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Old 02-04-2011, 01:54 PM   #2201
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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!
I am wondering how functional your son is - is he pretty verbal and able to sit and attend without assistance? I keep begging for inclusion and they will not even consider the idea for my son... he is not really verbal beyond simple requests right now and he would have to have a para with him... but I still think inclusion whenever possible is a good idea. Our old school in Virginia made great use of inclusion opportunities, but where we live now they are completely uninterested...
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Old 02-04-2011, 01:56 PM   #2202
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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!
We use melatonin at bedtime... it's great for getting my son to sleep but does not necessarily keep him asleep - he still wakes up at 2am one to two nights a week... but at least I can usually count on 9pm bedtime...
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Old 02-04-2011, 06:46 PM   #2203
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Andrea,

You are absolutely right...inclusion must be considered on a case-by-case basis. It's working for us, but not so much for others. And as for your personal journey, I hope another year off ends up being a very good thing for everyone in your family!

Lorraine,

Follow your instincts. We know our kiddos better than anyone else. Sounds to me like you're paying close attention and doing an awesome job!
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Old 02-04-2011, 08:54 PM   #2204
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Hi Andrea! I'm pretty new to the thread and still trying to read the 50+ pages of posts. I'm glad you're able to update us.

I remember the time when DS was in preschool, the teachers had to literally "drag" him inside the classroom coz he was crying and would just lay on the floor. There was also a time that he won't ride the yellow cab in the morning and would just cry out loud. I guess what I'm trying to say is that it'll change and get better. The one thing that I remember from when I was actively attending the TACA support groups is that in our journey, there'll be ups and downs, and as long as we have the necessary tools, we can always bounce back.

How old are your three girls? I guess I'm lucky because my DD just turned 18 and my middle DS is 15. They have been a big help, I owe them a lot.....they have missed out on a lot of after school opportunities because they have to be at home straight from school so that they can receive DS from the bus driver when he gets home. Sometimes I tell DD that she probably gets more practice dealing with an autistic child than the undergrad students. She thinks of getting into child psychology, hope she sticks to it.

As far as inclusion, it is my goal to have DS be mainstreamed too. He is in a 100% special ed school right now, I'm hoping that when he gets to 4th grade we can consider this.

You're very lucky that your employer is very supportive. I too have a family leave in place at work and my immediate Supervisors are very supportive as well.

Keep us posted Andrea. I'm really glad that we can all "talk" to one another here.
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Old 02-14-2011, 01:15 PM   #2205
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Happy Valentine's Day to everyone!!

DS helped me make cupcakes yesterday for his class party today. A year ago, he was afraid of the noise the hand mixer makes. I credit his speech therapist for helping him learn to like to "cook". It's one of their weekly activities; the kids work as a group and have to take turns with following the recipe. Nothing with the oven - just fun things that the kids get to eat when they're done.

Anyway....now I can't keep DS out of the kitchen He loves to come in and help me with things. And since I love to cook, I'm so grateful he is embracing the kitchen and all the noises that go along with it! He actually held the mixer yesterday and loved putting the sprinkles on the cupcakes. Hooray!!

I took DS to see "Gnomeo and Juliet" this weekend at our local theater who participates in the Autism Society's Sensory Showings of movies. They don't show previews, the lights stay on and the sound gets turned down a bit. Perfect!! You can bring in your own snacks and unless it's a safety issue, the kids are allowed to walk around, make noise and just be "kids". DS watched the whole movie - it's only the second time we've made it through a whole showing.

The special-needs trust seminar I attended last week was great. A very personable attorney presented lots of information to help people get started with the process. Very sobering and kind-of frightening!! I came home and told DH that we had to get everything in order and get ready to spend some money to make everything legal and correct. We were told that ballpark-figure for everything (wills, living trusts, advanced health directive, etc.) should run about $3K to $5K to put in order. Eeeekkk! But WAY more scary if you don't get things in order. Needless to say, I didn't sleep well that night!

We've gotten a list of attorneys who help with the trusts. NFAR has their local recommendations and also I got a list from our local Autism Society chapter. Two more names came from personal recommendations from friends. Now, we'll just get things put together on our end and then start meeting with the attorneys until we find the right one. The seminar stressed how important it is to work with an attorney who 1) knows what they're doing and 2) you like and feel comfortable with.

