I've been reading this blog regularly. Am I wrong for being OK with who my kids are? I want them to be happy, feel better, do better and become something, but I'm not willing to sacrifice what makes them who they are, and if that is autism, so be it. Eric is the sweetest, cutest, melt-your-heart and make-you-want-to-cry-from-amazement most astounding person I have ever been privileged to meet, let alone be a parent to. And if autism makes Evan the feisty, numbers-oriented, always-on-the-go, keep-me-guessing, fun-seeking boy that he is, so be it. I don't want them to suffer or feel sick, but I believe that where we are, what we are going through is for a reason. Every decision, every choice I have made in my life has put me here for some reason greater than my own selfish fulfillment.
Do you ever experience déjà vu? I do...a lot. They say that that is the universe telling you that you are right where you are supposed to be. Is that bullshit? I don't know. Is it like telling a bride that rain on her wedding day is good luck so that she isn't so overwhelmed by bad weather that she misses one of the most amazing and memorable days in her life? To me, good, bad or indifferent, every moment, every instance, even every roadblock is a memory, a story in the making.
Maybe I'm looking for a reason not to fight harder or push more, but I think I need to find a balance between helping my children become whatever it is that they will be, and living a life that we can all be happy with.
http://www.chicagonow.com/blogs/fighting-autism-and-winning/
Thursday, July 1, 2010
Sunday, May 23, 2010
New Stuff
I never post anything on here other than my family's news. Time to start passing along some of the items that I read/really like...
http://www.chicagonow.com/blogs/fighting-autism-and-winning/2010/05/top-ten-stupid-comments-parents-of-typical-children-say-to-parents-of-special-needs-children.html
In light of another attempted mingling with parents of all 'typical' children, I felt compelled to highlight some of the comments that continue to make me laugh and cringe at the same time. I understand you may feel uncomfortable or not know exactly what to say, and although you surely have the best intentions, here are a few phrases to steer clear of:
10. It's so great that you do so much for him, I just couldn't do it.
You are probably right, you couldn't do it...you weren't chosen like we were.
9. You have to meet my nephew who is severely autistic.
Like I am now the autism whisperer and must meet every child, parent, and person with autism in this world because I am in the same situation.
8. Have you tried (insert therapy, supplement, doctor here)?
Treatment and "cure" ideas from moms who aren't affected by autism is very vexing to me personally. I don't mind at all if people ask questions about any of those theories, but it's just going to tick me off if you tell me that my son would be magically cured if only I would do whatever your hairdresser's cousin did with her child.
And I would be rolling in money right now if I had a nickel for every freakin' time someone asked me if I knew that Jenny McCarthy's son had autism too and that she wrote a book, which would most likely fix all of my problems. To this comment, I smile, and politely tell them that Jenny and I are actually quite good friends, and watch their eyes widen in awe. For the record, I have met Jenny once, and have one personal email from her in my inbox :)
7. Wow, he doesn't look autistic!
My other pet peeve is the word, autistic. We don't say, my canceric neighbor. Actually my child is just like your child only he has a comorbid autoimmune disease caused by injury to his immune system as a baby...his 'autistic' symptoms are just symptoms from that brain inflammation. He amazes me every day with his awe-inspiring creativity, empathy, persistence, patience, and brilliance.
This statement is another double edged sword in public because he doesn't look 'affected' by a disability, thus all of his interactions are judged as a typical child. Because those behaviors are sometimes out of the norm, judgment of him and I both ensue....usually not a pretty outcome. Warning... I will call the police if you put your hands on my child!
6. Oh your son has autism, I am so sorry!
No, I am sorry you're so stupid! I am the most blessed and proud mother on this planet with a very important God given job to do. What is your purpose in life?
5. That kid rules the house (from the NBC show Parenthood from a family member). Or You shouldn't let him hit you.
You have no idea what it's like to raise a special needs child...so go worry about your own bratty, rude, typical child...apple doesn't fall far from the tree.
4. The misconception that they aren't bright. It is usually quite opposite. Why is it cool to have a gifted child but not so cool to have a child with an autism label AND a gifted label?
This irked me about that ParentHood show where Julia thinks her child could have autism, but instead is diagnosed as being gifted (hence celebration)...yet her cousin Max who holds an Aspergers diagnosis and is clearly gifted, is portrayed as merely having autism.
