Well I finally decided last night that I would post on facebook about EK's diagnosis. Up until yesterday I just not been ready to share that information with "everyone". After posting a link to our blog for EK I was touched tremendously by so many friends. Some friends who I haven't seen in years. Just to know that we have so many people wrapping our little Eva Kate in prayer brings tears to my eyes. As many of you have already said, through this storm in our lives, He will bring something wonderful from all of this. My prayer each day as that I will remain strong and help someone else out through our trials.
Eva Kate had a good day. She is making better eye contact and actually giving us "kisses" on demand. This may sound silly to some of you, but to never have your child give you kisses or hugs or say "I love you" is so upsetting some days. Her hugs up until recently have been her leaning into us with her back. It's so wonderful to bend down to her level and have her run into our arms and hug us and give us a kiss when we ask for one. She even kissed Mollie tonight. It's the little things I find myself longing for.
Again.... I can't thank you all enough for those of you who have messaged me, sent text messages, emails, and written post on my facebook wall giving me encouragement for what lies ahead. I know with His strength and many prayers we will over come this mountain.
Much Love!
LC
Saturday, July 21, 2012
Friday, July 20, 2012
Beach Trip with the Stumans
Eva Kate did play a little with Allie, our friends 3 year old, but mostly did her own thing. I am still concerned about her interaction with other children, especially her interaction with Mollie. Mollie is so interested in her big sister. Let me rephrase that... Mollie adores Eva Kate. My hope is that one day the girls will play together and be close. :)
EK was so good when we went out to dinner. We packed her a CF dinner and the iPad and she was great while we enjoyed dinner at some local seafood places. The only set back we had with the CF diet was a random lady on the beach giving her some cheeze its. EK ran up to the lady's beach set up and she was having her cheeze its and beer and thought she would be nice and give EK a few to snack on with out asking us. Ahhhhh!!!! As far as the diet goes EK will be CF for three weeks on Sunday. I personally have not seen any great improvements in her speech or her interactions.
Hated to see our trip come to an end on Wednesday morning, but it was nice to get back into a routine. EK went back to school on Thursday and came home sick from school with a stomach bug that Mommy caught too :-(.
Thursday was a crazy day. I worked for STV Wellness 1/2 a day and then met Paul at Hand in Hand to have Mollie evaluated for delay of gross motor skills (not rolling over consistently, crawling, pulling up, etc.) She did end up qualifying for services through early intervention too. I'm so glad that we went ahead and had her evaluated now instead of second guessing ourselves like with did with EK.
After Mollie's evaluation yesterday I started with the GI symptoms (that EK was sent home from MDO with) but I thought it was just nerves from being away from home, having Mollie evaluated and so on. I woke up this morning and became violently ill with more GI bug symptoms and only made it 1/2 way to work before having to turn around and come home. This has never happened in 7 1/2 years of working there. Feeling better now- not sure it was truly a bug I got from EK (because she seems fine) or if it is a combination of a lot of things. I feel like with all we've had going that my immune system has been weaker due to added stress and worry about my girls.
Thursday, July 12, 2012
Still can't find a good milk substitute
We've encountered some pretty brutal tirades over the last 24-48 hours whenever we try to give Eva milk. Last night she rolled around screaming for probably 15 minutes because she do desperately wanted her juice. So far we've tried the following:
West Soy Rice Beverage
Silk Almond Milk (unsweetened)
Silk Dark Chocolate Almond Milk
Silk Almond Milk (regular)
We've also tried different combination of the above as well as watering it down. Whenever we give her the milk she'll take a sip of it, look at it funny, then carry it to the kitchen, lay it on the counter, and try to open the fridge saying, "Juice. Juice." When I say, "No juice. Try the milk," she proceeds to throw the milk down, lay down, and have a tantrum.
I've almost decided that she's just gotten to where she likes the diluted apple juice so much that it's all she wants. Several weeks ago she would finish an entire sippy cup of almond milk, even if it took all day. Now she won't even touch it.
I guess we'll just have to find some good, alternative sources for calcium and vitamin D.
West Soy Rice Beverage
Silk Almond Milk (unsweetened)
Silk Dark Chocolate Almond Milk
Silk Almond Milk (regular)
We've also tried different combination of the above as well as watering it down. Whenever we give her the milk she'll take a sip of it, look at it funny, then carry it to the kitchen, lay it on the counter, and try to open the fridge saying, "Juice. Juice." When I say, "No juice. Try the milk," she proceeds to throw the milk down, lay down, and have a tantrum.
I've almost decided that she's just gotten to where she likes the diluted apple juice so much that it's all she wants. Several weeks ago she would finish an entire sippy cup of almond milk, even if it took all day. Now she won't even touch it.