Our local Autism Society chapter is having a "Daddy and Me" outing this weekend at a bowling alley. I'm encouraging DH to go with DS; DH used to be in a bowling league. I want to DH to start taking a more active role in doing fun things with DS that are sponsored by the Autism Society. I'm hoping the "we're all in this together and we know how you feel" mentality will help DH. Up to now, I've been the one taking DS to events that are geared for autistic kids; Daddy needs to jump in too

That special needs seminar was held in a local library and the library had used books for sale. I picked up Jenny McCarthy's "Louder Than Words" book she wrote about her son being diagnosed with autism. I made it to page 18 and by then I had read the "f-bomb" word too many times. I threw the book in the recycle bin.........

*sigh*

How is everyone doing?
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Old 02-14-2011, 01:30 PM   #2206
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...That special needs seminar was held in a local library and the library had used books for sale. I picked up Jenny McCarthy's "Louder Than Words" book she wrote about her son being diagnosed with autism. I made it to page 18 and by then I had read the "f-bomb" word too many times. I threw the book in the recycle bin.........

*sigh*

How is everyone doing?
First of all, so glad your son is having fun in the kitchen! HUGE!!!!

Second, this made me LOL!
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Old 02-14-2011, 03:52 PM   #2207
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Susan - glad I could make you smile!

I always smile when my husband says "numbnuts" - thanks to you and Jack!
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Old 02-14-2011, 04:03 PM   #2208
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Susan - glad I could make you smile!

I always smile when my husband says "numbnuts" - thanks to you and Jack!
OMGosh!!!!! I'd forgotten that embarrassing moment! Ahhh, memories of Christmas Eve!
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Old 02-14-2011, 10:53 PM   #2209
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A late valentine greetings to all!

I've always wanted to bring DS to the movie theatre that is sponsored by either the school or an autism group exactly how you described it Lorraine. Would be interesting to see if he will stay for the whole movie. It's been a long time since the days when he was hypnotized by Barney.

Still waiting to do the 16-hr parent training, then the assessment, before having someone come over the house for his behavior intervention.

This month is just zooming by. Think there's rain coming our way again this week.... and next.
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Old 02-15-2011, 01:14 PM   #2210
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Tina - you're right....there's definitely rain coming your way and then it's coming down to San Diego. Today has been kind-of gray and the weather mouths are saying to expect rain tomorrow.

I hope you can find a theater near you that does the sensory screenings. It's so nice to take your kid somewhere where you don't have to keep "shushing" him and where no one cares when they hand flap or get excited.

Good luck with the training, assessment and behavior intervention! Keep us posted as to how things progress.

Susan - of course I couldn't forget a classic Christmas Eve memory
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Old 02-15-2011, 01:33 PM   #2211
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This has probably been mentioned before, just in case:

The guidance counselor at my school (where I teach, not where my son attends) gave me this info about AMC Theaters. They have sensory friendly viewings one Saturday a month (and they even allow you to bring your own food for that showing because they understand some children have restricted diets).

Here's the link AMC Theaters

Locations

I have not had a chance to attend one of these showings, but I hope to take Brendan to see Hop.
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Old 02-15-2011, 04:47 PM   #2212
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Thanks for the link Monica. Will definitely do it in the Spring.

Kudos to AMC for thinking of this. You're so right Lorraine, sometimes I am "tired" or maybe not in the mood to hush my DS when we're out and about, so long as it hasn't really gone out of hand, but others just find pleasure in putting you "on the spot" by staring at DS and then ME........and back and forth (heavy sigh).
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Old 02-16-2011, 12:32 PM   #2213
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Monica - thanks for posting the link. I'm sure every theater is different but the one we go to here in San Diego does a great job with the showings. There is usually someone from the local Autism Society standing at the entrance. They hand out literature and then hang out while the movie starts to make sure the lights and sound are good.

Tina - I totally understand what you mean! I try to stay patient with people that stare and judge but sometimes, if I'm not in the best of moods, I either want to tear their heads off or burst into tears......
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Old 02-27-2011, 08:25 AM   #2214
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Quick Question for all: Have any of you tried B-12 shots for your autistic son/daughter? We've tried the more traditional therapies for the past almost 2 years and are looking to try additional/more biomedical interventions (while keeping everything else we're doing, of course). The doctor we visited has been treating autistic children for the past 12 years and in his experience, he says that nearly 90% of parents see a marked improvement after a few months on these shots. Wondering if any of you have tried this and have had success/no success/or helpful advice.

