It's been a good 6 weeks since our last update, but I suppose that's because there hasn't been a whole heckuva lot of news to share.
Eva is very slowly adding words to her repertoire. The problem we're having is getting her to actually use the words and respond to ours. You know...the same problem we've been having since day one. I guess the silver lining is that now, when she actually does decide to talk, we can actually understand a little bit of it.
We usually lay her down at night with a sippy cup of juice, and about an hour after laying her down we go in to retrieve the sippy cup and check on her. Last week, when we went to get the sippy cup we found her asleep on her bed, stark naked! On the floor we found her pajamas, a diaper (a pull-up) with a small pile of poop in it, and about 50 wipes. Apparently she was uncomfortable with the dirty diaper so she took it off and attempted to wipe herself. We took this as a sure sign that it just may be time to potty train her!
Earlier tonight when I went in to check on her and get the sippy cup she was awake on her back unzipping her pajamas. The strong smell of poop overwhelmed me, so I obviously had to change her diaper. I asked her, "Did you poo poo?" and she responded with, "Poo poo." Followed with, "diaper." I guess the next step for her would be to volunteer that info rather than waiting for us to ask her. Next week, when Christmas break starts and we're all at home we're going to work hard to potty train her and hope for the best.
On a different note Eva and Mollie are starting to interact more....in the form of fighting! It's actually pretty funny. Eva will have a toy that Mollie wants to play with, so Mollie will walk over to Eva and hold our her hand asking for the toy (she seldom snatches the toy away). Eva then willingly gives her the toy, but then breaks down crying saying, "No! No! No! Mine!"Of course Eva is strong enough to simply take it back, but I don't think she realizes it.
Eva is also finally recognizing that she has her own Elf on a Shelf...now that it's her third Christmas with him. We decided to call him Leroy...not sure where that name came from! Because Eva can't comprehend the story and that she's not supposed to touch Leroy we have to be sure to keep him out of reach during the day. He's usually hanging from a light fixture, sitting on a shelf, or something similar. She won't initiate the hunt for Leroy, and if we don't bring it up she'll go the entire day or days not giving him a second thought. However, the instant we ask, "Hey Eva. Where's Leroy?" she will start saying "Leeeeeeeeerrroyyyyy" (she tends to really draw out her words!) and walk around the house looking up until she finds him. She then stands looking at him for several seconds saying, "Leeerroyy! Leroy!"
She's also recognizing Santa Clause, but it still a little hesitant to go up to him. Trace Crossings had a Santa visit the preschool program for pictures last week. Eva wouldn't sit in his lap, but she at least stood next to him. We're still waiting for the pictures, but as soon as they get here we'll post them.
We'll try to remember to update a little more frequently!
Saturday, December 15, 2012
Saturday, October 27, 2012
Pumpkin Patch
We have a wonderful, yet cool afternoon at the Clanton Pumpkin Patch today. We met up with some old friends and made some new friends too from Charlotte and Jason's new church. We rode the Twactor Twain and Hayride out to the pumpkin patch to find out Halloween pumpkin to carve. After the pumpkin patch we all gathered at the Harley's home for chili, gumbo, cheese biscuits, and sweets. A perfect way to spend a Saturdqy evening.
Eva Kate actually played with some of the other children there tonight which is always so exciting to see.
Eva Kate actually played with some of the other children there tonight which is always so exciting to see.
Wednesday, October 24, 2012
Family Photos Tomorrow and a Busted Chin
I was monogramming EK a shirt tonight at Mom's and heard a scream. I ran down stairs to greet Toddler Dracula! Blood dripping out of her mouth and off her chin. She must have been climbing on something and fell- in the process biting her tongue and scraping her chin. Ahhhh! Hope our sweet photographer has some mad photo shopping skills.
Sunday, October 21, 2012
Great Trip to Gatlinburg
We are finally home and settling down after a 5 day trip to the Smokies. It was a great fall get-away. Eva Kate had a blast. She saw and did so many fun things: like spend time with her cousins, family friends from Georgia, went to Ober Gatlinburg to "kiddie land", saw black bears, river otters, went to Ripley's aquarium, explored nature, and much more.
