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#1 of 11 Old 08-22-2012, 10:34 PM - Thread Starter
 
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Hey mamas,

As some of you may remember, my sweet boy was diagnosed ASD this April. We have since moved our entire family across Canada to access better services for him, leaving our lovely acreage behind for a house in a suburb of a major city so we could try to help our son while time is on our side. He just turned 3 on July 26 and is all set up to start preschool on Sept 4, and an additional ~30 hours of pivotal response training (a type of ABA) per week in our home by the end of September.

So WHY am I so apprehensive? The school is amazing, it's a classroom of 6 special needs kids and 8 NT kids with a teacher, 3 behavioral aides, in-house SLP. OT and PT. it's for 2.75 hours, 4 days a week. Sounds perfect. But I have made sure to arrange our lives so that all our kids have had a SAHP until kindergarten up to this point. I feel like I'm sending my poor unsuspecting baby out into the wild and I have no idea what will happen to him. I know some kids with ASD are fairly easy with other caregivers and don't act attached to their parents specifically... but not DS. He is extremely clingy, uses my dh or I for comfort and reassurance in new situations, is always looking to make sure we're still there. If anyone he doesn't know tries to feed him, change him, redirect him, he *freaks* and is difficult to calm after. I worry he'll think we abandoned him when we're not there if he's upset. greensad.gif He hasn't had even casual babysitters til now.

I'm also concerned because his main stim involves his penis. He is constantly stretching out and rolling back his foreskin, sticks objects in there (just last week he rolled his foreskin over a penny)! He pulls his penis out of the leg of his diaper and pees on his clothes if not watched every second. If we are going somewhere in the car or trying to do housework etc. we actually have to tape the legs and waist of his pants so he can't get his hands in there. He would play with his penis from waking until sleeping all day if allowed. Will the preschool be able to handle this with 14 kids in the class?! I worry about this a lot too. greensad.gif

I worry that they won't respect our dietary restrictions for ds either, since they're not true allergies but more like sensitivities or even preferences based on how we've see him react to certain foods. I know a lot of people, especially in the mainstream autism treatment community think that biomedical interventions or diet modifications are hogwash and I worry they will give him treats on special occasions etc without permission.

Anyhow, sorry to bombard you all with my panic state and very specific concerns, but I figured if anyone understood, it would be you all. If anyone has BTDT and can share their experiences, please do. Losing sleep over this one.

Peaceful mama to three blissfully-birthed and incredible small people: dd10, dd7 and ds5. Always awed and so thankful to be a midwife.
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#2 of 11 Old 08-23-2012, 08:13 AM
 
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Hello. I don't really have any specific helpful advice, but I wanted you to know I totally get your fears. My YoungSon was much like your boy when he started school. He had NEVER been with a babysitter, and I expected him to totally freak when I left him at preschool. We had a couple rough days, but he quickly acclimated. I know it was a huge help that his one year older sister was there with him, but surprisingly, he did not go to her much. He even potty trained himself there within a couple weeks, to avoid letting a "stranger" change him, I think. For us, it worked out better than I could have expected. He was gently encouraged to interact with the other kids, but allowed to be mostly alone, his preference. FWIW, YoungSon, at 16, is still pretty clingy, but he handles it well, with grace and maturity. Well, usually.eyesroll.gif

 

I hope you have talked with the staff about the penis/stimming thing. I would expect them to try to stop him, and I hope they could do that without shaming him. Can you directly ask how they would plan to deal with it? I would vote for the teachers ignoring it, but it is hard to predict other kids' responses. How about overalls to keep him from reaching in? Come to think of it, I am sure you have tried that.

 

I have to run, but I wanted you to know that I understand how hard it is to send some kids out into the world. Remember that this isn't absolute. If it really doesn't work over time, you could pull him out for now and try again next year.

 

Best wishes,

 

Rhu
 


Rhu - mother,grandmother,daughter,sister,friend-foster,adoptive,and biological;not necessarily in that order. Some of it's magic, some of it's tragic, but I had a good life all the way (Jimmy Buffet)

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#3 of 11 Old 08-25-2012, 09:13 AM - Thread Starter
 
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Thanks, Rhu. I really do appreciate the commiseration. This has been so hard for me. I think the most difficult thing is that this all goes so far against how I intuitively parent. I tended to let my girls guide their own interests/learning with a little gentle encouragement, and they thrived. If I took this approach with ds, he would likely never learn anything at all (exaggeration, of course, but that's what it feels like sometimes). greensad.gif This whole forced independence, drill-style learning, needing to communicate verbally with him in such an artificially animated and simple way for him to pay attention... well, it sucks.

