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Old 11-13-2010, 05:01 PM   #2161
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Quote:
Originally Posted by ikuiper View Post
I am not a parent of a child with autism. I work with children with special needs. They are all 3 & 4 yrs. of age. Many have autism. One year in the classroom I was working in, we had 12 out of 17 kids with autism.
I only had those children 5 hrs. a day. I cannot even begin to imagine what all of the parents go through for their children. Just getting diagnosed to having people understand to getting services must be tiring. I know with my job it is tiring, physically and mentally.
However, the reward at the end of the day that I get is worth it. May it only be a smile, a word, a new sign being taught or finally peeing in the toilet, it's all worth it.
Just want all the parents out there to know that while there are many people out there that don't understand there are just as many that are there for you. I believe God gave me my job for a reason.
Thank you. I counted up all the aides, teachers, therapists, and doctors who've helped my son in the last four years. It's over 39 individuals who have had a hand in his treatment. And it's paying off huge dividends for him. We are blessed with a family that is accepting and understanding, neighbors who ask questions and listen to the answers and invite Jack over for play dates, and a school where inclusion is the norm. It breaks my heart every time I hear of the cruelty, ignorance, and coldness of others for kids on the spectrum and their families. People like you keep us all going. So I say again, thank you.
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Old 11-29-2010, 03:56 PM   #2162
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Default son with autism

hi, i have a son with autism he is 18 a senior in high school, he will be 19 in feb. he was 8 when he was diaginosedd, they told me he would not talk and never read or write, he does talk and does read pretty good, he writes to, it has been a very long and hard road, we are ready to graduate and am thinking it is almost like starting over, where do they go , what do they do , he does have an interest in computer's but since he has services in school i dont think that the college's are equipped to make him succesful... guess i will soon find all that out... just thought i join in here, there is alot more help and awareness now for this spectrum then when we started......
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Old 11-29-2010, 05:42 PM   #2163
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Wecome, bunnymakr! My son is 8 so I will be very interested to hear what others can recommend for your son at this point. Good for you for not giving up on your son. It sounds like all your hard work has really paid off!
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Old 12-03-2010, 10:33 AM   #2164
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Hi Bunnymakr - welcome to this thread!

Like Susan, my son is younger than yours. DS turned 7 in September.

Yes, I bet there is a lot more awareness and help for autistic kids now than when you first started your journey with your son.

Just know - any advice you can pass on to us, we will in turn pay it forward and I think that's something pretty special

DS was totally excited this year about getting our Christmas tree and he loves hearing Christmas music on the TV.

I'm going to try to take a picture of him with Santa tomorrow. We will be at a fun event sponsored by a local hospital. Free cookies, juice and pictures for kids to come see Santa in the hospital lobby. No mall crowds or noise; just a more intimate setting that may help in getting a picture
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Old 12-13-2010, 04:32 PM   #2165
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Default Wow! Who would have thought.......

....I would find an Autism thread on a stamping site????

I haven't had a chance to read anyone's comments yet, but I am married to a man with Asperger's and we have a son (1 who is on the spectrum.

It has been a wild ride I can tell you. The mood shifts (especially with my DH are enormous) but not so much for our son. Probably because he is in his comfort zone living at home.

Brian (our son) has always done terrible in school, can't multitask, and is a hands-on learner.

Had him tested in his senior year and has shown to have mechanical abilities, but has never been given the chance to reach his full potential with this (except through Legos which he is outgrowing).

He has applied for an Auto Technology program at our local community college and hope to start Fall 2011.

So, hello, to everyone. Me thinks we are in for a wild ride.....

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Old 12-13-2010, 05:52 PM   #2166
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Default Have read many of the comments.....

To continue my previous reply since reading....

Brian is now 18, but.....

Potty Training: The only thing worse that this was when he got the chicken pox and didn't sleep for like 5 solid days... We moved in to an apt when he was 3 and the boy next door showed him how to pee. Thanks be to God.

Speech: Didn't talk hardly at all. The easiest kid I ever took care of. Very quiet, self absorbed. By 8th grade he was finally diagnosed with expressive language disorder (a common characteristic of autism). He was three before he could tell me he was hungry. Thank goodness we had him on an eating schedule or he probably would have starved to death.

Food/Texture issues: Lived on only about 5 things when he was a baby. Had to drink soy after I stopped nursing him. Took him over a month to figure out how to nurse......If he had his way, he would live on Minute Rice with soy sauce, toast (barely toasted) with real butter, ice cream (peanut butter and chocolate are his favorite), and Eggo waffles with peanut butter and Log Cabin syrup.

What saved us as he got older is he started hanging out with kids who ate "normal" foods so through the years he has taken in hamburgers, pizza (cheese only), chicken nuggets, fries. Will eat mashed potatoes (plain), peas, and corn. Very little fruit but will eat applesauce and bananas if I nag him enough. Two of his friends come from a family with autism so Brian fits right in. That's been great.