Thanks in advance!
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Old 02-27-2011, 02:17 PM   #2215
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sorry, Andrea, but we haven't gone that road yet. Interested to see what responses you get!
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Old 02-28-2011, 11:02 AM   #2216
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We've never done the B-12 shots either.
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Old 02-28-2011, 05:50 PM   #2217
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We did the B-12 shots (Methylcobalamin) with our son back in 2004 (he was <3) we did twice a week for about six months. The only thing we ever saw was after about two weeks he made his first spontaneous in context utterance and first bit of spontaneous imitation, sorry don't know how else to say that. He went in the kitchen, put on my husbands shoes (looking very proud of himself) and when he tripped a little he caught himself an said 'uh-oh'. This just made me cry right there and then. We never saw anything else that dramatic over the next couple months but I think it did help him. I think maybe it helped him reach a little higher level for us to work with him but I can't be sure that's what it was. It was tough on him and me and a bit pricey as well as hard to find a compounding pharmacy with a 'clean room' to produce it. Would I do it again, hmmmm maybe, probably, not quite sure. I think applying priciples of ABA have made the most difference (along with a lot of silliness (: ). Hope that helps. Oh, btw, we're new here. We have one lovely, sweet, handsome, funny, smart little boy with autism and he is the light of our life. He was diagnosed with autism (between severe and moderate) when he was 3. We just started home schooling this year after major behavioral issues (and lack of progress) in the public schools. It has been challenging but he is doing well and much happier. My mother is an avid crafter and member here (graciecakes) and refered me to this forum.
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Old 03-01-2011, 07:04 AM   #2218
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Thank you for your response! This is exactly the kind of personal experience I was hoping to hear about. I totally agree with applying ABA principles and play therapy (your description of "silliness") - those two things have helped dramatically. I'm hoping to add more ABA this fall. The shots for us are not going to be that pricey - there is a wonderful compounding pharmacy just down the road from the Autism Center where my son goes 3-4 times a week, so that's great. And, 8 shots are $40.00.

Is your son verbal now? My son was diagnosed at 2 1/2 (although could've been at 18 months) . . . He's still non-verbal, still can't really follow one-step commands, and has severe sensory issues. Sounds bad, but he has made tremendous gains compared to where he was. That verbal piece along with general dis-regulation is just so difficult. But when he's happy, it is the greatest feeling in the world!!

Welcome to the discussions!
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Old 03-01-2011, 09:02 AM   #2219
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Thanks for the warm welcome. It seems there are many proactive and positive moms here and we are happy to be a part of it. I'm looking forward to finding the time to read previous postings and conversations. What a help having a background in education must be! I'm just fumbling through trying to figure out how to to keep it all organized (the materials and the time). In spite of my 'mess' of tubs of manipulatives and tons of flashcards (that's next to my mountain of homemade workbooks LOL) he is learning...really learning. I wish I had found the faith in myself two years ago when I felt that he was 'slipping' at school. When he was 3-5 yo in the PPCD program I still had him all but 2.5 hours a day and we did very well together. I was reluctant to send him full time to start K in a self contained classroom but there was such praise about the qualifications of the teacher. She was and is very knowledgeable and sweet but he just wasn't learning and I was tired of hearing who my sweet little boy hit that day (btw I believe that the function of the behavior was to punish the teachers). Soooooo I'm glad to hear that you have a teaching background, I may need to pick your brain on occasion .

I think the B-12 shots could possibly help. I try very hard to be keep my emotions in check and avoid the wishful thinking bias. That being said I think it would have been too much of a coincidence to see what we saw just weeks after starting. Like I said I think it did help and I do know that it didn't hurt (well except for the shot part ).