I just want to scream my child is way smarter than your child and can kick your kids butt!
3. Your child can't go to school without being vaccinated.
Coming from a parent whom my child goes to school with!
2. Well I'd rather deal with autism than measles or polio...
O.K., just because your child did not have a reaction or vaccine injury doesn't mean that getting measles or polio would be more devastating or difficult than autism. Like you know what it is even like to 'deal with' autism.
1. My child can't sit next to ANY of her friends because she talks too much, so she has to sit next to (my child).
YOUR child is sitting next to my child because she is so disruptive with probable ADHD, that the teacher put her there to benefit from my child's aid...as she could clearly use her own. You obviously didn't hear the comment that she made to my son about him being so 'handsome' and that he is her best friend...God forbid HE be her best friend or she be attracted to him....Grrrrrrrrrrr.
Here is what I think of your parenting skills....
I often feel many parents think just because their child has ________ or their child is (insert personality type) they should be exempt from teaching their children respect, manners, honesty, compassion etc....it seems to me many of the "normal" children are more rude and disrespectful than any ASD child I have ever met, and I know they (the "normal" children) have meltdowns too.
http://www.chicagonow.com/blogs/fighting-autism-and-winning/2010/05/top-ten-stupid-comments-parents-of-typical-children-say-to-parents-of-special-needs-children.html
In light of another attempted mingling with parents of all 'typical' children, I felt compelled to highlight some of the comments that continue to make me laugh and cringe at the same time. I understand you may feel uncomfortable or not know exactly what to say, and although you surely have the best intentions, here are a few phrases to steer clear of:
10. It's so great that you do so much for him, I just couldn't do it.
You are probably right, you couldn't do it...you weren't chosen like we were.
9. You have to meet my nephew who is severely autistic.
Like I am now the autism whisperer and must meet every child, parent, and person with autism in this world because I am in the same situation.
8. Have you tried (insert therapy, supplement, doctor here)?
Treatment and "cure" ideas from moms who aren't affected by autism is very vexing to me personally. I don't mind at all if people ask questions about any of those theories, but it's just going to tick me off if you tell me that my son would be magically cured if only I would do whatever your hairdresser's cousin did with her child.
And I would be rolling in money right now if I had a nickel for every freakin' time someone asked me if I knew that Jenny McCarthy's son had autism too and that she wrote a book, which would most likely fix all of my problems. To this comment, I smile, and politely tell them that Jenny and I are actually quite good friends, and watch their eyes widen in awe. For the record, I have met Jenny once, and have one personal email from her in my inbox :)
7. Wow, he doesn't look autistic!
My other pet peeve is the word, autistic. We don't say, my canceric neighbor. Actually my child is just like your child only he has a comorbid autoimmune disease caused by injury to his immune system as a baby...his 'autistic' symptoms are just symptoms from that brain inflammation. He amazes me every day with his awe-inspiring creativity, empathy, persistence, patience, and brilliance.
This statement is another double edged sword in public because he doesn't look 'affected' by a disability, thus all of his interactions are judged as a typical child. Because those behaviors are sometimes out of the norm, judgment of him and I both ensue....usually not a pretty outcome. Warning... I will call the police if you put your hands on my child!
6. Oh your son has autism, I am so sorry!
No, I am sorry you're so stupid! I am the most blessed and proud mother on this planet with a very important God given job to do. What is your purpose in life?
5. That kid rules the house (from the NBC show Parenthood from a family member). Or You shouldn't let him hit you.
You have no idea what it's like to raise a special needs child...so go worry about your own bratty, rude, typical child...apple doesn't fall far from the tree.
4. The misconception that they aren't bright. It is usually quite opposite. Why is it cool to have a gifted child but not so cool to have a child with an autism label AND a gifted label?
This irked me about that ParentHood show where Julia thinks her child could have autism, but instead is diagnosed as being gifted (hence celebration)...yet her cousin Max who holds an Aspergers diagnosis and is clearly gifted, is portrayed as merely having autism.
I just want to scream my child is way smarter than your child and can kick your kids butt!
3. Your child can't go to school without being vaccinated.
Coming from a parent whom my child goes to school with!
2. Well I'd rather deal with autism than measles or polio...
O.K., just because your child did not have a reaction or vaccine injury doesn't mean that getting measles or polio would be more devastating or difficult than autism. Like you know what it is even like to 'deal with' autism.