I guess we'll just have to find some good, alternative sources for calcium and vitamin D.
Tuesday, July 10, 2012
The Gluten/Casein Free Diet
One of the first things we are going to try is the Gluten Free/Casein Free (GFCF) diet. Prior to Eva's diagnosis we heard a success story from a friend who uses it with her autistic son, so once we received the diagnosis we quickly started researching it.
There is a plethora of information on the GFCF diet on the internet, so I won't bore you with the details. In short gluten is found in wheat products (so no breads of any kind) and is sometimes used as a filler in other foods, like hot dogs. It can even be found in cleaning products, toothpaste, shampoo, laundry detergent, and make-up.
Casein is a protein found in dairy products. This one is much easier to avoid, but it does mean that Eva can no longer have her beloved milk or cheese. Eva would drink as much as 25 ounces of milk a day and have a serving of cheese at at least one meal.
If children do have an intolerance or allergy to gluten or casein, then ingesting these foods has an opiate-like affect. Because of this, when you remove gluten or casein from their diet they can go through a withdrawal period, just like someone who is breaking a heroin addiction.
We started the casein free (CF) diet first and will hopefully add the GF part in about a month. This past Sunday, July 8, marked the first day of Eva's CF diet. The only thing we're struggling with so far is finding a milk substitute that Eva will drink. We've been giving her a combination of unsweetened Silk almond milk and dairy milk for a little over a month with some success. When given only almond milk she would maybe drink half of it, and on rare occasion would drink the entire sippie cup over the course of a day.
Since she wasn't doing great with the almond milk we decided on Sunday to try West Soy Rice Beverage. This was a huge mistake. She took one sip and quickly threw it down begging for juice. We tried the rice milk again later that night with the same reaction. So last night I tried mixing half almond milk and rice milk...only to get the same reaction. Giving up on the rice milk this morning I decided to just give her the almond milk. She would usually drink at least half of it before putting it up. Today she took a sip and threw it down begging again for juice. I'm afraid we've completely turned her away from fake milks. If you know of any good milk substitutes please let me know! I have a feeling we'll just have to start giving her calcium and vitamin D supplements.
One of her favorite breakfast foods was cheese toast. We'd simply put bread in the toaster, then melt a slice of American cheese over it in the microwave. To replace this I found some casein free American "cheese" slices in the refrigerated soy section at Earth Fare. Eva took a bite, looked at it with a bewildered expression, then put it down. She did at least take a second bite, which was encouraging, but that was it. When I tried it I realized her frustration. The texture was weird and it tasted nothing like cheese. I didn't think it tasted particularly bad, but it just didn't taste like cheese. Kinda like when you think you're about to get a sip of water and it turns out to be Sprite.
We'll keep posting updates on her CF diet and the foods we try.
There is a plethora of information on the GFCF diet on the internet, so I won't bore you with the details. In short gluten is found in wheat products (so no breads of any kind) and is sometimes used as a filler in other foods, like hot dogs. It can even be found in cleaning products, toothpaste, shampoo, laundry detergent, and make-up.
Casein is a protein found in dairy products. This one is much easier to avoid, but it does mean that Eva can no longer have her beloved milk or cheese. Eva would drink as much as 25 ounces of milk a day and have a serving of cheese at at least one meal.
If children do have an intolerance or allergy to gluten or casein, then ingesting these foods has an opiate-like affect. Because of this, when you remove gluten or casein from their diet they can go through a withdrawal period, just like someone who is breaking a heroin addiction.
We started the casein free (CF) diet first and will hopefully add the GF part in about a month. This past Sunday, July 8, marked the first day of Eva's CF diet. The only thing we're struggling with so far is finding a milk substitute that Eva will drink. We've been giving her a combination of unsweetened Silk almond milk and dairy milk for a little over a month with some success. When given only almond milk she would maybe drink half of it, and on rare occasion would drink the entire sippie cup over the course of a day.
Since she wasn't doing great with the almond milk we decided on Sunday to try West Soy Rice Beverage. This was a huge mistake. She took one sip and quickly threw it down begging for juice. We tried the rice milk again later that night with the same reaction. So last night I tried mixing half almond milk and rice milk...only to get the same reaction. Giving up on the rice milk this morning I decided to just give her the almond milk. She would usually drink at least half of it before putting it up. Today she took a sip and threw it down begging again for juice. I'm afraid we've completely turned her away from fake milks. If you know of any good milk substitutes please let me know! I have a feeling we'll just have to start giving her calcium and vitamin D supplements.