As for the penis thing, I wish overalls worked! Bought three cute pairs last season, and no go. Even full length footed pajamas don't deter him a lot of the time. I did have a long discussion with the preschool teacher yesterday about it and how important it is to not make a big deal about it, negative feelings surrounding it etc. What I usually do is just tuck it back in without saying anything and try to redirect him. Unfortunately ignoring it all together doesn't work because then he pees all over the place multiple times a day.

I'm going to try my best to work this out. It's going to be a challenge to differentiate between my actual intuition of something truly being wrong vs. my overprotective mama bear side. I know it won't be all sunshine and lollipops but I'm hopeful it will get easier over time. This is a good way for him to receive speech, OT and PT without me having to pay out of pocket. I would only have to pay for the SI specific OT, which would give us so much more breathing room. He would also get to be around his peers (NT and not) and I will get a small break on weekdays as well.

Anyone else have thoughts or experiences to share?

Peaceful mama to three blissfully-birthed and incredible small people: dd10, dd7 and ds5. Always awed and so thankful to be a midwife.
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#4 of 11 Old 08-25-2012, 10:44 AM
 
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My son (ASD, 2.5) has been in daycare from 4 months old because I work full time, so I can't speak to the separation issue except to say hugs to you both! But I do want to say how unbelievably helpful I believe it has been for my son to spend so much time with his peers. Every child is different of course, but it really feels like my guy has learned things no therapist or parent could have taught him just from being around them in both structured and unstructured activities, observing, engaging, responding, and being responded to by his peers.

 

Wishing you the best. Keep us posted!

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#5 of 11 Old 08-27-2012, 03:16 PM - Thread Starter
 
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Thanks for the support. I have noticed these past few weeks ds is starting to at least watch/observe what other kids are doing (as opposed to being completely oblivious to them) so maybe that will help with modelling some good behaviours from the NT kids. I knew that was their goal with the integrated program and when I first read it I just laughed to myself since I thought "uhh… don't they have to be AWARE that there are other kids in the room for that to happen"? 

 

We met the preschool coordinator today and got the parent handbook, seems like they have their stuff together. They do a music class along with individual music therapy, gym/sensory activities each day and even swimming classes. They were also seemingly understanding and respectful of ds' dietary concerns. Friday we go for the tour of the actual preschool, so hopefully that goes well!

 

I just get so sad thinking of leaving him there. I know the first time he will be naive and probably fine, but the next day when we pull in the parking lot, I'm sure he will start crying/screaming and that will be so hard. I have a feeling he will really enjoy it eventually since he's pretty happy to play and explore and not too wary of others, but it will be a curve that's for sure.

 

Again thanks for the replies! innocent.gif


Peaceful mama to three blissfully-birthed and incredible small people: dd10, dd7 and ds5. Always awed and so thankful to be a midwife.
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#6 of 11 Old 08-28-2012, 04:05 PM
 
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My 3 year old is ASD and he just started preschool. I've been on pins and needles expecting a call saying he is biting or a report that he paced in circles for hours or he refused to stop playing with a truck for 6 hours,. Behaviors that we deal with daily. Instead of I get a report of another child. And I do mean another child, to the point where DH actually asked if they were sure they knew what DS1 looked like. orngtongue.gif He even took a NAP today there, a nap, when we can only get the kid to sleep at night with melatonin. And he plays with other children. Without biting. He can't even play with us at home without biting. And he eats there. He doesn't eat at home. I am not entirely sure where this other child came from but it sure was not what I thought would happen. 


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#7 of 11 Old 08-28-2012, 04:46 PM
 
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Quote:
Originally Posted by blissful_maia View Post

I think the most difficult thing is that this all goes so far against how I intuitively parent. I tended to let my girls guide their own interests/learning with a little gentle encouragement, and they thrived. If I took this approach with ds, he would likely never learn anything at all (exaggeration, of course, but that's what it feels like sometimes). greensad.gif This whole forced independence, drill-style learning, needing to communicate verbally with him in such an artificially animated and simple way for him to pay attention... well, it sucks.

 

This really resonates with me. My ASD dd is now 15 and doing well, but when I went through the process of realizing that everything that I believed about how to best raise a child wasn't true about the the particular child I had in front of me, it was heartbreaking. I'd read all the right books and was willing and committed to doing all the right things, but it turned out that what I thought were the right things for a standard issue kid didn't really conform to what my sweet baby needed.

 

School was very difficult for my DD at first, but she is absolutely THRIVING now because of her teachers and experiences. She was sad when her school ended last spring and excited and happy to go back this week. And the added bonus is that I'm fresh when she is out of school instead of constantly being overwhelmed and exhausted. I'm a better parent with my kids in school.