Your dedication to your son is obvious and you guys will get there but I know how you feel, I feel the same way all the time but like you I quickly remember where we started and how far he has come. Our boy is now verbal with about 50-100 mands and over 500 tacts and even some intraverbals but it isn't conversational yet. We are using the VB-MAPP to try to build those up as well as practicing the noun/verb combinations. I could go on and on lol. We still struggle with simple yes/no Q's though. His receptive/listener responding is better that his expressive/mand&tact but is very much delayed as well. He also has some serious sensory issues but mainly with food. Example: just a few years ago we couldn't even be near him when we ate because he would look at our plate and throw up! Yep just to look at it. He still has a very limited selection but we have him eating meat now (hamburgers since Nov 2009) YEA! We have had some success with desensitizing with other issues too. And yes, I agree, our boy is very passionate as well. Not many kids could make peoples jaws drop in the grocery store the way that he can when he is having a moment BUT no child has ever laughed harder or loved more deeply that him either. We love him, all of him, and just hope that we can give him everything he needs to have a happy, fullfilling life.
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Old 03-01-2011, 10:01 AM   #2220
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Welcome to the thread, gypsy1219! I too have a lot of catching up as far as reading the previous posts, and it's great that we're all sharing the same passion in papercrafting and the same love for our precious children.

How's everyone? Woohoo, it's March and can't wait for daylight savings time!!!! BTW, it rained "hail" last Saturday in our area and boy we were like kids.......would never have seen those in L.A.!

I did the first four hours of the 16-hr parent training for ABA and it's interesting how I was the only mom in the class and everyone else were therapists. Even though I've heard it before or have been doing it at home, it's always good to get a refresher so to speak. I'm also excited because the LA chapter of TACA moved its monthly meetings closer to my area and it's on a Sunday so I can join in.

DS will be watching Rango on Friday with his class and we'll see if we can watch Mars needs Moms on the 12th at a nearby AMC.

As far as biomedical intervention, I haven't done it yet. Thank you all for sharing your experiences.
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Old 03-01-2011, 10:05 AM   #2221
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And yes, I agree, our boy is very passionate as well. Not many kids could make peoples jaws drop in the grocery store the way that he can when he is having a moment BUT no child has ever laughed harder or loved more deeply that him either. We love him, all of him, and just hope that we can give him everything he needs to have a happy, fullfilling life.[/QUOTE]


Just wanted to say that I have three children and out of the three, DS with autism is the one who hugs me the most, contrary to what they say about kids with this dx.
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Old 03-01-2011, 12:01 PM   #2222
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Gypsy1219 - welcome to the thread!

Touching to read your story and hear about your son.

We too are going to try to catch the March 12th sensory movie "Mars Needs Moms". We made it all the way through "Gnomeo and Juliet" last month.

DH took DS to a bowling playdate with the local Autism Society "Daddy & Me" group last Saturday. They had a blast and it was good for DH to become involved in these types of activites. A few of the daddies asked DH to join their monthly "Daddy" support group meetings. Hopefully, he can make a few. The bowling alley provided lightweight bowling balls and had the bumpers up in each lane. Also, they didn't make the kids wear bowling shoes; just their regular shoes were OK. Nice!

We've joined an HFA-Aspie playgroup through Yahoo and look forward to making some new friends. The idea behind the group is to get kids 7 to 12 years of age together to help them with their social skills. Perfect!
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Old 03-01-2011, 12:29 PM   #2223
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That's funny about the ABA training, I've been one of few if not the only parent in many seminars and coferences. I've logged around 340-350 hours over the past 6+ years and still have plenty to learn. Once you get past the ABA 101 and the 'What is Autism' levels the parents really start to thin down. I've even had a few looks from BCBA's in training like I couldn't possibly be understanding this or be interpreting it correctly. HA, if one person can do it, so can another. ABA always comes down to motivation and who has more motivation than a mother trying to save her child's future....nobody. It's nice to hear about other parents doing for their children and really involved in the process. And you are so right about the refresher course. Some speakers I could listen to 10 times over and probably still walk away with something totally new each time. I was fortunate enough to have been able to attend Dr. Sundberg (for the second time) back in January. He is so generous with his 25+ years experience, I just couldn't listen hard enough . I would also love to see the Koegel's (PRT) again as well as Gail McGee (Incidental Teaching). If you ever get a chance they are just wonderful speakers and very entertaining as well.

smhtwin-thanks so much. We too just went to our first bowling playdate(Bday party). They made the kiddos wear the shoes but not the adults that had to help the kids. They had the bumber guards up and also had a ramp that the kids could place the ball on top of and then let roll down, it was so cute! We will be doing that again soon. I also just heard about how they can lock the wheels at the rollerskating rink. Has anyone done this with their kids yet?
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Old 03-14-2011, 08:41 PM   #2224
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Hi, I'm Catherine and I have a Special Needs Child, we got him tested for Autism and they said No, he doesn't have Autism or on the Autism Spectrum. However, he does have Sensory Processing Disorder, Developmental Delay, Language Delay, Fine Motor Delay and has ADHD. I'm involved with 2 meetup groups for kids with Autism or on the spectrum/Special Needs Kids, locally here in Texas. I feel more comfortable talking to Moms who have children with Special Needs, cause they can understand more about my child's struggles.