Obsessions: From the comments I have read here, Brian fits right in. Anything spinning, gears, trains (loved Thomas the Tank Engine), road construction (used to buy McDonald's fries and go sit and watch the machinery in action), Pokemon, escalators, elevators, anything about weather especially tornados (knew the Fujita Scale and placement of all the planets at a young age), some fascination with maps. Now he is on to video games to the detriment of his school work and love YouTube watching the mechanical videos on cars. Has always liked the Military Channel, Weather Channel, History Channel, and Discovery Channel.

He hated any typical children's books but would love any books about the ocean, weather, trains, and the only series of books he would read was the Captain Poopy Pants. Now that I know more about autism, I can see the fascination for this series.

No Meltdowns to speak of unless his dad has them and then gets Brian wound up. Lucky there.

Brians biggest gift has been mechanical. Three years of age he was able to drive those battery operated cars in the kids amusement areas. His driving was so impressive (never wrecked or went off the "road") that the workers would comment on it.

By second grade he could drive a 4 speed small pick up truck by himself and has since been given a fixer upper by his dad that he absolutely loves.

This hasn't been an easy road for me, the neurotypical spouse. My husband refused to have anything done for Brian saying it would make him more self conscious. By the time Brian was in 8th grade, I had had enough. I insisted he be tested so the school could grant him waivers in classes he was doing poorly in (foreign language), I went in to therapy for two years, and got the faith I so desperately needed.

I have just celebrated 20 years with my Asperger husband and have decided to stay with him. His family has been extremely supportive being there when I really needed them. That has helped a lot. Married to Autism, you have no social life let alone a life together. You basically become their caregiver. Once I figured that out, it has helped me cope much better.

I have a great sense of humor, good organizational skills, and can get along with almost anyone (hey, I married a man with Aspergers...anyone else is a piece of cake!!), and love being around people. I see now autistic people look for that in a spouse to help them navigate in the real world.

I know this was way more than anyone really needs to know, but it was so nice to find this site. I will continue to read the comments and help where I can!

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Old 12-14-2010, 05:40 AM   #2167
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Beaglelover,

Thanks for sharing so many details...oh how they sound familiar! Welcome to our group!

Hugs,
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Old 12-14-2010, 01:11 PM   #2168
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StampinMamaTo4:

Hello! I am Teresa (aka Beaglelover) and am married to an Aspie Man. I was laughing when you typed about the eccentricities. I could go on forever from the meltdowns to hiding in rooms when people come over. Took years before I could figure out what was going on (we have been married 20 years this year). Has no use for counseling and we can't even discuss it so this site has been wonderful (just joined).

Our son Brian is 18 getting ready to graduate and except for testing has had very little therapy of any kind. Feel like your alone when your DH and DS are around?? Well, join the club!!!

Dinner is a nightmare because no one eats anything that someone else will eat. I have the "try a bite of everything" rule. Works for Brian but not for my DH.

I, too, have worked on as many real life skills as possible with him. This Spring, he will be going on a short trip that requires flying and a transfer. It will be a piece of cake for him and he is so stoked to go.

Also, our son is able to drive and, I might add, is much better than his father (whom I will not ride with any longer).

Life is interesting here. Thanks for this thread!

Neurotypical moms: UNITE

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Old 12-14-2010, 01:25 PM   #2169
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bunnymakr:

What are your son's gifts? What does he do well? Our 18 y/o is mechanical (think automotive), but has had very little experience with this as my Aspie DH was so busy trying to make an engineer out of him.

Brian has never liked to read with science, history, and foreign language being his worst subjects. If it is just memorizing to regurgitate the info, you can forget it with him. He also suffers from test anxiety probably because he cannot retain the information for the tests. This year, I stopped nagging him to study because it wasn't doing him any good and wearing me out.

We had him tested this year (the second time we have had him tested) and the basic diagnosis is "living by the seat of your pants" !!

Neither my DH or DS can do any long range planning especially if they are not interested in the subject. However, if it is a vacation, my DH micromanages it so much that I am exhausted before we even go on the trip!!

My Aspie DH is an engineer. Need directions??? He can give them to me, but by the time he is done I can't even remember where I was supposed to go!! Too much insignificant detail.

I hope this email gets to you as I am unsure how to respond to a person's comment here.

Well, gotta go.

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Old 12-14-2010, 02:41 PM   #2170
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Beaglelover -

Welcome to our fun group!

What a very special woman you are - married to an aspie and a son on the spectrum. Quite the load, but your humor shines through in your postings and your men are lucky to have you!

Looking forward to more "chats" with you!
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Old 12-14-2010, 03:45 PM   #2171
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Lorraine,

Thanks for your kind comments. I see so many here who struggle and have multiple kids on the spectrum, I just don't see how they do it. What a strong group of women I have found here!

This is my second marriage (no children in my first marriage). Trade alcoholism for autism. I would rather deal with autism any day!