 

Good luck.


but everything has pros and cons  shrug.gif

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#8 of 11 Old 08-30-2012, 01:37 PM - Thread Starter
 
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Quote:
Originally Posted by Peony View Post

My 3 year old is ASD and he just started preschool. I've been on pins and needles expecting a call saying he is biting or a report that he paced in circles for hours or he refused to stop playing with a truck for 6 hours,. Behaviors that we deal with daily. Instead of I get a report of another child. And I do mean another child, to the point where DH actually asked if they were sure they knew what DS1 looked like. orngtongue.gif He even took a NAP today there, a nap, when we can only get the kid to sleep at night with melatonin. And he plays with other children. Without biting. He can't even play with us at home without biting. And he eats there. He doesn't eat at home. I am not entirely sure where this other child came from but it sure was not what I thought would happen. 

 

That's great to hear! I'm hoping to have a similar story… he seems to do well around other people more so that when it's just the 5 of us at home. I don't know if it's just the increased stimulation or novelty or what, but I have high hopes for this working out after the initial adjustment phase.

 

Quote:
Originally Posted by Linda on the move View Post

 

This really resonates with me. My ASD dd is now 15 and doing well, but when I went through the process of realizing that everything that I believed about how to best raise a child wasn't true about the the particular child I had in front of me, it was heartbreaking. I'd read all the right books and was willing and committed to doing all the right things, but it turned out that what I thought were the right things for a standard issue kid didn't really conform to what my sweet baby needed.

 

School was very difficult for my DD at first, but she is absolutely THRIVING now because of her teachers and experiences. She was sad when her school ended last spring and excited and happy to go back this week. And the added bonus is that I'm fresh when she is out of school instead of constantly being overwhelmed and exhausted. I'm a better parent with my kids in school.

 

Good luck.

 

Glad to hear that someone else has been in the same boat. I've had that exact same moment, looking at the book, looking at my sleeping boy beside me and just mourning the loss of the type of relationship I had planned/wanted to have with him. But I suppose part of being a good parent is meeting him where he needs to be met, and letting go of my ideals so that he can learn. Sigh. I can't imagine that ds will be 15 some day!!! Those 12 years will hopefully show lots of improvements and regulations for him. 


Peaceful mama to three blissfully-birthed and incredible small people: dd10, dd7 and ds5. Always awed and so thankful to be a midwife.
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#9 of 11 Old 08-30-2012, 07:37 PM
 
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One of the reasons I choose to remain active here on Mothering is because of the special needs board. I want to encourage moms of younger kids. My DD is different than most teens, but she is a great kid. She is talking college prep classes. She does community service. We are currently figuring out if she can learn to drive. She has a friend (just one) and they are going to go see a movie on Saturday. Last year, she had her first sleep over. She likes to garden and read.

 

Your son will be a very different kid when he is 15. I wish you could visit my DD's school and meet some of the teens there on the spectrum.

 

Raising a kid with autism is tough, and at times heartbreaking. But it's there is so much hope, and really wonderful moments along the way. Try to find a way to enjoy something about where your son is right now. Do something that is fun for him over the weekend. Take some photos. This time is fleeting. Kids with autism may grow up slower than other children, but they still grow up!
 


but everything has pros and cons  shrug.gif

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#10 of 11 Old 09-03-2012, 12:16 PM - Thread Starter
 
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Thanks again so much, Linda. It is so encouraging to read that post! To be honest, the comment about your dd enjoying reading and gardening was really helpful, because I realistically don't mind if ds has to stay living with us etc. as long as he is happy with his day-to-day. In this current stage of endless stimming, can't sit still, essentially non-verbal it's hard to imagine him reading a book.

I took your other piece of advice to heart and have been trying to appreciate my moments with ds a little more, as he truly is a joy when I'm not so caught up in the fluster of our routine. I need to remember that this is his childhood, and not just a race to get him "better".

smile.gif


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Peaceful mama to three blissfully-birthed and incredible small people: dd10, dd7 and ds5. Always awed and so thankful to be a midwife.
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#11 of 11 Old 10-16-2012, 12:16 PM
 
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I know this an older thread, but I would love to know how your ds is doing in school?

 

Your worries reminded me so much of our expereince. Ds2, Fragile X, autism & ADHD, started preschool Sept 2011, and I was worried about how he'd do. We started out with 1 hour a day, and he cried that whole time the first week :(  The following week I sat in a corner of the classroom, letting his pera interact with him, and when he quieted down, I slipped out. While he did start crying again, he calmed down neough to stay a full hour while happy - which was our goal. It took 2 weeks of this for him to only cry for 5-10 mins, and be able to stay the full morning, however it took about 2 months for him to not be crying on the way to school.

 

He just started his 2nd yr at the same pre-scool, with the same teacher but different kids and he is super excited getting ready in the morning, signing ' teacher Lisa,' 'school,' and 'bikes' over and over and over :)

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