My child is very sensitive to touch, loud sounds, eats fast and "stuffs" his mouth with food. We've gone over and over how to eat properly by taking small bites and he does every once in a while. I'm not a Dr. however, I have done a lot of research from reading and family type research by talking with family members, hearing stories of other family members (on my Husband's side of the family). I think it is genetic or hereditary that my Son has these issues. There are several other members of the family who have sensitivities to sound and touch. My Husband says he has "Auditory Aphasia", however that is an older term when he was in school. Now, the term I am hearing is Central Auditory Processing Disorder and he has that, my Husband. My child can't get tested till he is 6 or 7 years old. I'm predicting that my Son will have CAPD also, like my Husband.

Is anyone else familiar with Central Auditory Processing Disorder? I'm glad that we can be sharing our stories, struggles, worries, accomplishments,etc.. that are from a Mom's point of view! We can all learn from each other and help each other on this difficult road of parenting a child with special needs.

My child is in preschool at our church. I tried advocating for his needs and what I wanted for him. He goes to a private church preschool. Overall it is good, my Son is in a small class of 14 kids. We are looking into a private school, called the Child Study Center. We are on the referral list and waiting to hear back if he gets accepted there. Public schools aren't so good here in county we live in.

I'm married and I have one Son, who is 5 years old. We have a dog, Border Collie/Lab mix and she is 13 years old. I love scrapbooking, crafts, reading, traveling, singing, watching movies, animals.
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Old 03-14-2011, 09:02 PM   #2225
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Happy Valentine's Day to everyone!!

DS helped me make cupcakes yesterday for his class party today. A year ago, he was afraid of the noise the hand mixer makes. I credit his speech therapist for helping him learn to like to "cook". It's one of their weekly activities; the kids work as a group and have to take turns with following the recipe. Nothing with the oven - just fun things that the kids get to eat when they're done.

Anyway....now I can't keep DS out of the kitchen He loves to come in and help me with things. And since I love to cook, I'm so grateful he is embracing the kitchen and all the noises that go along with it! He actually held the mixer yesterday and loved putting the sprinkles on the cupcakes. Hooray!!

I took DS to see "Gnomeo and Juliet" this weekend at our local theater who participates in the Autism Society's Sensory Showings of movies. They don't show previews, the lights stay on and the sound gets turned down a bit. Perfect!! You can bring in your own snacks and unless it's a safety issue, the kids are allowed to walk around, make noise and just be "kids". DS watched the whole movie - it's only the second time we've made it through a whole showing.

The special-needs trust seminar I attended last week was great. A very personable attorney presented lots of information to help people get started with the process. Very sobering and kind-of frightening!! I came home and told DH that we had to get everything in order and get ready to spend some money to make everything legal and correct. We were told that ballpark-figure for everything (wills, living trusts, advanced health directive, etc.) should run about $3K to $5K to put in order. Eeeekkk! But WAY more scary if you don't get things in order. Needless to say, I didn't sleep well that night!

We've gotten a list of attorneys who help with the trusts. NFAR has their local recommendations and also I got a list from our local Autism Society chapter. Two more names came from personal recommendations from friends. Now, we'll just get things put together on our end and then start meeting with the attorneys until we find the right one. The seminar stressed how important it is to work with an attorney who 1) knows what they're doing and 2) you like and feel comfortable with.

Our local Autism Society chapter is having a "Daddy and Me" outing this weekend at a bowling alley. I'm encouraging DH to go with DS; DH used to be in a bowling league. I want to DH to start taking a more active role in doing fun things with DS that are sponsored by the Autism Society. I'm hoping the "we're all in this together and we know how you feel" mentality will help DH. Up to now, I've been the one taking DS to events that are geared for autistic kids; Daddy needs to jump in too

That special needs seminar was held in a local library and the library had used books for sale. I picked up Jenny McCarthy's "Louder Than Words" book she wrote about her son being diagnosed with autism. I made it to page 18 and by then I had read the "f-bomb" word too many times. I threw the book in the recycle bin.........