1. My child can't sit next to ANY of her friends because she talks too much, so she has to sit next to (my child).
YOUR child is sitting next to my child because she is so disruptive with probable ADHD, that the teacher put her there to benefit from my child's aid...as she could clearly use her own. You obviously didn't hear the comment that she made to my son about him being so 'handsome' and that he is her best friend...God forbid HE be her best friend or she be attracted to him....Grrrrrrrrrrr.
Here is what I think of your parenting skills....
I often feel many parents think just because their child has ________ or their child is (insert personality type) they should be exempt from teaching their children respect, manners, honesty, compassion etc....it seems to me many of the "normal" children are more rude and disrespectful than any ASD child I have ever met, and I know they (the "normal" children) have meltdowns too.
Monday, March 22, 2010
Almost Three Months
I have been seriously slacking on updates lately. I guess life has been busier than usual. Rather than bore you with all of the intimate details of the last 90 days, I will give you a quick rundown and post some photos.
We have been giving Eric B12 every other day now and he is tolerating it well. He is taking it orally and seems OK with it. He is talking a bit more. It just amazes me how capable he is, but just doesn't see the need to engage in conversation for the sake of conversation. As long as his wants and needs are met, there really isn't much else to talk about. I think about it like this--if it is raining out and we both see that it is raining out, he does not need to tell me it is raining out because he sees it and I see it so why talk about it. Evan, of course, is the total opposite and will talk about the fact that it is raining until it stops!
Evan started indoor soccer at the YMCA. It is a bunch of 3-5 year olds running around, chasing a ball. He LOVES it. My little sports fanatic. He is getting the hang of it--no hands, kicking, blocking and stopping. But when it comes time for a game, he follows the herd!
Eric is doing his autism social playgroup that we joined last year. It is 10 weeks of different activities, including swimming, horseback riding, etc. One of the activities this year was BounceU. It's a big, indoor bounce house gym. We were there a year ago for Rob's nephews' birthday party; however, Eric did not do well. In a year's time, he clearly changed his mind because he absolutely loved it and was totally engaged the entire two hours we were there.
We have been taking both boys swimming regularly to get each blowing bubbles, floating on their backs, putting their faces in the water, and kicking and paddling. Both are doing really well. Evan can tread water all by himself with a floatie on! Eric is a bit scared. He isn't too fond of it when he can't touch anymore. When I try to pry him off of me (literally pry him off of me) to get him to tread water, he giggles and grabs hold for dear life!
We have been going out to eat, running errands a lot lately...typical family stuff, and the boys are doing so well. For so long we were trapped inside because one or both could not or would not behave. They are doing so much better and both really enjoy going to the store (whatever store, they don't care) and going to restaurants.
We had Evan's birthday party yesterday at a bowling alley/family fun center. The day literally could not have been more perfect had I planned it in my mind. All the kids were well-behaved. Evan had a blast. Eric tried pizza for the first time! Then, we spent the day outside. By last night, the four of us were beyond exhausted, but what an amazing day.
Both boys are doing camp(s) this summer. Our school district has approved Eric for Extended School Year and I think we finally found a camp that meets their requirements, still allows our awesome TSS to attend with him and gives him three weeks off throughout the summer to just hang with Evan and I and do regular, fun, family summer things! Evan will be attending Bible camp and pre-K camp at the church where he currently attends preschool. In addition, he will be doing a four-day camp with one of his friends at his preschool. I also plan on getting Evan into swimming lessons at the YMCA. The boys are not good if they aren't busy. They get that terrible trait from me!
While there were other unimportant and not-as-fun details riddled throughout the last three months, all-in-all, life has been great. Overall, the boys are doing amazing. We are all looking forward to the warmer weather and more time spent outside.
I am heading to Hershey next weekend for a much-needed girl's night on Saturday and the following weekend we are taking the boys to the Great Wolf Lodge in Cleveland--it's an indoor water park. I will post more after our adventures.
Until then, here are some recent photos!