I am so looking forward to this next adventure with our son (college). He is looking at a local community college here and will live at home so I think it will be perfect in that regards.

I think the reason I got through all these years is that I just plain didn't know what was going on. No sense in beating myself up over the what ifs, or why didn't I.

My Aspie DH's obsession is Legos. Even the mailman started commenting on all the parcels coming in the mail. Most of them are downstairs. We had a repairman come one time to work on something in the basement. Took one look at all the Legos, and thought we had a day care center going!!!

When the days are good they are great (13 year wedding anniversary he hired California Closets to convert our dining room into a craft room for me), but when they are bad they are awful (I have never gotten used to the meltdowns).

Thanks again for all your kind words. I think anyone that deals with autism on any scale is a Saint!

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Old 12-15-2010, 10:14 AM   #2172
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Hi Beaglelover -

I too wonder how the women with multiple children on the spectrum deal with everything....

Like you, I have been married before. Sometimes the 2nd time around is the right one!

Our DS is our only child also. We were thinking of a second child around DS's 2nd birthday but could tell something else was going on with him and decided to devote 100% to him.

My DS is 7 and we finally got "autism" on his IEP just this week! We started 3 years ago with "speech-language impairment" on the IEP. The school psychologist was surprised when I adamantly asked for the autism diagnosis when DS's re-assessments started 2 months ago. She's used to parents who either don't want the "big A" on the IEP or are just in denial and think that "it must be something else". Whereas I was asking (demanding) it I wanted the correct diagnosis in order to get specific services/activities for him.

Legos huh? Sounds OK to me And perhaps if the fascination passes, think of the daycares you would be able to bless with them!

You are right - all of us here are a strong group of women - you have to be the advocate/guardian/caregiver of whomever in your life is on the spectrum to make sure they are safe and well-cared for.

Certainly not always easy, but so rewarding!

Take care-
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Old 12-15-2010, 11:35 AM   #2173
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Lorraine,

You are the best. I know your son is going to do really well thanks to the fact you have been such a terrific advocate for him.

One thing I forgot to share with everyone here is neither my DH or DS have ever been formally diagnosed, but I know they have it. You just have to live with for nearly 20 years (18 with DS) and you can pretty much figure it out.

I have figured out through the years my DH didn't want Brian tested because he knew I would figure out he had it too. Very sad. We have the best Aspie doc in the state right here in our town. To be unable to utilize him, has nearly broken my heart. Now DS is too old and wouldn't go anyway.

There has been lots of positive milestones with Brian. The fact he can manage his money to some degree, drive, and this fall, stayed a week in our home alone while DH and I attend a family wedding back East has been encouraging. While we were gone (besides doing a great job getting to school and attending all his classes), he also house sat for two people by caring for their animals and plants.

Like many on this site, I cannot stress the importance of teaching them real life skills and the sooner the better. For me, money management was absolutely mandatory. He has been learning about this since he was three.

For everyone it is different. I have failed in the hygiene department and he only outgrew some of it just because he got older. He still can take a shower and not get his hair wet but is getting better since he has gotten older. We had major toilet issues until he was a Freshman in high school.

I also have a SIL whose sister has autistic twins. One now has developed epilepsy. My SIL quit her job at HP after 25 years to help her sister care for the twins (they are five, I think). Very heart wrenching.

Well, enough. I have to put my domestic hat on, Lorraine. That is the last thing I would like to share. For all the strife we are going through, I have been a SAHM which has helped a lot. My hat is off to all you gals here who have to hold down jobs and deal with autism.

When you get to the pearly gates, God will just let you walk right through!!

Beaglelover

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Old 01-05-2011, 04:50 PM   #2174
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Hello everyone! I didn't think there would be a thread for this until now. I have three kids and my youngest, Christian, turned 7 in November and was dx'd at 2-1/2. He's in the first grade now and is verbal. He is able to express verbally what he wants and is pretty much ok when we're out and about except for one thing: he pokes the eyes of smaller kids. When he was in Kindergarten, the school said he poked the eye of three kids who all had blue eyes. We thought that it's because he probably wondered why the eyes were blue. But lately, there were two occasions that he poked the eye of two boys, one is 4 and the other is 2, and they didn't have blue eyes!!!! I have yet to share it with his Teacher but we are really attentive when we're outside the house if there are any younger kids around.

Has anyone had the same thing happen to your child?

The one thing that I'm hoping for at this point is for him to express feelings. I'm not quite sure how to do it except that we just try and "talk" to him more. My two older kids are a blessing. My daughter is turning 18 in two weeks and my son is 15 and they have been very supportive.


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Old 01-06-2011, 03:24 AM   #2175
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Welcome, Tina! Sorry I can't help you with the eye-poking issue. Hopefully someone will have something useful to suggest.

How was everyone's Christmas? Jack loves Christmas ("Christmas is my most favorite time of the year, Mommy!") but he stimmed a LOT the whole two weeks off. Now that he's back in school, it's calmed down quite a bit.