*sigh*

How is everyone doing?

I use to be a Pre-Paid Legal Sales Representative. We still have our membership and also for Identity Theft protection as well. I highly recommend it. It isn't for everyone, however if you use the service, you'll see the difference and the benefits of having the membership. It is offered in all states, however you do need to buy it from a sales representative in your state. I live in Texas, so I know people here in TX that I can refer you to. A lot of representatives can sell policies to other people in other states, they have to have a license in that state. If you would like me to refer you to someone, I'll be glad to do that, just let me know.

Basically, it is a monthly membership fee that you pay for legal services. You can call the attorney as many times as you want. You have a local office, that has many different attorneys there. If they don't have the right type of attorney (or specialist) they can refer you out to an attorney. I've only been referred out to an attorney, 2 times over the past 5 years. I've called them a lot. With your membership, you get your wills, power of attorney, medical directives, free phone calls to ask for legal advice or legal questions/concerns.... If there is ever an emergency (child abuse, major accident or some other major emergency where you need an attorney at 10 p.m. at night or on the weekend) you have coverage and can speak to an atty on the weekend or any time of the night/day, which is comforting. I've been through a major accident and this was before Pre-Paid Legal. I had to hire an atty (it was a 5 car accident), it took 5 years to settle the case. I was the middle person and I got hit from behind by 2 people and had 2 cars in front of me. It wasn't my fault either. I got settlements from my insurance company and another insurance company, however it took a long time. I had to go thru 2 depositions also. As far as phone calls go in dealing with my attorney at that time, I always talked to a Secretary or a Legal Assistant, never my real Attorney. Sometimes, the staff would take a few days to get back with me also. Well, with PPL services, you get to talk to an attorney, not a paralegal or a legal assistant or Secretary. Also, you get a quick phone call back from the atty (I've had phone calls returned 5 minutes later, sometimes 3-4 hours later and sometimes first thing the next morning). It is definitely better than hiring your own attorney, in my opinion. If you can afford it, I would highly recommend it if you are hiring an atty. You also have coverage and connections to law firms in every state in the U.S. So, if you travel and getting a speeding ticket or are involved in an accident or there's an injury, you just call PPL and they give you the number to the law firm in that state. We've been victims of Identity Theft and I love the Identity Theft protection as well. I saw you were getting a Trust type legal document done, so you may want to consider this service. Redoing your will is free each year, so when you need to make changes to your will, that doesn't cost anything extra, or at least it hasn't for us. That covers both me and my Husband and our child. Check out pre paid legal on the internet. Let me know if you have any questions, hope this helps you!
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Old 03-15-2011, 05:50 AM   #2226
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Is anyone else familiar with Central Auditory Processing Disorder?
Hi Catherine, I'm Catherine. LOL!

My older son has CAP, anxiety, ADHD and learning disorders. My other son is on the autism spectrum. Frankly, I think they both have the same things going on, but to more or lesser degrees and so that is why they have different diagnoses.

I am VERY familiar with CAP since I tested both of my kids with the full blown tests. Although formal testing and diagnosis by an audiologist can't take place until a child is older than 7, there are still tests that can be done to head in that direction. We found a neuro-psychologist who tested my son at 5 and so we knew we were going that way. Please be careful finding a neuro-psych. Apparently there are a lot of quacks out there who only get certificates, but there are others who do their dissertations and earn their doctorates so just do your research on their backgrounds. This is not a psychologist who does talk therapy. This is a psychologist who plays games with the child and does formal tests.

A great resource is The Late Talker:What to do When your Child isn't Talking by Marilyn Agin. This book was very practical and got me started on Omega3's. There are great letters in the back for schools and insurance companies too.

I admire you so much for still "hanging out" with those of us with children on the autism spectrum. Even though your son's formal diagnosis is not autism, you are wise to absorb as much information from this community as possible as a lot of the symptoms and manifestations of these developmental disorders are the same.