She only had a handful of melt downs with sharing toys with her cousins and ending fun outings that she was really into. Overall she travelled well, ate well, slept great (because she got to sleep with Mommy and Daddy (:), and behaved pretty well. We heard her say many new two word phrases over the trip too. My favorite was when she called the mountains "Big Dinosaurs". She would repeat "Look Big Diosoars" over and over. Too cute!
We have a big week ahead. We meet with our new pediatrician this week to see what recommendations he has for the next step in getting EK evaluated by a pediatric neurologist. I'm anxious but ready to go to the next step in getting her the evaluations and help she needs.
She only had a handful of melt downs with sharing toys with her cousins and ending fun outings that she was really into. Overall she travelled well, ate well, slept great (because she got to sleep with Mommy and Daddy (:), and behaved pretty well. We heard her say many new two word phrases over the trip too. My favorite was when she called the mountains "Big Dinosaurs". She would repeat "Look Big Diosoars" over and over. Too cute!
We have a big week ahead. We meet with our new pediatrician this week to see what recommendations he has for the next step in getting EK evaluated by a pediatric neurologist. I'm anxious but ready to go to the next step in getting her the evaluations and help she needs.
Sunday, October 14, 2012
Big Changes for Mommy
Well since I posted last we have had quite a few changes. I resigned from the Birth Suites as a mother baby nurse after 7 1/2 years. It was such a hard decision to make, but one that I hope to be happy with for EK's sake. I am still going to work PRN for Wellness services and teach prenatal classes. The hours are just much better for me with EK in a 5 day a week special needs program from 7:30-10:45. We are paying quite a lot for her after care on T, W, and Th, just so I could work on the Birth Suites a few days a month.
We have really liked her new MDO (after care) but have recently been told that EK doesn't get to participate in many of the "extra" activities because she gets over stimulated. This maybe true, but I would like to know that she gets to have music time, gymnastics, dance, sports, Spanish, and chapel like her typical peers, especially since I am paying $350+ a month. I am going to have a meeting with her teachers on Tuesday to hopefully see just what she is included in and find out what her behavior is like at MDO.
On Thursday I picked EK up from MDO at 4:30 and she her other late care friends were having a snack. Four of the other children were eating together at one table and EK was at another table eating her snack alone. The late care teacher said "Eva Kate eats her snack by herself because she doesn't do well eating with the other children." What does this mean? This broke my heart for her. She looked so lonely. My thought was... Does she really not do well with them or is she just a little different or more squirky than they are? These things I am interested in knowing. I do not want EK to be a burden to her teachers and be distracting to her peers. I know she is different, butI wanted her to be involved with normal peers for a few hours each week to hopefully see how other 3 years are suppose to act. If she is being held out of the fun activities to play alone in a nursery how will she ever learn and hopefully mimic normal three year old behaviors?
Sometimes I ask "Why EK?" She is so beautiful, smart, and sweet. Why does my 3 year old have to have this disability where she rarely speaks and appears "strange" to outsiders? My prayer is for her to eventually be able to fit in and be understood by people other than Paul and me. Please continue to lift her in your prayers and us too! Sometimes I feel so beat down and like a failure. I often wonder what did I do to cause this? I know I didn't make her autistic, but sometimes I wish I knew what caused this horrible thing to happen to my precious little girl.
LC
We have really liked her new MDO (after care) but have recently been told that EK doesn't get to participate in many of the "extra" activities because she gets over stimulated. This maybe true, but I would like to know that she gets to have music time, gymnastics, dance, sports, Spanish, and chapel like her typical peers, especially since I am paying $350+ a month. I am going to have a meeting with her teachers on Tuesday to hopefully see just what she is included in and find out what her behavior is like at MDO.