Funny church story. We were sitting in the crowded sanctuary Christmas Eve waiting for the service to start. My husband was pestering Jack, who turned around and quite loudly said, "Numb Nuts!" We shushed him, and he said, "Well, that's what dad says!" Nick, George and I were hopeless laughing...so Jack smiled at me and said, "Well, at least it's funny!" The older couple behind us tried really hard not to laugh. So glad we weren't surrounded by judgmental prudes, LOL!

Do you all have any funny holiday stories? Come on, share them!
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Old 01-06-2011, 11:11 AM   #2176
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Hello ladies, I've suspected that my son, Brendan is Autistic for some time. I just returned from having him tested, and it's official. He's on the spectrum. So now we are just waiting for the IEP meeting to get him enrolled in school (he's 4 and will turn 5 next month).

I am so grateful this thread is here. I rely on my "stamping sisters" for so much support in other areas of my life. I'm off to start catching up on this thread. 55 pages is a lot of reading.
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Old 01-06-2011, 11:49 AM   #2177
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Monica - I remember reading about your concern regarding your son in another thread here at SCS. You've done the first step by getting him assessed - good for you (and him)! Keep us posted about your upcoming meetings and ask questions if you need to. There is a wealth of info and knowledge on this thread and we're all in this together so reach out!

Susan - no funny Christmas stories here. Jake was sick on Christmas Day and actually spent all day in bed getting sick : (
Poor guy! He did rally back the next day and was ready to open his presents by lunchtime. We tried 4 different Santas at 4 different places (all places where he feels comfortable) to no avail in getting a picture of him with Santa. He did love the whole holiday feel though - especially the Christmas music on TV. He is on school break now but I can tell he is ready to get back to the routine of school.

I've been listening on the radio today about the whole fradulent study done by that doctor regarding a connection with the MMR vaccine and autism. A lot of people are shell-shocked to find out that this doctor blatantly padded the numbers and put forth wrong information. Somebody slap him please! I personally never believed the whole "immunization/autism" link but I know of people who do.

Like we don't have enough to deal with........*sigh*

Wishing everyone a peaceful 2011; here's to it being a wonderful year for our wonderful kiddos
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Old 01-06-2011, 01:13 PM   #2178
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Hello everyone!

Thanks Susan for the warm welcome.

Lorraine, our sons are the same age. Wish we could meet up sometime, even though we're hundreds of miles apart.

Like Monika, I will need to browse through all these pages of replies which I'm sure is a wealth of info. I may have to work my way backwards starting from the most recent posts.

I have a question though: is seeing a DAN doctor really worth it? I know that right now financially I'm not able to do it, but if it's something that would really help then I'll work harder for it.

Any thoughts on this would be totally appreciated.

Thanks.


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Old 01-06-2011, 02:39 PM   #2179
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Tina - first off, my apologies for not welcoming you in my last post! Like Susan, I have no advice on the eye poking behavior. Sorry : (

Yes, we are hundreds of miles away from each other but at least we are in the same state! Maybe our paths will cross one day.........

I have never utilized a DAN doctor for my son. Maybe someone else here can offer suggestions?
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Old 01-21-2011, 05:12 PM   #2180
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Hi everyone and a Happy Friday to all! Tomorrow I'm bringing DS to the dentist, he's 7 and this will be the second time he'll be seen. He already lost two lower teeth last year and so far everything still looks good. There's one problem though, he is still into the toddler toothpaste. His Pediatrician said a long time ago that as long as he is having his teeth brushed then by all means continue with it. I specifically looked for a Pediatric Dentist who has special needs patients so we'll see how he'll behave tomorrow. Will keep you posted.

I'm so excited because this weekend is the first "free" weekend I have since November. We moved to the house in August and since then, it's been crazy busy. So when I get home from the dentist, I will start my craft room reorganization project. I vowed to myself that I will not buy any storage items and will work on what I currently have. I'll be taking pictures of the progress I make.

What's everyone else up to?
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Old 01-24-2011, 01:13 PM   #2181
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Hi Tina -

Let us know how it went at the dentist.....I would think as long as his teeth get brushed, what type of toothpaste is used would not matter?

Dentist visits are torture for DS. I have to take my sister to help hold him down. He cries, I cry and my poor sister just tries to get both of us to calm down We go every 4 months or so just so the cleanings go faster.

Glad to hear you have a weekend for yourself - that's so important!

How's the craft room coming?
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Old 01-24-2011, 04:41 PM   #2182
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Hi Lorraine!