I encourage you to also look into alternative treatments for your son such as diet, supplements and the like. The GFCF diet and supplements for my son on the spectrum stopped his stimming and increased his eye contact. And dare I say that we are about to get a new diagnosis that he may be off the spectrum after all these years. He's still got issues for sure, but I never thought we'd be where we are today.

If you want to private message me about it, my email is muffincards at yahoo dot com. I have a lot more info I can send you on stuff in general.

It sounds like you are on the right track! All my best to you!!!!
Catherine
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Old 03-15-2011, 03:14 PM   #2227
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A very warm welcome to Catherine (Richsmom) and Catherine (muffincards)!!!!!!!! So glad you can join us here.
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Old 03-17-2011, 01:52 PM   #2228
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Welcome to both Catherines!

Richsmom - thanks for all the legal service info.
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Old 03-17-2011, 05:25 PM   #2229
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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.

We had a lot of difficulty when my Son was 1, 2 and 3. At three years old, I got this idea of us setting up a "tour of dentist office". I asked the staff if it is okay for us to come and just watch and look at the patients and what the Dentist was doing and the other staff,etc... They were fine with that. We didn't have an appt with the Dentist. My child is an "observer" first and then after he watches what is going on then he will do whatever you are wanting him to do. He hated having us brush his teeth and the Dentist touch his mouth and teeth when he was a baby. He got to see other patients (other kids- cause it is a Pediatric Dentist) and they weren't crying and were laying back in the chair getting worked on. He saw what the Dentist was doing,etc.. Well, the next visit we had went wonderful. We also checked out books on going to the dentist and I had read them to him also. He hopped up in the chair all by himself without any assistance from me. Let them take X-Rays and Dentist was able to look at his teeth without a fuss! I was amazed that the tour and the observing of what went on at the Dentist helped so much and the books also! Maybe something you all want to try with your kiddos, if they difficulty with the dentist. Our Dentist also has the gloves that smell like grape, orange, cherry, apples- Rich loves these! He always wants a pair of the gloves to take home with him, so he can use them at home. One trick the Dentist told us is that if your child lays down on the floor, it is much easier to brush his teeth (if he is wiggly or not wanting to cooperate,etc.. It use to take 2 of us to brush our child's teeth, now he will do it himself and we just come behind him and brush more after he is done. Good Luck!
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Old 03-22-2011, 04:34 PM   #2230
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I haven't posted in a long time but just have to vent and I know this would be a place that would understand.

I was diagnosed with Fibromyalgia about 1.5 yrs ago. My Rheumatologist retired right before Christmas so today I had an appointment with my new doctor. She was asking me about any stress in my life and I explained to her that I have a 9 yr old son with autism (aspergers)/traumatic brain injury who needs constant supervision because he is a self-abuser (he head bangs against things and punches himself when frustrated) and can be destructive to things around him too. She said that I will not feel any better unless I can get more sleep. I explained to her that I cannot even take my medication until I know he is fast asleep. So sometimes it is 1 a.m. before I get to sleep. I have learned to live like this and I was not complaining just informing her. She then strongly suggested that I consider having him put in an institution. She said my health will not improve unless I rid myself of my stress issue which looks like it is your son. I was soooo angry!!! I can deal with the pain, fatigue and my child. I told her that was not an option and that God gives me the strength to deal with what is placed before me. To which she smiled and shook her head. She also said that she has never heard of a autistic child who is destructive or who may harm himself in frustration. I guess I am looking for a new doctor because my son is not going anywhere away from me!
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Old 03-22-2011, 05:19 PM   #2231
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Oh Debbi, I am AMAZED at how insensitive this doctor is. I don't know how ANYONE can look a mother in the face and say, "I strongly suggest you institutionalize your son." As far as her comment, "I've never heard of an autistic child who is destructive from frustration," really makes me question where she went to medical school and WHY is she practicing?