On Thursday I picked EK up from MDO at 4:30 and she her other late care friends were having a snack. Four of the other children were eating together at one table and EK was at another table eating her snack alone. The late care teacher said "Eva Kate eats her snack by herself because she doesn't do well eating with the other children." What does this mean? This broke my heart for her. She looked so lonely. My thought was... Does she really not do well with them or is she just a little different or more squirky than they are? These things I am interested in knowing. I do not want EK to be a burden to her teachers and be distracting to her peers. I know she is different, butI wanted her to be involved with normal peers for a few hours each week to hopefully see how other 3 years are suppose to act. If she is being held out of the fun activities to play alone in a nursery how will she ever learn and hopefully mimic normal three year old behaviors?
Sometimes I ask "Why EK?" She is so beautiful, smart, and sweet. Why does my 3 year old have to have this disability where she rarely speaks and appears "strange" to outsiders? My prayer is for her to eventually be able to fit in and be understood by people other than Paul and me. Please continue to lift her in your prayers and us too! Sometimes I feel so beat down and like a failure. I often wonder what did I do to cause this? I know I didn't make her autistic, but sometimes I wish I knew what caused this horrible thing to happen to my precious little girl.
LC
Saturday, September 29, 2012
Liking the new bed!
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EK also had a great visit last night and thismorning with her KK at the lake house. She loves her KK to pieces. Last night when we arrived at the lake she ran to the back door and knocked and said "Halo KK" with this little southern twang. We are starting to see EK put together 2-3 word phrases more and more. She also is having more appropriate pretend play each day. Today she and her daddy were playing with Mrs. Potato Head and then Eva Kate started putting the facial parts on her own face and Paul's face. I captured this funny moment with a photo.
LC
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Monday, September 24, 2012
EK has a freak out moment!
Well... The time has come to take Eva Kate out of her toddler bed and convert her bed to a full size bed. We have been talking about doing this for a few weeks now. Today I ordered new "big girl" bedding and we went to my mom's and picked up the full size mattress and box springs.
It was late when we finally got the mattress unloaded and Paul got the toddler bed converted into the full size regular bed... about 10:15 p.m. EK seemed exhausted so I thought putting her to bed would be no problem at all. As soon as she saw me move the crib mattress out and bring the sheets in for the big bed she had a complete FIT! Screaming and inconsolable crying for 20 minutes or more. I tried reading her a story, laying down with her, getting her to jump on the bed and sing 5 Little Monkeys, listening to her nighttime music, etc. She wanted no part of any of it. Finally I brought her in the den and held her for 10 minutes and she calmed down.
Paul was finally able to get her to go back to her room, but it looks like he will sleeping with her tonight in her big girl bed. I guess this situation is better than having to convert the full size bed back into the toddler bed at 10:30 p.m. Paul- You are an amazing daddy and husband. Thanks for hauling all this home tonight, assembling it, and then sleeping with her tonight to make her feel better.
Tonight was the first time I've ever seen EK "lose it" over something so trivial. I had to take a step back and try to see how this change could be devastating an autistic child. What was she thinking? Why was this new bed so frightening? I feel like such a horrible parent for making her so upset and rocking her little world at 10 p.m. I'm hoping that tonight she sleeps well and realizes how much she likes her new bed and all the room she has to roll around on.
LC
It was late when we finally got the mattress unloaded and Paul got the toddler bed converted into the full size regular bed... about 10:15 p.m. EK seemed exhausted so I thought putting her to bed would be no problem at all. As soon as she saw me move the crib mattress out and bring the sheets in for the big bed she had a complete FIT! Screaming and inconsolable crying for 20 minutes or more. I tried reading her a story, laying down with her, getting her to jump on the bed and sing 5 Little Monkeys, listening to her nighttime music, etc. She wanted no part of any of it. Finally I brought her in the den and held her for 10 minutes and she calmed down.
Paul was finally able to get her to go back to her room, but it looks like he will sleeping with her tonight in her big girl bed. I guess this situation is better than having to convert the full size bed back into the toddler bed at 10:30 p.m. Paul- You are an amazing daddy and husband. Thanks for hauling all this home tonight, assembling it, and then sleeping with her tonight to make her feel better.