First visit wasn't so bad after all. I was prepared for the crying and tantrum, this is the main reason why I looked for a Peds Dentist, and not just our family dentist. Anyway, when we arrived he was happy to see that there was a pacman cocktail table in the waiting room so he started playing while I filled up the forms, etc. After a few minutes, the Dental Asst called him. DS stopped playing and followed us. While walking in the hallway and he sees the "tiny" rooms, he stopped and didn't want to go inside and walked back to the waiting room. I followed him, tried to "talk" him to come inside, nothing. To cut the long story short, after a few bouts of going back and forth from the waiting room and the exam room, he starts crying and laying down on the floor. Dental Asst was a well-built gentleman, asked me if ok for him to pick him up, in the midst of the crying he asks me if I want him to sit on me or they can "wrap" him. I almost opted for the second one, but when I asked DS if he wants to sit on my lap, he said yes so while he was still outside, I went inside and sat on the exam chair and Dental Asst picks him up and placed him on my lap and I gave him a bear hug (can't describe it well but for sure you can imagine it). DS was crying but didn't fight with me (believe me he can be a very strong boy, and if he was determined to get out of that position, I will not have the strength to hold him). Hats off to the Dentist and the asst, they were well equipped and ready, Dentist had fast hands as she tried to clean the teeth as fast as she can. Good news, no cavities........whew, you don't know how relieved I was, she said that he is a drooler so there is less tendency to have cavities. PLUS, I am happy that all this time that I said NO to chocolates and candies paid off, I am financially strapped as my DD and middle DS were both on braces. As soon as Dentist said "you're done" he stopped crying, like a switch that you turned off, and gave a high 5 to her. Overall I'd say it was a pleasant experience, it'll be another six months. Dentist advised me to look for Tom's of Maine toothpaste as they have different flavors, OR to continue with the toddler cleanser but add ACT rinse, I have to clarify with her how he can use it when I don't think he can spit it out.

Craft room is looking better. I was able to create thank you cards on Saturday for DD who recently celebrated her 18th b-day. I plan to make hopefully a couple of dozen V-day cards for her to sell to her friends in school and to my coworkers. I said to myself if only I can do two cards each weeknight, and ten on the weekend, then I should be able to surpass my goal. That remains to be seen, and will keep you posted.
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Old 01-25-2011, 12:02 PM   #2183
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Hey Tina -

Sounds like you found a good dentist office! I know what you mean about "wrapping them up" - we had to use the papoose board one time at DS' dentist. My DS is the same as yours - when the assistants are done - he stops crying and high-fives them

Glad to hear you got to make some cards. Nothing like some crafting time to help balance life out!

Well, it's official, I got DS' IEP back yesterday; it was his tri-ennial reassessment. They FINALLY changed his DX to autism. It had been speech-language impairment. I totally expected it (and had even asked for it) but to see it in writing made it "real". There it is........in writing.....confirming what we have known for about 2 years now.

How is everyone doing? I haven't seen a post from Canadian Kristin in a long time.
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Old 01-25-2011, 02:25 PM   #2184
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Hi everyone - I have not posted to this thread in some time - looks like some new people. My name is Tamara and I have an 8 year old son with Autism and a 9 year old daughter with Aspergers.

Tina - I'm so glad you found a great dentist - they are so hard to find. I found one as well and he has been so wonderful with both my children... really understanding. He puts my son on my lap and has him lean back into his lap for cleanings - very effective for us! Unfortunately DS has a lot of dental problems so we had to have a surgery not long ago to do a bunch of work at once, but he's doing great now.

I had a very upsetting appointment with a neurologist the other day - has anyone ever utilized them? This doctor was part of the Dan Marino center for autism and I was very excited because I thought I would finally find someone who knew something about autism that could help me with my son. The exam started out OK, but the doctor got very upset when I told him I was currently in between pediatricians because I hadn't found one I liked yet - we are new to the area and I've tried a couple, but none have been very good for different reasons.

Anyway, then his assistant opened a cupboard that had all kinds of toys in it - of course, DS wanted the toys so he kept trying to open to cupboard. The doctor literally screamed "NO!" at DS several times, and even raised his hand. I stood up at that point trying to intervene and he told me he was the doctor and he was conducting his exam and that if I didn't let him continue I would not get a true assessment. I sat back down and he continued several more times to yell very loudly at DS. Of course, I'm dying this whole time because I tell DS "No" a certain way, and I know how to make him stop, but I was trying to let the doctor do his thing.

Next, he examined DS's legs because DS is a toe walker and is having difficulty with his hamstrings. One pediatrician suggested CP, so I was interested as to whether or not this was the actual diagnosis. The doctor informed me that if he was toe walking he obviously had CP, like I was some kind of idiot. I've been taking this kid to doctors for years and no one has ever suggested CP until now.

Then the doctor starts asking DS to put his socks on... DS can not put socks on yet. He can do pants and we're working on shirts, but no socks yet. So after a few requests the doctor tells DS to ask for help - so DS looks at him and says "I want help please". The doctor refuses to put his socks on and tells him to ask mom. Now I figure he just doesn't want to put the socks on and I stand to help him because DS and the doctor starts telling me that he has seen hundreds of kids like my son who aren't doing well and will never get any better because their parents enable their behavior. I got upset at this point and I start tearing up, at which point he tells me he never found it much help to enable their parents either.

