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Old 11-27-2009, 03:35 AM   #1961
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WELCOME Andrea!
We were told the same thing by DS2's pediatrition when DS2 was 18 mths. Boys are slower, give it some time blah blah blah.
When DS2 was still an infant I told the DR several times that he barely ever cried and would tighten up when he was held. I could feed him with no problem if he was in his infant seat! I was dimissed everytime I brought it up. DR told us that some babies are very quiet and that its a good thing. Yeah.
I didn't listen either and got him into a specialist. Sadly there are DR's that don't realize that we know our children and as parents we just know when something isn't right.
We started DS2 in the Birth to 3 program when he turned 18 months.

Blessings to you for getting your child to a specialist and the help he needs.
You are on the right track.
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Old 11-27-2009, 06:36 AM   #1962
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Susan - I will look for a link.

Andrea - welcome to this thread! We understand what you are going through and I commend you for making sure your son was seen by someone other than just his pediatrician. We moms get that intuition thing going and good for you in following it.

My DS turned 6 in September and is on the spectrum. He currently attends special ed first grade and also goes to a mainstream before/after school daycare center.

We're here for you and thank you for sharing your story.

Lorraine in San Diego
Thank you, Lorraine - very much. I will admit, though, that I was holding out hope that it was something other than autism - something that we could "fix", if you know what I mean.

I hope you had a fabulous Thanksgiving!
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Old 11-27-2009, 06:38 AM   #1963
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Welcome Andrea!!!!
So glad to find another "mom of 4" on the thread.
Hi Kristin - Yep, another mom of 4. I have twin soon-to-be 7-year old girls, a 4-year old girl, and Grant is our youngest . . . and last Ha ha ha!

I so know what life is like for you - we'll share stories

Andrea
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Old 11-27-2009, 06:42 AM   #1964
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WELCOME Andrea!
We were told the same thing by DS2's pediatrition when DS2 was 18 mths. Boys are slower, give it some time blah blah blah.
When DS2 was still an infant I told the DR several times that he barely ever cried and would tighten up when he was held. I could feed him with no problem if he was in his infant seat! I was dimissed everytime I brought it up. DR told us that some babies are very quiet and that its a good thing. Yeah.
I didn't listen either and got him into a specialist. Sadly there are DR's that don't realize that we know our children and as parents we just know when something isn't right.
We started DS2 in the Birth to 3 program when he turned 18 months.

Blessings to you for getting your child to a specialist and the help he needs.
You are on the right track.
Thank you so much for your encouraging words. Luckily, I feel like we didn't lose too much time waiting - maybe about 6-8 months. Our specialist agreed, saying it's so much harder when parents don't bring their children in until they are 4 or 5 years old.

A mom's intuition is an amazing thing . . . I'm glad you and I both had the fortitude to follow it.

I hope you had a great Thanksgiving!
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Old 11-28-2009, 04:41 AM   #1965
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Thank you so much for your encouraging words. Luckily, I feel like we didn't lose too much time waiting - maybe about 6-8 months. Our specialist agreed, saying it's so much harder when parents don't bring their children in until they are 4 or 5 years old.

A mom's intuition is an amazing thing . . . I'm glad you and I both had the fortitude to follow it.

I hope you had a great Thanksgiving!
Hi Andrea. The 6-8 months will made up. I was told by many specialist that we do need to start them in therapy young for the best results. You are in that age group for the best results according to what I have been told.
You are doing the right thing.
Sadly there are parents that wait to long. When I had DS2 at the Early Autism Project when he was 3 for testing the Dr and I were talking about this very subject. He told me that they accept children up to age 5 as after that there learning abilities drastically decrease. He told me that a family brought in there 9 year child for ABA therapy to get started but it would not have worked. He said the results for improvement are so minor. He said he felt horrible for turning them away for services but then the parents did nothing for 9 years to help this child. I always remembered this as I feel sad for this child.
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Old 11-29-2009, 09:13 PM   #1966
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Feeling sad tonight.
This past week has been good. Really good. Like, "wow, my mean family is right, he's not autistic at all" good. And then today, whammo. Full out meltdown central.
The sadness isn't from that so much as from seeing all of the K-7 Sunday School kids in the choir, and watching the little adorable Kindergarten kids walk out to take center stage, and realizing that my little Kindergarten kid wasn't up there. I felt... sick. My throat got tight, I couldn't swallow. I had to force myself to look and smile at my other two kids on the stage. My heart broke a little. It was one of those "he's not in a wheelchair...and I have so much to be thankful for...but I still feel robbed" moments.
I managed to shake it off all day, but now in the quiet of kids-in-bed, I am sad.
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Old 11-30-2009, 03:07 AM   #1967
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Kristin,

