abbie's progress. Then Life Happened.
So here is what happened in 2012. A brief overview and I will add things I remember later. We will Start with the Big Stuff and move to the smaller stuff of accomplishments.
Daddy and Abbie had a Birthday in January of 2012. Daddy turned 44 and Abbie turned 3 years old. Such a Big Big Girl. Abbie started preschool at the county schools. So she started having big days, going to therapy in the morning and preschool in the afternoon. (no more nap time) :). Mommy started back to work to help pay for all the medical expenses that go with Autism. That is a later discussion.
April 3 Mommy had her birthday, April 4th - NaNa (Daddy's Mommy) passed away caused by Cancer. Very, Very sad and Hard Days on Daddy and Abbie's Uncles and Aunts.
Abbie started to make progress, she started making more eye contact being more aware of who is in the room, and we started Feeding therapy at Brown. Finally after waiting 9 months we got a slot for Feeding Therapy Session at Vanderbilt. Abbie started making progress with Feeding (one of hardest battles even today).
June, Abbie had a new Nanny Lindsey. Abbie and Us love Lindsey. They do all kinds of stuff, play, go out, go to park and Adventurer Science Center (Abbie loves the science center), Do Brown Home work (YAY). Many Many Activities. Abbie misses her other Nannie Diane but she finished her schooling for her Masters in OT. So she had to do her clinical rotations! But we are so very blessed to have found Lindsey (thanks to Sabrina for her recommendations)
We went on Vacation in September to our Favorite place Virgina Beach - Abbie loved the water again and even the Sand. We spent time with our friends Michelle & Savannah. Abbie started to play a little bit with Savannah and even held her hand while taking our summer pictures together. This was the start of major eye contact, and really being aware of the people around her. It is so amazing to see her come out of her little shell.
October - Daddy got sick! He had a bleed in his lungs. You see Daddy has Cystic Fibrosis, and sometimes very bad infections can cause bleeds in his Lungs. Daddy went into the hospital. Very scary for Mommy and Abbie. The first time Daddy had been away for such a long time. Daddy was in the hospital for nearly 6 weeks. Daddy and Mommy was told by Daddy's Doctors that he needed a new pair Lungs and that if he didn't get new lungs he would have maybe 6-12 months to live. Very hard news for Daddy and Mommy to hear. So Daddy's Doctors started the Lung Transplant Evaluation. Lots and Lots of tests. Daddy missed Thanksgiving so we had Thanksgiving with him. Then Daddy came home and got sick again, and went back into the hospital for another 3 weeks. Daddy missed Christmas at home so we went to Daddy. Mommy didn't want to put up Christmas decorations this year but mommy friends from work came over and helped! So Abbie loved messing with the Christmas Tree, but she had fun opening her presents. There is the overview of 2012!
So here is what happened in 2012. A brief overview and I will add things I remember later. We will Start with the Big Stuff and move to the smaller stuff of accomplishments.
Daddy and Abbie had a Birthday in January of 2012. Daddy turned 44 and Abbie turned 3 years old. Such a Big Big Girl. Abbie started preschool at the county schools. So she started having big days, going to therapy in the morning and preschool in the afternoon. (no more nap time) :). Mommy started back to work to help pay for all the medical expenses that go with Autism. That is a later discussion.
April 3 Mommy had her birthday, April 4th - NaNa (Daddy's Mommy) passed away caused by Cancer. Very, Very sad and Hard Days on Daddy and Abbie's Uncles and Aunts.
Abbie started to make progress, she started making more eye contact being more aware of who is in the room, and we started Feeding therapy at Brown. Finally after waiting 9 months we got a slot for Feeding Therapy Session at Vanderbilt. Abbie started making progress with Feeding (one of hardest battles even today).
June, Abbie had a new Nanny Lindsey. Abbie and Us love Lindsey. They do all kinds of stuff, play, go out, go to park and Adventurer Science Center (Abbie loves the science center), Do Brown Home work (YAY). Many Many Activities. Abbie misses her other Nannie Diane but she finished her schooling for her Masters in OT. So she had to do her clinical rotations! But we are so very blessed to have found Lindsey (thanks to Sabrina for her recommendations)
We went on Vacation in September to our Favorite place Virgina Beach - Abbie loved the water again and even the Sand. We spent time with our friends Michelle & Savannah. Abbie started to play a little bit with Savannah and even held her hand while taking our summer pictures together. This was the start of major eye contact, and really being aware of the people around her. It is so amazing to see her come out of her little shell.
October - Daddy got sick! He had a bleed in his lungs. You see Daddy has Cystic Fibrosis, and sometimes very bad infections can cause bleeds in his Lungs. Daddy went into the hospital. Very scary for Mommy and Abbie. The first time Daddy had been away for such a long time. Daddy was in the hospital for nearly 6 weeks. Daddy and Mommy was told by Daddy's Doctors that he needed a new pair Lungs and that if he didn't get new lungs he would have maybe 6-12 months to live. Very hard news for Daddy and Mommy to hear. So Daddy's Doctors started the Lung Transplant Evaluation. Lots and Lots of tests. Daddy missed Thanksgiving so we had Thanksgiving with him. Then Daddy came home and got sick again, and went back into the hospital for another 3 weeks. Daddy missed Christmas at home so we went to Daddy. Mommy didn't want to put up Christmas decorations this year but mommy friends from work came over and helped! So Abbie loved messing with the Christmas Tree, but she had fun opening her presents. There is the overview of 2012!
Subscribe to:
Posts (Atom)