I've been so upset since this happened... I try so hard and DS is just not easily motivated - he doesn't get excited over any type of reward and has a very short attention span. Teaching him to pick his clothes up and put them in the hamper after changing took over 6 months. Any words of advice out there - has anyone had a doctor be so judgmental during a visit?
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Old 01-25-2011, 02:50 PM   #2185
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ajmac, I am so sorry you had such a HORRIBLE experience. I haven't had to go to a neurologist yet. What is so troubling about your visit is this doctor is part of a network that is supposed to specialize in Autism. The neurologist (of all people) should have been very sensitive to your situation. Not to mention this professional should know that all children with this condition are very different.

Hugs to you and your DS.
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Old 01-25-2011, 05:08 PM   #2186
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Thanks - that's what I thought too - of all people to go that direction, it shouldn't have been someone from there...
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Old 01-26-2011, 03:48 AM   #2187
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Tamara, that doctor was an idiot with a horrid attitude. If I were you, I would file a complaint about his behavior with the clinic. No doctor should EVER bait a parent like that or act like she's an idiot for not knowing something--that's why HE went to medical school for so many years, to know things and use that knowledge for good. He was unkind, unfair, unhelpful, and unprofessional. He should realize the stress you are under and not add to it. Furthermore, he needs to hear that his behavior is unacceptable. Too many doctors get away with this kind of crap because patients (or their parents) don't call them on it. Plus, I'm sure the clinic wants to know if one of its doctors is behaving this way.

Dang, I want to fly to Florida and dope-slap the jerk!

Also, it's important to get a definitive answer on the CP diagnosis...that may make all sorts of resources more easily available to you through insurance or the state that you may not already have.

Big, big hugs to you!
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Old 01-26-2011, 07:59 AM   #2188
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Hi all!

Tamara, I agree with Susan, that was unacceptable and totally uncalled for. A big hug to you and your DS. I am hoping that that was a one time consult with this MD? Coz if your DS needs to see him again then by all means find someone else.

Lorraine, glad the IEP went well.
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Old 01-26-2011, 10:25 AM   #2189
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Tamara -

I agree with everyone else has been saying.

That doctor is a total jerk!!!

Like Susan, I want fly out to Florida and bi**h-slap him

I shudder to think of how many parents/children he has acted like that to.

Hugs to you and your DS.
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Old 01-27-2011, 10:00 AM   #2190
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Thanks again - I do want to go back and get the MRI done because that will show if there is definite evidence of something leading to the muscle/tendon problems, but I have found that there are a few other doctors there and I am going to make my return appointment with one of them...

Thanks so much for the positive words - I spent several days doubting myself and wondering if what he said was true. I mean, in one way I realized he was being a complete *&@#$# but on the other hand you still can't help but doubt yourself in these kind of situations, since they go out of their way to point out that you are not the expert... and DS is just so much more symptomatic than a lot of other kids in his age group now, and I always have that niggling fear that I haven't done all that I can... anyway, thanks again. It's great to have this board here to encourage each other!
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Old 01-28-2011, 11:05 AM   #2191
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You're definitely not alone in wondering if you have done all that you can for your child - I feel like that a lot!

I just registered for a free (yay!) class about special needs trusts. The workshop is going to help lead us step-by-step through the process of preparing a special needs trust for our son. This is something I have wanted to learn more about and how nice to get some info for free.
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Old 01-28-2011, 03:26 PM   #2192
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Happy Friday everyone!

The school where DS goes to recently offered a seminar on special needs trust. I wasn't able to go. I hope they do it again.

On Tuesday I will be attending a Parent Orientation at the Regional Center so we can start DS' home therapy support. It'll be nice to finally have a dedicated space at home for this.
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Old 01-28-2011, 06:17 PM   #2193
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I went to one last year - it was very helpful, but the particular one I went to was very expensive... will have to wait until I'm in a better place to get it started...
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Old 02-01-2011, 01:24 PM   #2194
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Hi all! Off work today and just came home from the parent orientation at the RC. I have to do the 16 hour parent group meeting first then the in home therapy begins. Too many vendors, so many choices.....it'll probably boil down to the nearest one to home. Just hope I get a compassionate BI, I know I didn't have a very good experience the last time so hopefully it'll work this time.

How's everyone doing?
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Old 02-02-2011, 11:05 AM   #2195
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Hi Tina -

We're lucky to be in California! It looks like so many of our friends in the Northeast are getting slammed with that nasty weather. I'll take our earthquakes over days and days of snow.....

We're doing good. I went and looked at 2 different elementaries in the last week to see whether they would be a good choice for DS to move to for 3rd grade in September.