Welcome to the new normal that is autism parenting: an emotional rollercoaster that has no one at the controls. Your response is 100% normal and don't let anyone tell you differently. You have every right to mourn the son who will not be in whatever way works for you.

What I can promise is that you are strong enough to deal with it, you will find strength in unexpected ways if you look for it, and things WILL get better. Neither your son nor you are now who you will be in one year, five years, 15 years.

Now is important, though. Pay attention to your emotions, as you are doing by typing your feelings here. Respect how you feel now, but reach for peace. Make time for yourself in the craziness, even if it means you have to take an hour after everyone is in bed. You need to take care of yourself if you're going to stay in top form to care for all your kids.

Hugs, Kristin. You really are not alone.
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Old 11-30-2009, 07:46 AM   #1968
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Hi Kristin -

I'm with you right now. The sadness I feel is constant and overwhelming, yet I constantly have to put it aside as I (and you) have 3 other children and a family to be strong for. My family feels so divided - we cannot take Grant anywhere right now - and it feels like one of us does stuff with the girls and one of us watches Grant at home. His sensory system is on constant overload and his frustration is reaching unknown heights. Unfamiliar surroundings cause him so much stress and he becomes simply unmanageable. I'm sure this will change as he matures, but right now it's awful and totally deflating. I'll share some examples later.

I'm not sure this post helps you in anyway, if not anything but to let you know that you are not alone and there are those of us out there who truly, really, honestly, and unwaveringly understand and are there too.

Take Care.
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Old 11-30-2009, 07:50 AM   #1969
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Hi Andrea. The 6-8 months will made up. I was told by many specialist that we do need to start them in therapy young for the best results. You are in that age group for the best results according to what I have been told.
You are doing the right thing.
Sadly there are parents that wait to long. When I had DS2 at the Early Autism Project when he was 3 for testing the Dr and I were talking about this very subject. He told me that they accept children up to age 5 as after that there learning abilities drastically decrease. He told me that a family brought in there 9 year child for ABA therapy to get started but it would not have worked. He said the results for improvement are so minor. He said he felt horrible for turning them away for services but then the parents did nothing for 9 years to help this child. I always remembered this as I feel sad for this child.
Thank you for your encouragement - it sure does help. The story from your doctor is truly saddening. I don't think I'll forget it. Take Care.
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Old 11-30-2009, 10:23 AM   #1970
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Kristin - I think all of us can relate to what you posted. I too have gotten that sad feeling in having to face the fact that DS is not NT. I also get teary when surrounded by NT's at events where DS would not be comfortable.

Grandma asked about DS's Christmas pageant this year and I told her to forget it. We've tried twice now and each year, it's just too much. Too many swirling adults, loud voices and high energy in one spot for DS.

Wishing everyone a peaceful week......

Lorraine
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Old 11-30-2009, 10:39 AM   #1971
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Hi,
I just found this thread. I'll have to take some time to read through it, but for right now, I want to subscribe. My son is 14 yo and has autism. He goes to a small Catholic school and functions pretty well there. We have issues still with change (it never ends!) and with his one-on-one relations with peers. I hope I can find some good ideas for helping him with the friends department.

I look forward to getting to know the rest of you!
CindyB
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Old 11-30-2009, 08:47 PM   #1972
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Hi Ladies, thank you for your kindness and your support. Having you here, knowing I can connect with someone who truly understands, is such a blessing. Am struggling to find childcare for our son and "weekend away" plans are unravelling. Ah yes, this is the 'work' of autism that isn't just regular parent stuff, in my opinion. It will all work out in the end, always does.