I am so sorry you had this HORRIBLE experience. I wish I new a good doctor I could recommend for you. I do admire your self-control for not decking her.
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Old 03-22-2011, 06:15 PM   #2232
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I agree that Dr. was very insensitive in making those remarks. I've heard of many kids with Autism that have tendency to self-harm themselves. Seems like the Dr. isn't up on the research or what is going with Autism currently. Yes, I agree I would look for another Dr. Maybe a friend or someone could give you a recommendation for an experienced Dr. who specializes in helping children with special needs/Autism. Maybe you have a friend who has a child with Autism? We are in TX, not sure where you are. I'll be glad to help out for a Dr. in the DFW area. We see a Developmental Pediatrician and our Dr. is great at the Child Study Center. You might want to check into a Developmental Pediatrician, they specialize in kids with developmental issues and other behavior issues and diagnosis children and doing testing and can prescribe medication if needed. Good Luck and I'm sorry you had to go thru that. Take care and God Bless!
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Old 03-23-2011, 08:20 AM   #2233
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Monica-I am still so upset this morning. I was up until about 3 this morning replaying it in my head with the things I wish I would have said (like asking her if she had children) or done (I should have just gotten up and waked out). My 8 yr old DD was in the room with me and she heard every word and was just shocked. I think those of us who have special needs children have more patience and that is why I let it slide right then and there. We have learned that we need to do what it takes to get through a situation and deal with the outcome later if we can.

My father wants me to contact a supervisor and inform them of the things that were said to me. The doctor I had, had been practicing for over 40 years and was thoughtful and listened. This young lady (I just look and she did not even go to a medical school in the states) even told me that Fibermyalgia just meant that I had an extremely low pain tolerance and could not deal with pain as other people can...so wrong! My SIL is a Doctor in the same medical system that we use. I will see her this weekend. I plan on asking her opinion on a referral to a new doctor for me.


Richsmom- My son has a WONDERFUL doctor who is great with him (and me). This was a new doctor for my condition.
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Old 03-23-2011, 10:57 AM   #2234
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Welcome back Debbi! Glad that you posted here and hoping that venting here would make you feel a little bit better. What an insensitive doctor, I highly recommend that you find a new one because if it were me, seeing this MD would bring back this nightmare over and over.

I am shocked that people in this day and age would still think that being institutionalized is still an option. I am in awe!!!!!!!!!

Stay strong........for you and your kids. Your son is lucky to have you and you will be his rock!
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Old 03-23-2011, 04:03 PM   #2235
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I haven't posted in a long time but just have to vent and I know this would be a place that would understand.

I was diagnosed with Fibromyalgia about 1.5 yrs ago. My Rheumatologist retired right before Christmas so today I had an appointment with my new doctor. She was asking me about any stress in my life and I explained to her that I have a 9 yr old son with autism (aspergers)/traumatic brain injury who needs constant supervision because he is a self-abuser (he head bangs against things and punches himself when frustrated) and can be destructive to things around him too. She said that I will not feel any better unless I can get more sleep. I explained to her that I cannot even take my medication until I know he is fast asleep. So sometimes it is 1 a.m. before I get to sleep. I have learned to live like this and I was not complaining just informing her. She then strongly suggested that I consider having him put in an institution. She said my health will not improve unless I rid myself of my stress issue which looks like it is your son. I was soooo angry!!! I can deal with the pain, fatigue and my child. I told her that was not an option and that God gives me the strength to deal with what is placed before me. To which she smiled and shook her head. She also said that she has never heard of a autistic child who is destructive or who may harm himself in frustration. I guess I am looking for a new doctor because my son is not going anywhere away from me!
I'm sorry for your experience... a similar thing happened to me too recently and I just sat there... sounds like this doctor doesn't know a whole lot about anything - I think your dad is right - let someone know what a jerk she was...
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Old 03-25-2011, 02:26 PM   #2236
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Debbi - you're smart to find a new doctor and yes, I would report her behavior to the appropriate people. She needs to be held accountable for her unprofessional comments.....

Hugs to you and your family!
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Old 03-28-2011, 02:41 PM   #2237
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Thank you all for the wonderful support. It means sooo much!!! I just sent an e-mail to the patient feedback, now it is in their hands.
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Old 03-29-2011, 02:23 PM   #2238
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Debbi - good for you!!
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Old 04-01-2011, 02:27 PM   #2239
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April is Autism Awareness Month

Support Educate Advocate

Hugs to all the other mommies on this thread and hugs to all of our special kiddos
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Old 04-01-2011, 02:41 PM   #2240
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Toys R Us is taking donations for autism. I got a really cool tote bag for a donation. The clerk said, "My friend and her son thank you." I said, "My son thanks you and Toys R Us for this." "Very cool," she said.

I love that attitude. So much healthier and understanding than an "I'm so sorry for you" could ever be!
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