Tonight was the first time I've ever seen EK "lose it" over something so trivial. I had to take a step back and try to see how this change could be devastating an autistic child. What was she thinking? Why was this new bed so frightening? I feel like such a horrible parent for making her so upset and rocking her little world at 10 p.m. I'm hoping that tonight she sleeps well and realizes how much she likes her new bed and all the room she has to roll around on.
LC
Saturday, September 22, 2012
Seeing some slight improvements!
Eva has now been going to school at Trace Crossings for 3 weeks and we're seeing some slight improvements. We have to be careful though - I often find myself wanting so desperately to see improvements that I force them to exist, so I have to find a way to keep my observations grounded!
Eva has been showing more signs of affection lately. She frequently hugs our legs and has been wanting more attention during play time, where before she was perfectly content playing by herself. Today I sold an exersaucer to a complete stranger through Craigslist, and when they came to get it Eva ran up to them and wanted the mother to play with her!
Eva also has been acknowledging Mollie MUCH more. Eva has a princess tent in her room with a curtain door that Mollie loves to play with. Last week Eva was inside it and Mollie was just outside the door, and Eva kept poking her head through the curtain door saying, "Boo!" and Mollie thought it was hilarious!
Yesterday Lisa was working a consignment sale at church, and the girls stayed in the nursery in separate rooms. When Lisa went to pick up the girls she got Eva first and told Eva, "We need to go get Mollie now." When Eva heard that she repeatedly said, "Mollie! Mollie!" until they went to the room where Mollie was being watched. As soon as Eva saw Mollie she ran to her and gave her a huge hug! It was the first time Eva has been outwardly affectionate towards Mollie!
Finally, the thing that excited me most was when Eva engaged in pretend play for the first time...at least it was the first time I've noticed it. There was an empty box sitting on the den floor and Eva kept getting in it, as she has always done in the past. This time, however, she got in the box and said, "Car! Beep beep!" I was amazed that she was actually pretending the box was a car! In the past everything was always black and white. The box couldn't possibly be a car. It's a box, right? Hopefully we'll continue to see her playing pretend!
Eva has been showing more signs of affection lately. She frequently hugs our legs and has been wanting more attention during play time, where before she was perfectly content playing by herself. Today I sold an exersaucer to a complete stranger through Craigslist, and when they came to get it Eva ran up to them and wanted the mother to play with her!
Eva also has been acknowledging Mollie MUCH more. Eva has a princess tent in her room with a curtain door that Mollie loves to play with. Last week Eva was inside it and Mollie was just outside the door, and Eva kept poking her head through the curtain door saying, "Boo!" and Mollie thought it was hilarious!
Yesterday Lisa was working a consignment sale at church, and the girls stayed in the nursery in separate rooms. When Lisa went to pick up the girls she got Eva first and told Eva, "We need to go get Mollie now." When Eva heard that she repeatedly said, "Mollie! Mollie!" until they went to the room where Mollie was being watched. As soon as Eva saw Mollie she ran to her and gave her a huge hug! It was the first time Eva has been outwardly affectionate towards Mollie!
Finally, the thing that excited me most was when Eva engaged in pretend play for the first time...at least it was the first time I've noticed it. There was an empty box sitting on the den floor and Eva kept getting in it, as she has always done in the past. This time, however, she got in the box and said, "Car! Beep beep!" I was amazed that she was actually pretending the box was a car! In the past everything was always black and white. The box couldn't possibly be a car. It's a box, right? Hopefully we'll continue to see her playing pretend!
Tuesday, September 4, 2012
Tuesday, August 28, 2012
EK's last day of Early Intervention
Today was Eva Kate's last day of Early Intervention. We will miss her sweet sweet therapist Sally so much. We are however so very thrilled that EK will start at Trace Crossings (TC) Preschool next week. Here she will get therapy and regular structured playtime with peers 3 hours a day M-F. We have been on a mad hunt for a MDO program that is located in Hoover City limits that could be her extended care after she leaves Trace Crossings on the days I work. We finally found one that would work at 4 pm today and we are thrilled at the blessings God has showered us with today. The school EK will attend each day after she leaves TC is Discover UMC's preschool program. It is packed with lots of fun activities that other MDO provided and extra things like gymnastics, sports, Spanish, music arts, and crafts. The best part is it's right across the street from TC. I just wasn't thrilled about putting my 3 year old on a bus to travel across Hoover to go to extended care.