Tell me, how do you handle the holidays and holidays schedule with/for your child? Last year was a bit tricky, this year with all the therapy we've done, B is more aware of his surroundings... I think this is going to be a mxed blessing this year!

Seriously, you guys are my "phone a friend" and "life line" all in one as I've not yet managed to hook into a support group... well, and who has time for one more scheduled event on the calendar really. lol
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Old 12-01-2009, 03:26 AM   #1973
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Hi Ladies, thank you for your kindness and your support. Having you here, knowing I can connect with someone who truly understands, is such a blessing. Am struggling to find childcare for our son and "weekend away" plans are unravelling. Ah yes, this is the 'work' of autism that isn't just regular parent stuff, in my opinion. It will all work out in the end, always does.

Tell me, how do you handle the holidays and holidays schedule with/for your child? Last year was a bit tricky, this year with all the therapy we've done, B is more aware of his surroundings... I think this is going to be a mxed blessing this year!

Seriously, you guys are my "phone a friend" and "life line" all in one as I've not yet managed to hook into a support group... well, and who has time for one more scheduled event on the calendar really. lol
WHat we did and still do for DS2 is we talk about the Holiday visiting schedule repeatedly so he he is aware and knows what is going on and he adjusts to it easier. I am sure will still come home a bit early as it does get to be to much for him at my uncles house with the entire family there. But talking all month about what we will be doing really helps with the change for us.
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Old 12-01-2009, 03:35 AM   #1974
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Hi,
I just found this thread. I'll have to take some time to read through it, but for right now, I want to subscribe. My son is 14 yo and has autism. He goes to a small Catholic school and functions pretty well there. We have issues still with change (it never ends!) and with his one-on-one relations with peers. I hope I can find some good ideas for helping him with the friends department.

I look forward to getting to know the rest of you!
CindyB
My DS2 is 13 and we also have the one-on-one relations with peers issues.
He is getitng better but has a long way to go.
I realized that raising a high-functioning autistic teenager has its own set of issues.
He is always looking for acceptence in his peers and he is a follower. He has gotten into trouble with us 3 times now as he cannot do the right thing in a split second decision.
I give him little scenarios everyday about drugs, alcohol, fighting, cheating and so on and he always answers me correctly but then this last time he did the wrong thing and got in a fight.
Any advice on how to correct a teen behavior like this is always welcome.

DS2 has his school friends but they are not best friends or anything like that.
At home he hangs around DS1 and his friends. We keep urging him to call someone from school or invite them over but he won't. I hope in time he does find a friend that is his friend and his brothers friend.
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Old 12-01-2009, 03:40 AM   #1975
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Kristin - I think all of us can relate to what you posted. I too have gotten that sad feeling in having to face the fact that DS is not NT. I also get teary when surrounded by NT's at events where DS would not be comfortable.

Grandma asked about DS's Christmas pageant this year and I told her to forget it. We've tried twice now and each year, it's just too much. Too many swirling adults, loud voices and high energy in one spot for DS.

Wishing everyone a peaceful week......

Lorraine
DS2 was the same way when he younger. He would run off the stage or sit down so no one could see him up on the stage. We kept urging him to do it and finally in fifth grade he surprised us and actually stayed standing and sang!!!
He kept his eyes closed so "no one could see him" but he did it.
He actually felt so proud of himself also afterward. Maybe at one concert your child will just do it when your DS is ready. I found out that raising DS2 is always full of surprises and its when he is ready to do something on his terms and not anyone elses.
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Old 12-01-2009, 03:47 AM   #1976
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Originally Posted by CanadianKristin View Post
Hi Ladies, thank you for your kindness and your support. Having you here, knowing I can connect with someone who truly understands, is such a blessing. Am struggling to find childcare for our son and "weekend away" plans are unravelling. Ah yes, this is the 'work' of autism that isn't just regular parent stuff, in my opinion. It will all work out in the end, always does.

Tell me, how do you handle the holidays and holidays schedule with/for your child? Last year was a bit tricky, this year with all the therapy we've done, B is more aware of his surroundings... I think this is going to be a mxed blessing this year!