The first one is our home elementary which is the ONLY school I can get bus transportation for. Um......no thank you. The few special-ed kids who attend there are lumped in with a gen ed class (32 of them at one time in the room!) and then are pulled out for whatever special ed help they need. No dedicated classroom for them and their pull-out work gets done in a small room that isn't set up as a classroom. The only saving grace for this school is they are the ones that take the "medically fragile" kiddos. All of them in that room have mental capacities that don't exceed 2-years of age. Very sad and humbling to see all the kids there. But I'm sure it's a godsend for their parents to have a place for them to get educated at.

Second elementary was a bit better. It's within walking distance of DS' after-school care provider so she could walk him back there at the end of each school day. Again though, no dedicated classroom for special-ed kiddos. There are only 3 of them there right now - all boys who are moderate/severe classification like DS is. They do get pulled out into a separate room for their work; at least this room is an actual classroom. They don't have a mod/severe teacher at this campus. They dropped the hint that if DS came there, that would give them 4 kiddos who would need a mod/severe teacher and while they couldn't guarantee they could get a mod/severe teacher for the 2011-2012 school year, they could at least request one. Um.....no thank you. The school does have a good principal and school psychologist though.

So now I will fill out the choice paperwork to keep DS right where he is at for at least another year. We aren't unhappy with anything at his current school but there is no transportation offered to get him there since we are out of the school's boundaries. I'm lucky to have a supportive boss who lets me be late to work every day so I can take DS to school. We pay a teachers aide to drive DS the six miles to his after-school care provider each school day. That has worked out well and she is going to stay at DS' school for at least another year so that will be the plan for now.

I'm going to ask his current teacher and the teacher he will get for 3rd grade to really push him to get used to as much inclusion as he can handle. It's definitely what is on the horizon for him as he gets older and moves up in school.

Anybody have stories about inclusion? I'm happy to listen to the good, the bad and the ugly.....

Thanks
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Old 02-02-2011, 12:40 PM   #2196
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First of all, Jack is very high functioning and verbal, so our experiences are probably different from the moderate/severe kids in our district. In fact, I know they are, but that is another story.

Our school district pushes inclusion and it's been wonderful. At the beginning of this year, Jack's 2nd grade class was a bit stand-offish. Who is the weird kid singing Thomas the Tank Engine songs, making funny noises, talking to himself, and waving a pencil around like a wand? His intervention specialist gave a presentation to the class to explain what autism is and how they could help Jack learn by being his friends. The class LOVES him now. They come up to me when I'm volunteering and tell me stories of Jack's successes and brag about how they helped him hit the pins while bowling in gym or how proud they are that he reads so well. They recognized that he's one of the best readers in the class and don't care that he gets pulled from the regular class for math and therapies. They're always happy when he returns to the class. It's really cool.

He saw a friend from class at the YMCA pool recently. The two boys played like regular kids...a very unusual thing for Mr. Parallel Play!

Jack has a full-time one-on-one aide in the class, mainly for attention problems. He has so many issues focusing in the classroom, even though his regular ed teacher is definitely sensitive to the sensory challenges. The intervention specialist is almost finished with her PhD in autism education, and she makes sure everyone who interacts with "her" kids knows what they need to know to push them toward maximum independence and learning without overloading them.

We have an ideal situation for Jack. And you know I pray thanksgiving for it every single night!
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Old 02-03-2011, 12:07 PM   #2197
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Hi Susan -

Yes, what an ideal situation you described! I love hearing real-life stories like that! I'm so happy for you and Jack; what a wonderful environment for him!

I talked with Jake's teacher this morning and we agreed that his inclusion time will be increased as much as possible. She said he was very reluctant at first but has settled down into a routine with it. I knew we had turned the corner with it when he was actually pleasant to the gen-ed teacher who does his inclusion. We see her every morning while we are waiting for his classroom to open and before, he would not want to greet her nicely when she walked by. But earlier this week, when she walked by, he actually said "Hi, Miss (her name)". She stopped dead in her tracks, looked at me with a huge grin, and said "Did he just say what I thought he said?" I said "yup" and we smiled at each other. Victory!!

We'll see what the rest of this school year brings. He will be staying put at his same school for the 2011-2012 school year as long as they approve our open enrollment application (which I have been assured will go through with no problems).

I definitely know that he would require a one-on-one aide if he were to spend a long length of time in a gen-ed setting.

Thanks again for the feedback
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Old 02-04-2011, 06:19 AM   #2198
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Sorry it's been a while since I've posted. It's been a rough stretch since the holidays and the total disruption of my son's schedule. We're still not fully recovered.

An update: My son is still not talking and is refusing to use PECS now. I'm as stubborn as he is; he at least has to point to what he wants or use some sort of utterance. He's unfortunately using head-banging again when he is frustrated, which is often. AND he's up for about 4-5 hours each night again. I was hoping we were done with that. Has anyone ever tried melatonin with their autistic child? If so, what was your child's experience like?