Yesterday at 3 pm we recieved a call from TC saying EK's after care wasn't in the Hoover City Limits and we would have to take and pick her up each day from school. After many tears, looking at all options, and much stress yesterday, last night, and this morning I will be able to continue working on the Birth Suites 4 days a month along with working for the Wellness Dept. teaching classes and doing health fairs. I guess through all the immediate stress over the last 24 hours I realized work is important but being a mommy comes 1st. Hopefully all of EK's programs will work well together, especially with the city providing EK with a special Ed bus to take to Discovery each day after she completes her day at Trace Crossings. So many new changes to come, but we are so glad EK will finally get the extra help she needs everyday. Thanks again Early Intervention for helping us make a smooth transition into the public school setting.
Yesterday at 3 pm we recieved a call from TC saying EK's after care wasn't in the Hoover City Limits and we would have to take and pick her up each day from school. After many tears, looking at all options, and much stress yesterday, last night, and this morning I will be able to continue working on the Birth Suites 4 days a month along with working for the Wellness Dept. teaching classes and doing health fairs. I guess through all the immediate stress over the last 24 hours I realized work is important but being a mommy comes 1st. Hopefully all of EK's programs will work well together, especially with the city providing EK with a special Ed bus to take to Discovery each day after she completes her day at Trace Crossings. So many new changes to come, but we are so glad EK will finally get the extra help she needs everyday. Thanks again Early Intervention for helping us make a smooth transition into the public school setting.
Thursday, August 23, 2012
Private Speech Therapy
EK had her 1st speech therapy session today at Child's Play in Hoover. We went two weeks ago to meet her therapist and fill out paper work. Today's session was our 1st real session. Her therapist, LuLu, did several activities that EK really enjoyed. First they played with Dot Paint and EK was obsessed with the color purple and said it over and over. She made great eye contact with LuLu and even took turns with her as they made a picture. Next they played with bubbles and of course EK loved this. She really enjoys poking the bubbles and saying "Pop, Pop, Pop". They ended their 30 minute session with a jack in the box. EK requested it from the toy shelf by using the word "Box". She even said the word "clown" several times which I have never heard her say. Eva Kate had several melt downs between activities, but luckily they were short lived. So hard to see her have these melt downs on the other side of a two way mirror/window. On a positive note- The therapist said that she met many of the goals that she had set from our 1st meeting and was very impressed with EK's jargon. LuLu said that her jargon had great tone and her voice went up and down when she jabbered showing some good language patterns. I just hope to hear more and more new words come from Eva Kate's mouth that I can understand. Below is a photo I took through the two way mirror during EK's session.
Today at Child's Play I also purchased a chew stick for Eva Kate. I felt like I was purchasing a dog toy. I have gone back and forth on whether or not these are a good thing. I decided it was more of a safety measure for EK. In the evenings when I am cooking dinner and EK is having TV time we have caught her on several occasions chewing on the laptop computer's charger cable. We find that her chewing is the worst while watching tv. We try to limit TV to times when we can't physically be in the room watching her every move- because tv is something she is very attentive to. After noticing that her chewing habits are decreasing in frequency and noticing they are usually only seen during tv time, made me decide to get her this tool to get her oral "fix" in for the day. My biggest fear has been that we would be encouraging a bad habit by giving her this chew stick. It's only the first day with the chew stick, but hopefully this will be a safe chew device for her to increase the oral sensation she is seeking and also cut down on amount of time she spending chewing each day.
EK did qualify for Trace Crossings Elementary Special Ed Preschool program. We go next Thursday to her eligibility meeting and to write her IEP. A HUGE thanks to Laura Jones for helping get me several good resources as we transition from the early intervention program in our community to the school system. Laura is a special ed teacher who has also worked with Early Intervention. She has been such a wonderful resource for us during this time of million questions.