Seriously, you guys are my "phone a friend" and "life line" all in one as I've not yet managed to hook into a support group... well, and who has time for one more scheduled event on the calendar really. lol
ITA. I've tried starting a group here in my town, where there are plenty of kids with higher-functioning ASD, so we have lots in common. It's been a no-go every time. Schedules are too conflicting, free time too scarce. Online has been my lifeline, too.

Hugs,
Susan
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Old 12-05-2009, 09:04 AM   #1977
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I just wanted to stop by to tell you about my fb group called "Choice Words", this group was started to help our fight here in my Province of Nova. Our fight we are fighting is to get better Support Services, better Resources, Better Speech Therapy services for ALL children who have Special Needs and Learning Disabilities in our Province. We are just two stay at home mom's who are trying to get better services not only for our two Special Needs children (both Autistic/PDD-NOS) and for other children. We did a presentation to the school board a few weeks ago, it was to make our concern public record so that we could then move onto the government with our concerns. We have met and will be meeting with several MLA's in our area over the next couple of months, we are also meeting with the Education Minister at some point too. This issue isn't just in our province, I am sure it is one that is all over the world! Our group "Choice words" is also in a way a support group too, would love to have you all stop by !
For those of you who don't know me I am a full time stay at home mom of 3 beautiful children (7,5,3), it is our 5 year old who has what we feel is Asperger's with several other underlying issue. We are told by everyone that has worked with our son he has Asperger's, it is the doctor's at our children's hospital who want to "wait and see". We are working on the other issues, OCD, severe ADHD, Sensory issues, Anxiety issues etc. etc. and hopefully he will then get the diagnosis of Asperger's which the other specialists are saying he has. Before I was a full time stay at home mom, I used to work in Preschools and daycares and only saw this behavior in children on the spectrum. My 3 year old is thought to have some sort of processing disorder as well, but they want to re-evaluate things in a year when she is 4!
I am also here with a question, anyone here know how to teach a child that has a visual spatial disorder letters and numbers. You can teach my son letters and numbers (not all at once) in various different ways, but seconds later he has no clue what letter you are talking about at the time. His memory when it comes to letters/numbers/recognition of them is like a etch a sketch, you may draw them out but then if you bump them they are gone...
I am wondering if there are computer programs out there for children with Visual Spatial problems, to help teach them so they can remember???

Look forward to hearing from you, and perhaps talking to some of you !

Catherine
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Old 12-07-2009, 08:35 AM   #1978
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Praying fervently, trusting the God will lead 7 years old James straight into the arms of a search & rescue worker. This little autistic boy wandered away from home, is not wearing a coat, sounds to be non-verbal. A huge snow storm blew in shortly after his disappearance. Please join me in praying for this little autistic boy and his family. It could be any of us, and those of us with 'runners' really could be in this family's shoes.

Lord, keep this little boy safe, return him unharmed even at this very moment. Amen.
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Old 12-07-2009, 08:53 AM   #1979
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Praying fervently, trusting the God will lead 7 years old James straight into the arms of a search & rescue worker. This little autistic boy wandered away from home, is not wearing a coat, sounds to be non-verbal. A huge snow storm blew in shortly after his disappearance. Please join me in praying for this little autistic boy and his family. It could be any of us, and those of us with 'runners' really could be in this family's shoes.

Lord, keep this little boy safe, return him unharmed even at this very moment. Amen.
Amen.
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Old 12-07-2009, 09:29 AM   #1980
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FOUND!!!!
The little boy has been found, I've not found word of his condition. Here's the link:
http://www.cbc.ca/canada/nova-scotia...ey-monday.html

Please Lord, let little James recover fully. Help his mommy through the emotions of this moment. Amen.
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Old 12-07-2009, 10:27 AM   #1981
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FOUND!!!!
The little boy has been found, I've not found word of his condition. Here's the link:
http://www.cbc.ca/canada/nova-scotia...ey-monday.html

Please Lord, let little James recover fully. Help his mommy through the emotions of this moment. Amen.

Alleluia!
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Old 12-07-2009, 12:46 PM   #1982
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Oh Kristin, I'm so glad that little James was found!