One of her favorite breakfast foods was cheese toast. We'd simply put bread in the toaster, then melt a slice of American cheese over it in the microwave. To replace this I found some casein free American "cheese" slices in the refrigerated soy section at Earth Fare. Eva took a bite, looked at it with a bewildered expression, then put it down. She did at least take a second bite, which was encouraging, but that was it. When I tried it I realized her frustration. The texture was weird and it tasted nothing like cheese. I didn't think it tasted particularly bad, but it just didn't taste like cheese. Kinda like when you think you're about to get a sip of water and it turns out to be Sprite.
We'll keep posting updates on her CF diet and the foods we try.
So just how autistic is Eva?
One of the things we're struggling with right now is determining where exactly on the autism spectrum Eva falls. When we asked the team at Mitchel's Place (where we got the diagnosis) they kinda fumbled around the question and said Eva was "somewhere in the middle." Kinda vague, eh? I suppose it was simply a catch all to cover their rear ends. Technically EVERY autistic kid is somewhere in the middle...unless he or she is the most autistic kid in the history of the ultraverse.
One of the books I'm currently reading is Ten Things Every Child with Autism Wishes You Knew, by Ellen Notbohm. At the beginning of the book Notbohm gives a very brief run down of all ten things, then one-by-one addresses them in subsequent chapters. As I was reading the run down of the ten things there were several I have yet to see displayed in Eva.
She is not, by any means, a picky eater. She will often try whatever we put in front of her. She may not like it, but as long as she tries it we're happy. Even if she spits it out.
She does not have an aversion to different textures. She loves finger painting, playing in the dirt & mud, will sit in and play with sand, and plays with playdoh and clay. She also is completely comfortable walking barefoot on any surface - carpet, hardwoods, grass, sand, pebbles, concrete, etc. While she did go through a very brief time walking on her tip toes, she does not do it anymore.
She does not have a reaction to loud noises. She has even helped my wife push the vacuum cleaner. (Don't worry guys, my wife only vacuums AFTER she makes my sandwich). I also haven't encountered any situations where things may be inaudible to me, but bother her...like buzzing fluorescent lights. She can eat in a loud restaurants without any problem.
She does not have any real noticeable stimming behaviors (rocking, hand flapping, etc.). Like the tip toe walking, she did once flap her arms when excited, but it only lasted a week or two.
The signs of autism Eva does show include a severe lack in verbal skills. She was recently evaluated to be in the 15-18 month range verbally even though she's 34 months old. She does not play with same-aged peers and she really doesn't even acknowledge her 11 month old sister.
Eva is currently seeing two therapists, and both were surprised she received an ASD diagnosis. They both believe that Eva is in the high functioning category, but we are not using that as an excuse to take her diagnosis lightly. We're pressing forward as if she has full blown ASD.
One of the books I'm currently reading is Ten Things Every Child with Autism Wishes You Knew, by Ellen Notbohm. At the beginning of the book Notbohm gives a very brief run down of all ten things, then one-by-one addresses them in subsequent chapters. As I was reading the run down of the ten things there were several I have yet to see displayed in Eva.
She is not, by any means, a picky eater. She will often try whatever we put in front of her. She may not like it, but as long as she tries it we're happy. Even if she spits it out.
She does not have an aversion to different textures. She loves finger painting, playing in the dirt & mud, will sit in and play with sand, and plays with playdoh and clay. She also is completely comfortable walking barefoot on any surface - carpet, hardwoods, grass, sand, pebbles, concrete, etc. While she did go through a very brief time walking on her tip toes, she does not do it anymore.
She does not have a reaction to loud noises. She has even helped my wife push the vacuum cleaner. (Don't worry guys, my wife only vacuums AFTER she makes my sandwich). I also haven't encountered any situations where things may be inaudible to me, but bother her...like buzzing fluorescent lights. She can eat in a loud restaurants without any problem.
She does not have any real noticeable stimming behaviors (rocking, hand flapping, etc.). Like the tip toe walking, she did once flap her arms when excited, but it only lasted a week or two.
The signs of autism Eva does show include a severe lack in verbal skills. She was recently evaluated to be in the 15-18 month range verbally even though she's 34 months old. She does not play with same-aged peers and she really doesn't even acknowledge her 11 month old sister.
Eva is currently seeing two therapists, and both were surprised she received an ASD diagnosis. They both believe that Eva is in the high functioning category, but we are not using that as an excuse to take her diagnosis lightly. We're pressing forward as if she has full blown ASD.