We have been giving Eric B12 every other day now and he is tolerating it well. He is taking it orally and seems OK with it. He is talking a bit more. It just amazes me how capable he is, but just doesn't see the need to engage in conversation for the sake of conversation. As long as his wants and needs are met, there really isn't much else to talk about. I think about it like this--if it is raining out and we both see that it is raining out, he does not need to tell me it is raining out because he sees it and I see it so why talk about it. Evan, of course, is the total opposite and will talk about the fact that it is raining until it stops!
Evan started indoor soccer at the YMCA. It is a bunch of 3-5 year olds running around, chasing a ball. He LOVES it. My little sports fanatic. He is getting the hang of it--no hands, kicking, blocking and stopping. But when it comes time for a game, he follows the herd!
Eric is doing his autism social playgroup that we joined last year. It is 10 weeks of different activities, including swimming, horseback riding, etc. One of the activities this year was BounceU. It's a big, indoor bounce house gym. We were there a year ago for Rob's nephews' birthday party; however, Eric did not do well. In a year's time, he clearly changed his mind because he absolutely loved it and was totally engaged the entire two hours we were there.
We have been taking both boys swimming regularly to get each blowing bubbles, floating on their backs, putting their faces in the water, and kicking and paddling. Both are doing really well. Evan can tread water all by himself with a floatie on! Eric is a bit scared. He isn't too fond of it when he can't touch anymore. When I try to pry him off of me (literally pry him off of me) to get him to tread water, he giggles and grabs hold for dear life!
We have been going out to eat, running errands a lot lately...typical family stuff, and the boys are doing so well. For so long we were trapped inside because one or both could not or would not behave. They are doing so much better and both really enjoy going to the store (whatever store, they don't care) and going to restaurants.
We had Evan's birthday party yesterday at a bowling alley/family fun center. The day literally could not have been more perfect had I planned it in my mind. All the kids were well-behaved. Evan had a blast. Eric tried pizza for the first time! Then, we spent the day outside. By last night, the four of us were beyond exhausted, but what an amazing day.
Both boys are doing camp(s) this summer. Our school district has approved Eric for Extended School Year and I think we finally found a camp that meets their requirements, still allows our awesome TSS to attend with him and gives him three weeks off throughout the summer to just hang with Evan and I and do regular, fun, family summer things! Evan will be attending Bible camp and pre-K camp at the church where he currently attends preschool. In addition, he will be doing a four-day camp with one of his friends at his preschool. I also plan on getting Evan into swimming lessons at the YMCA. The boys are not good if they aren't busy. They get that terrible trait from me!
While there were other unimportant and not-as-fun details riddled throughout the last three months, all-in-all, life has been great. Overall, the boys are doing amazing. We are all looking forward to the warmer weather and more time spent outside.
I am heading to Hershey next weekend for a much-needed girl's night on Saturday and the following weekend we are taking the boys to the Great Wolf Lodge in Cleveland--it's an indoor water park. I will post more after our adventures.
Until then, here are some recent photos!
The boys and I reading one of Evan's favs!
Evan playing video games at his birthday party. (I'm sure I could have turned this, but I'm tired. Turn your head to the left and you will get the full effect.)
Singing to Evan at his birthday party.
Eric bowling at Evan's birthday party.
Pele Bilger at soccer.
Saturday, January 2, 2010
2010
I cannot believe the holidays are over. Though quite uneventful and quiet this year, they still managed to zoom past. Last year we had calamity after catastrophe, but this year was different. Slower. I said anticlimactic, but in hindsight, it was quite enjoyable.
I didn't get to see as many or as much of my family and friends as I would have liked, but hopefully more in the New Year. We did dinner with Rob's family both Christmas Eve and Christmas Day. My Dad and Lauren came up last weekend to see the boys and do Christmas with them. New Years was just our foursome. Rob and I made a good dinner. The boys got to do some sparklers outside in their jammies and bang pots and pans at midnight (8 p.m.--it was midnight somewhere!).
The boys start back to their regular routine on Monday (sigh), so we wanted to get a few extra fun things in these past few days. We went swimming, played in the snow multiple times, visited the Science Center, went out to eat a few times, drove through the Christmas lights one last time, went bowling and have had plenty of time to play with new toys.