Lorraine
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Old 12-07-2009, 02:30 PM   #1983
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How wonderful that he was found . . . what a horrifying experience for him and his family. My son is non-verbal and a "runner" so this story really hits home for me.
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Old 12-08-2009, 06:17 AM   #1984
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It is with deep sorrow that I inform you that 7 years old James Delorey has passed away. This little boy, non-verbal autistic, survived two days in the woods in a snow storm and was found suffering severe hyperthermia. Please hold his family in prayers.
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Old 12-08-2009, 09:13 AM   #1985
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My heart is breaking.......poor little James.....

My thoughts and prayers go out to his family.

Lorraine
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Old 12-08-2009, 10:28 AM   #1986
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My prayers go up for his family. What a tragedy. It breaks my heart.

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Old 12-08-2009, 10:29 AM   #1987
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I am beyond heartbroken for the Delorey family. We are buying the following bracelet for our son, https://www.roadid.com/common/id.aspx?hash=el as he is non-verbal. God help us if he ever wandered away. On the bracelet will be his name, his diagnosis of Autistic/Non verbal, our phone number and my parent's phone number. I know that it would not have helped James, but maybe it can help another little one who may wander from his family and be found by a compassionate stranger.
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Old 12-08-2009, 01:40 PM   #1988
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How heartbreaking . . . I just can't imagine the heartache. Tamburasi - thanks for the link to the ID bracelet - I think I will be getting one.

I just read the news article . . . the tears are flowing and I can't stop them. This could happen to any of us with non-verbal autistic children and that makes the hurt so much more intense. I'm just so, so sad for this family.
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Old 12-08-2009, 01:43 PM   #1989
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It does make me wonder about a personal GPS on my "runner". James' family and all of the searchers are so heavy on my heart today. I was sure praying and hoping and believing for a happy ending to this reality.
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Old 12-08-2009, 02:27 PM   #1990
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This is so sad.
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Old 12-09-2009, 02:21 AM   #1991
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My tears are flowing. I am praying for dear little angel and the family.
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Old 12-11-2009, 07:13 AM   #1992
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Hi Friends,

I'm finding that James' death has just hung over my days and I wish I could just rush to his Momma and hug her and hold her. Since I can't, Ill continue to pray. Amid this sad week as we remember little James and his family, I thought I'd share a funny that happened to us last night.

As you may know, I'm Canadian. And in Canada, hockey is THE big deal for winter sports. We have tons of winter sports... and the Olympics is coming February 2010... but hockey is the one I think most people associate with my fine country.

Our local NHL team has created the Ca.nucks Auti.sm Ne.twork to support autistic families in the province. Last night my family went into the big city to a huge gardens that have been decked out with millions of Christmas lights, then had hot cocoa and made crafts and even met Santa! Not just *any* Santa, but the Ca.nucks (hockey team) Santa. It was a beautiful night, was so fun, was very uplifting for the siblings and parents of our boy. It was truly the first time (I later realized) that I was outside of my house AND was able to truly enjoy the entire event with my family. It was okay when he threw his orange. It was okay when he refused to write a letter to Santa because the paper wasn't plain (white, both sides). It was okay that he wouldn't speak to Santa and that he demanded Mommy "tell him my Lego!". Santa didn't lunge at the kids, didn't try to scoop the kids onto his lap, didn't try and force the kids to talk to him, didn't loudly "Ho Ho Ho!" and freak the kids out. This was an autism-aware Santa and it was awesome. And no loud music. And no huge blinking lights or crazy amounts of decorations. Brilliant.

So...the highlight of the evening for me... oh my goodness... so funny...

Santa was handing out Ca.nucks hockey team posters to all the kids as a little gift. Awesome, who doesn't like a hockey poster?!?!

Well, B was keeping an eye out for Santa as he made his way around the room. As Santa got closer, B got smaller in his chair, avoiding eye contact but tracking Santa all the same. And then as Santa came up behind B and reached into his red bag for a poster, B turned sharply around, stared Santa down with a curled upper lip and flared nostril and said, "Is that a HOCKEY poster? I. hate. hock.kee."

Oh man. I about spit my hot cocoa. Santa, dear, jolly old elf, muttered to me as he turned graciously away, "That's the *cutest* thing I've ever heard!"