Here's one positive thing - After nearly 2 years in the same building for Early On and now ECSE, my son finally is walking in by himself! For the first year it was carrying only, and for the second year it was a wagon. For the last 3 days he has walked in with his favorite helper and absolutely no tears. Hopefully this will continue AND he will do this with more than just Miss Jodie.

From October - December last year, my son had 60 hours of behavior therapy through the Autism Center he attends. It was run by grad students and undergrad students in the behavioral psych program at one of the local universities. The price was right - only $50.00 per hour! It took a while, but by the end, my son was sitting at times for almost 13 minutes, was matching objects, and responding to a few one-step commands! This from a boy who wouldn't sit without physical restraint at all just a short while ago and still doesn't respond to his name. Unfortunately, though, they didn't have enough students to run the program this semester, so we're without the behavior therapy. They are hoping to offer the program again in the fall - we'll definitely add that to his plate again!

I had to make a huge decision recently about my return to work. I've been on leave from my teaching position for the last 6 years. The poor economy and my successive maternity leaves enabled me to take this number of unprecedented years in a row without losing my job. Last year I was told this would be my last year, so I was preparing to go back. I'd been looking for care for my son since October and wasn't enjoying the search. It's extremely expensive and emotional to find the right person to care for a non-verbal autistic boy. The expense wasn't even as much as a concern as finding someone who would lovingly take care of him . . . we all know the abuse of special needs kids is much higher than we'd like to admit. Anyway, I went to talk with my superintendent about my return, and he offered me another year! I thought my husband would agree with my thinking that I should take the year. It would halt the childcare search, would allow me to continue making sure I'm doing all I can to help my son, as well as not add 160 students and all the planning/grading that goes with that!

Well, to my surprise, my husband wasn't happy at all. In fact, he told me he was disappointed that I was even considering taking another year. His main reason was financial as well as believing that being more removed from my son's care would allow me to not be as unhappy and stressed as I've been over the past few years. I argued that the amount we would spend on care would negate much of the financial gain we would receive from my return to work. And, still without insurance coverage for necessary autism therapies, the bulk of my son's therapy continues to rest on my shoulders.

Well, to make a long story shorter - I took the leave (of course, the board still has to approve it) (and btw, the decision had to be made by Feb. 2 according to our contract). We're lucky we have a lot of credit we can access on our credit cards - we've already refinanced our house, borrowed from his family and mine, had a community-sponsored fundraiser for our son, and have borrowed money from our retirement accounts. But, the way I see it, I don't want any regrets that I didn't try everything for my son in the first 5 years of his life (which they say is the most crucial for early intervention). AND, I'm extremely lucky that my other 3 children are adjusting very well (school even had an "autism" club for 4 girls who all have brothers on the spectrum). I have great friends who are helping me make sure they still are getting to all their activities (basketball, girl scouts and dance).

Thanks for reading. I hope everyone finds surprising support in this journey!
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Old 02-04-2011, 06:35 AM   #2199
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Re: inclusion.

This is one of those areas where the expanse of the autism spectrum makes individual decisions in regards to inclusion so crucial.

I do not believe in a one-size fits all inclusion policy. Susan's experience with her son's district points to a wonderful example of how inclusion benefits EVERYONE. Sometimes, though, the inclusion goals of the special needs child benefit others at the expense of that special needs child and that's where I find a one-size inclusion policy falls short. I can speak to this from my own experience as a general ed teacher in a district with full inclusion in the middle school in which I taught for 12 years, as well as now from the vantage point of a parent with a severely affected autistic boy who, if he continues to not make significant gains in the next year and a half, will NOT benefit from inclusion in a general ed public school.

I truly understand autistic children needing to be around typically developing children, and I truly understand typically developing children needing to learn compassion for those who are differently-abled and differently-developing. But in the long run, in my situation, I don't want my son's true educational needs by-passed so that other kids can feel comfortable around kids like my son. My son needs intense therapy so that he can learn to communicate, learn how to toilet-train, and hopefully become a more well-adjusted human being.

So again, I write, I just hope inclusion decision are based on a child-by-child basis. To often, the scales tip too far one way or the other, and the potential for great gains by both the special-needs children and typically-developing children is lost.
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Old 02-04-2011, 12:29 PM   #2200
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Andrea -

First off, a big HUG to you to help with everything you have been dealing with! My goodness! For what it's worth, I think you made the right decision with your work. Like you said, the first 5 years are so important when dealing with an autistic child. You know your child better than anyone

Thanks too for the insight regarding inclusion. Everything you said makes perfect sense. As I was in those other elementary classes, I would think "can Jake be happy and successful here?" and I kept thinking "NO". I know my boy is not ready for more inclusion and when it does start to increase in length, it needs to be with teachers/aides/classrooms he is already familiar with - not a new campus with new people.

LOVED the idea of the "autism club" for those 4 girls - what a clever idea! How nice for them to have each other to hang out with and talk to.

Take care and check in again when you have time. We all care!
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