It's funny how it might just seem typical to most that we did these things, but it's a slow process building up the courage (or understanding there might be a significant let down) prior to venturing into unchartered territory. This week, there were little blessings in each new thing we did. Both boys were very willing to participate in swimming--kicking with a kickboard, blowing bubbles, etc.--more so than ever before. The first time we went to the Science Center a few months ago, Eric just wanted to stay in the train room the entire time and Evan was kinda all over the place. We were only there about an hour or so. When we visited the other day, we not only stayed for over two hours, but both of the boys wore their wristbands (you know the kind like at amusement parks that tell the workers you paid to be there). They have never worn wristbands for any reason. They both usually hate them. Though Eric probably would have been content with just the train room, he ventured out and up to the water play area where he managed to take his fingers out of his ears so that he could have fun splashing and playing with boats and balls. And Evan, my little princess who refuses to get his shoes wet (unless it is his snow boots, in which case he doesn’t care), literally jumped right in, water smock and all, and played. It was really nice to see the two of them enjoying themselves and putting their little hang-ups aside only to realize that they could have a great time! When we went bowling, Evan, who HATES new shoes, put on his bowling shoes happily. And even though it was dark with a black light and there were videos and music playing everywhere, and light displays on the walls (like opening the sensory floodgate) Eric was fine. He held his ears most of the time, but went in the building just fine and participated with the family in bowling. I know it seems small, but great, little things keep happening like this. I hope it continues through 2010.
Here are a bunch of photos from the last few weeks in no particular order.
I didn't get to see as many or as much of my family and friends as I would have liked, but hopefully more in the New Year. We did dinner with Rob's family both Christmas Eve and Christmas Day. My Dad and Lauren came up last weekend to see the boys and do Christmas with them. New Years was just our foursome. Rob and I made a good dinner. The boys got to do some sparklers outside in their jammies and bang pots and pans at midnight (8 p.m.--it was midnight somewhere!).
The boys start back to their regular routine on Monday (sigh), so we wanted to get a few extra fun things in these past few days. We went swimming, played in the snow multiple times, visited the Science Center, went out to eat a few times, drove through the Christmas lights one last time, went bowling and have had plenty of time to play with new toys.
It's funny how it might just seem typical to most that we did these things, but it's a slow process building up the courage (or understanding there might be a significant let down) prior to venturing into unchartered territory. This week, there were little blessings in each new thing we did. Both boys were very willing to participate in swimming--kicking with a kickboard, blowing bubbles, etc.--more so than ever before. The first time we went to the Science Center a few months ago, Eric just wanted to stay in the train room the entire time and Evan was kinda all over the place. We were only there about an hour or so. When we visited the other day, we not only stayed for over two hours, but both of the boys wore their wristbands (you know the kind like at amusement parks that tell the workers you paid to be there). They have never worn wristbands for any reason. They both usually hate them. Though Eric probably would have been content with just the train room, he ventured out and up to the water play area where he managed to take his fingers out of his ears so that he could have fun splashing and playing with boats and balls. And Evan, my little princess who refuses to get his shoes wet (unless it is his snow boots, in which case he doesn’t care), literally jumped right in, water smock and all, and played. It was really nice to see the two of them enjoying themselves and putting their little hang-ups aside only to realize that they could have a great time! When we went bowling, Evan, who HATES new shoes, put on his bowling shoes happily. And even though it was dark with a black light and there were videos and music playing everywhere, and light displays on the walls (like opening the sensory floodgate) Eric was fine. He held his ears most of the time, but went in the building just fine and participated with the family in bowling. I know it seems small, but great, little things keep happening like this. I hope it continues through 2010.
"The great lesson...is that the sacred is in the ordinary, that it is to be found in one's daily life, in one's neighbors, friends, and family, in one's back yard." ~ Abraham Maslow
Playing in the snow. Look at my ridiculous dog!
Eric enjoying a glass of fine, Mott's apple juice.
Mom Mom and Pop Pop watching the boys open their presents.
Evan getting a Wii game--I don't think he has stopped playing it for any 
Eric opening presents. He puts his whole body into it!
Santa arrived.
Santa broke down in front of our house and had to call another truck to come and give him a jump.
Evan helping (or more likely hindering) Rob shoveling.
Evan at his Christmas program.Happy New Year! (I don't know what's funnier, the kids outside in their jammies with snow on the ground or Rob tilting the camera at the end just as I'm about to yell at the dog for trying to eat the sparklers!)
I hope everyone has an amazing 2010--health, happiness and time for the things that truly matter--family and friends.
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