OH MAN. The entire event, sponsored by a hockey team... I had to walk away. I was chuckling so hard, Santa was chuckling so hard, the Ca.nucks volunteers were taking it in stride and then chuckling as the story spread.

Seriously the funniest B moment yet!
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Old 12-11-2009, 08:12 AM   #1993
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Kristin - thanks for sharing the cute B story : ) The event sounds wonderful!

We are going to an Autism Society sponsored Holiday Party tonight with Santa. I'll report back on how things go.

I too have been thinking a lot about Little James. I've told the story to a few folks too. Still makes me cry. While I never have to worry about snow in San Diego, the thought of my DS wondering around alone outside terrifies me. It has been added as a goal into his IEP to learn my husband and my first names, my cell phone number and our address. DS has always struggled with the expressive part of speech so adding school's help with teaching him this important info was necessary.

My daddy is a HUGE hockey fan and watches it any chance he gets. He grew up in Massachusetts and played hockey a lot as a kid.

Can't wait for the Olympics and I'm sure Canada will put on a wonderful show for the world to see! I hope Joannie Rochette does well skating in her home country

Have a great weekend everyone!

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Old 12-11-2009, 08:53 AM   #1994
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Hi, ladies. I'm visiting this thread for the first time, and am really in awe of the strength and patience and unconditional love that autism asks of you. My heart goes out to you and your families. In church, we have a small group weekly meeting, and one of our families has an autistic son about 6 years old. I don't know the specifics of his problems, or where he falls on the spectrum. He connects pictures and words, does puzzles, is working on asking us for food before taking, does activities for rewards. He gets therapy and likes an indoor ceiling swing chair, a hammering table, etc. I was thinking of making him a game or puzzle or something for Christmas. Do you have any ideas? Is matching colors a good idea? Or, dry erase? Textures plates, maybe? I hope it's okay that I post here ...
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Old 12-11-2009, 01:23 PM   #1995
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Hi Laureljeanne -

We love it when people ask questions about how to help/play with/interact with an autistic child!

You have some great ideas. I would suggest either matching the colors like you suggested or the texture idea is good too. My DS loves a "texture bucket" they have at school with swatches of material that have different textures to them. (soft, wool-y, shiny, velvet, etc..)

Thank you for noticing this special child and wanting to do something nice for him; I bet his parents will be touched!

Feel free to post here anytime; we're all happy to help in any way we can.

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Old 12-12-2009, 03:49 AM   #1996
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Hello laureljeanne!
WELCOME!!! You are a blessing to this child.
MY DS2 loved primary colors and textures also when he was younger. He still does like certain textures still and he is 13.
The feel of certain textures actually calmed him as it does other children.

Please post her anytime you want. We are always here to help.
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Old 12-12-2009, 03:55 AM   #1997
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Kristin, what a hoot!!!! Great story!

laureljeanne, you have no idea how nice it is to see someone asking for gift ideas for an autistic child. Too often, people shun or ignore our children because they are different. Not all churches have open doors for our kids, either. Bless you and your church for caring. Since he likes puzzles, you could get one of those blank jigsaw puzzles and stamp and color it for him. The matching games and texture bucket Lorraine describes sound awesome, too. Merry Christmas!
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Old 12-12-2009, 08:03 AM   #1998
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Hey, again. Thanks so much for your thoughts on this. I really appreciate it! I'll post what I come up with, if you like. HUGS to you all!
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Old 12-12-2009, 07:12 PM   #1999
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Hi LaurelJeanne,
I think it is so amazing that you have taken such close notice of this little boy's preferences. I think it is so telling of your dear heart that you want to find 'just the right gift' for this little boy. No matter what gift you give, I think the biggest and best part of the gift will be the kindness you are showing in accepting one mother's son just as he is. That mommy will feel so very blessed by your kindness and that will be a gift that just pours right out into her son's life. Blessing to you for your huge kindness. You can't know how mean people can be to autistic families. I feel blessed by your gift just from hearing about your care. Wow. Merry Christmas to you!!!!
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Old 12-14-2009, 11:04 AM   #2000
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Laureljeanne - Yes, please let us know what you decide to do!

Thanks!

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