Monday, July 9, 2012
Starting our walk with autism
If you've stumbled across this blog you're either a family member or some random other person out there who may also be facing the challenges of autism in your children or someone you love. If you're in the second group I hope you can find something in here that can be of use as you look for ways to work with ASD (Autism Spectrum Disorder). This blog will serve two purposes. First, it is a journal for me and my wife so we can keep track of the things we try, what works, what doesn't work, how often it was tried, etc. Second, if we find something that is incredibly successful hopefully someone else out there can benefit from our story.
We're your typical, middle class, white, American family. I'm Paul (a teacher), and I married Lisa (a nurse) in 2005. We had our first child, Eva Kate, in September of 2009 and our second child, Mollie, in August of 2011.
Eva seemed to progress normally. She met all her typical milestones in her first 12 months. She rolled over, sat up, babbled, crawled, and played like every other baby. She was the perfect baby. She was extremely happy, smiley, and hardly every fussed. The nursery workers were always delighted to keep her because she was the easiest kid to care for. At home she always did a great job entertaining herself and never really needed our attention unless she was hungry or sleepy. We considered ourselves lucky...little did we know that such extreme levels of independence could be a sign of autism.
Eva's first slight sign of delay was that she didn't walk until 13 months. Even though all our other friends' kids walked earlier, this didn't bother us because she was only about a month or so behind her peers. It wasn't until she was about 18 months and was drastically behind her same-aged peers in verbal skills that we noticed there might be something wrong. While her peers were able to carry on simple conversation, make verbal requests, and follow directions, we were happy if Eva would just repeat one word. Still, it didn't bother us TOO much because she did show small signs of improvement...plus she was the only kid her age who could recognize and give the sounds of almost all 26 letters.
At 23 months we started to become more concerned because her peers were engaging in meaningful conversation and Eva wasn't even responding to her name. We signed her up for a mother's day out (MDO) program at our church thinking that getting her around her peers more often would help. After 5 months of MDO and still no improvement we finally came to grips with the possibility that something could be significantly wrong.
Through a couple of connections we were able to be expedited through the wait list at a local early intervention center and her initial evaluation was at 30 months (February 2012). They said the different tests and evaluation systems had her anywhere from 15 to 21 months developmentally, which qualified Eva for their services. At 33 months we also paid to have a full evaluation at Mitchell's Place (local center that specializes in ASD) and our autism suspicion was confirmed.
We received the official ASD diagnosis almost two weeks ago (June 29, 2012) and ever since we have been inundating ourselves with books, articles, blogs, and anything else we can use to educate ourselves on autism. As we continue to learn and try new things we'll update the blog. Please reply with any suggestions!
We're your typical, middle class, white, American family. I'm Paul (a teacher), and I married Lisa (a nurse) in 2005. We had our first child, Eva Kate, in September of 2009 and our second child, Mollie, in August of 2011.
Eva seemed to progress normally. She met all her typical milestones in her first 12 months. She rolled over, sat up, babbled, crawled, and played like every other baby. She was the perfect baby. She was extremely happy, smiley, and hardly every fussed. The nursery workers were always delighted to keep her because she was the easiest kid to care for. At home she always did a great job entertaining herself and never really needed our attention unless she was hungry or sleepy. We considered ourselves lucky...little did we know that such extreme levels of independence could be a sign of autism.
Eva's first slight sign of delay was that she didn't walk until 13 months. Even though all our other friends' kids walked earlier, this didn't bother us because she was only about a month or so behind her peers. It wasn't until she was about 18 months and was drastically behind her same-aged peers in verbal skills that we noticed there might be something wrong. While her peers were able to carry on simple conversation, make verbal requests, and follow directions, we were happy if Eva would just repeat one word. Still, it didn't bother us TOO much because she did show small signs of improvement...plus she was the only kid her age who could recognize and give the sounds of almost all 26 letters.
At 23 months we started to become more concerned because her peers were engaging in meaningful conversation and Eva wasn't even responding to her name. We signed her up for a mother's day out (MDO) program at our church thinking that getting her around her peers more often would help. After 5 months of MDO and still no improvement we finally came to grips with the possibility that something could be significantly wrong.
Through a couple of connections we were able to be expedited through the wait list at a local early intervention center and her initial evaluation was at 30 months (February 2012). They said the different tests and evaluation systems had her anywhere from 15 to 21 months developmentally, which qualified Eva for their services. At 33 months we also paid to have a full evaluation at Mitchell's Place (local center that specializes in ASD) and our autism suspicion was confirmed.
We received the official ASD diagnosis almost two weeks ago (June 29, 2012) and ever since we have been inundating ourselves with books, articles, blogs, and anything else we can use to educate ourselves on autism. As we continue to learn and try new things we'll update the blog. Please reply with any suggestions!
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