Tuesday, August 14, 2012
The Big Birthday Bash
Paul reminded me today that neither of us have posted lately on EK's blog. A lot has happened in the past few weeks. We decided to take EK off the casein free diet a little over a week ago. We just were not seeing the results that we had read about. We of course offered her regular 2% "bilk" as she calls it, and she would have NOTHING to do with it. So we must have traumatized the poor child. She now only drinks juice and water. She did enjoy having a few Kraft Singles and yogurt though. :)
We had a joint 1st birthday party for Mollie and 3rd birthday party for Eva Kate this past Saturday. It was a Minnie Mouse themed party and was a lot of fun. Thanks to all the family and friends who came and made this day so special. We had the party in Gardendale at my mom's house and had a cool jumpy house and baby pools set out for the kids to enjoy. We could not have asked for better weather. It was low 80's and great for everyone to sit out in the yard and socialize while the kiddos ran around. The decorations came together really well from some ideas I found on pinterest and Paul's mom (KK) did an outstanding job on the girl's birthday cakes and cupcakes.
EK seemed to really enjoy her birthday party and actually interacted with her cousins and friends. We are seeing baby steps of progress with better peer interaction and eye contact when we address her. Her teacher at MDO said she could really see improvement in her social play compared to what it was in early summer. She is also becoming so much more affectionate towards Paul and me. She loves giving hugs, sometimes kisses, and holding hands. She also seems to be warming up to Mollie slowly. Mollie is still enamored by her big sister. I think Mollie's obsession with Eva Kate and willingness to keep engaging in Eva Kate's activities will actually be so important in Eva Kate's road to improvement.
Today we met with EK's precious speech therapist at Hand in Hand for one of her final visits with Early Intervention. She had a good session with lots of play and a few melt downs here and there when we transitioned from one activity to another. Overall her therapist said she feels like the tantrum/ meltdowns are becoming less intense and lasting a shorter amount of time. I would have to agree. I find myself ignoring her 1st tantrum when we transition but if it happens a second time or last more than a few minutes she then goes to time out. Usually this discipline nips the negative tantrum in the bud.
I'm still praying that Eva's language will become more clear. She jabbers so expressively and it's so frustrating for us and for her when we can't make out what she needs or wants.
That's all for now...
LC
We had a joint 1st birthday party for Mollie and 3rd birthday party for Eva Kate this past Saturday. It was a Minnie Mouse themed party and was a lot of fun. Thanks to all the family and friends who came and made this day so special. We had the party in Gardendale at my mom's house and had a cool jumpy house and baby pools set out for the kids to enjoy. We could not have asked for better weather. It was low 80's and great for everyone to sit out in the yard and socialize while the kiddos ran around. The decorations came together really well from some ideas I found on pinterest and Paul's mom (KK) did an outstanding job on the girl's birthday cakes and cupcakes.
EK seemed to really enjoy her birthday party and actually interacted with her cousins and friends. We are seeing baby steps of progress with better peer interaction and eye contact when we address her. Her teacher at MDO said she could really see improvement in her social play compared to what it was in early summer. She is also becoming so much more affectionate towards Paul and me. She loves giving hugs, sometimes kisses, and holding hands. She also seems to be warming up to Mollie slowly. Mollie is still enamored by her big sister. I think Mollie's obsession with Eva Kate and willingness to keep engaging in Eva Kate's activities will actually be so important in Eva Kate's road to improvement.
Today we met with EK's precious speech therapist at Hand in Hand for one of her final visits with Early Intervention. She had a good session with lots of play and a few melt downs here and there when we transitioned from one activity to another. Overall her therapist said she feels like the tantrum/ meltdowns are becoming less intense and lasting a shorter amount of time. I would have to agree. I find myself ignoring her 1st tantrum when we transition but if it happens a second time or last more than a few minutes she then goes to time out. Usually this discipline nips the negative tantrum in the bud.
I'm still praying that Eva's language will become more clear. She jabbers so expressively and it's so frustrating for us and for her when we can't make out what she needs or wants.
That's all for now...
LC
Saturday, July 21, 2012
Out pouring of love :)
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
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
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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