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Everything posted by specialmama

  1. DISCLAIMER: I argued with myself about keeping all but the final 2 paragraphs, as the beginning, IMO, does not apply to the OP. I decided to leave it because it may help someone somewhere down the line who searches for a sleep thread. Please don't flame me, I'm simply sharing my experience and my opinion, and my utter satisfaction that I chose to do things this way. My son only needs 2 hours of sleep, but his is a different situation, assuming your dd's issues stem from her experience in China and not autism. Let me share with you what we did with our kids, and why I'm glad we did it, but there is a HUGE difference in our children, so most of what I have to say likely doesn't apply to your dd... but please read the end for a tip that might just work. When my children were old enough to not need to be fed in the middle of the night, I refused to go to them. If they were sick or I could tell something was wrong with their cries, then of course I would go. But if there was no need, then I didn't go. I am so glad I did that, because lo and behold, my son ended up having autism. Somewhere along the line (from folks I've talked to, it's assumed between 11 mths and 18 mths) kids with autism get stuck where they're at or they regress in all kinds of ways. My son lost a few foods he was eating around 14 mths of age, but still at age 11 eats like that toddler: sliced bananas mixed with applesauce every night. Anyhow, if well-meaning moms run into their babe's rooms every night and then that sweet child ends up being dx'd with autism down the line: you can almost guarantee that that child will be stuck in that pattern of having mama come in every single night. Because their brains literally are wired differently (true of FASD and children with PTST as well as ASD et al) they sometimes truly only need 2 hours of sleep a night and they function fine. Their parents, however, can clinically go insane with years of unrest and interrupted REM. I know a mom with a 14 yr old boy who has autism who has to rock her boy to sleep for 4 HOURS before he'll settle. This poor mom can't go on vacation, can't have a sitter, therefore can't have a date with dad without a complete melt-down and shut-down which lasts for days. I know another mom with 2 boys on the spectrum who is awake all night long because her teen boys can't sleep. They can't be left alone as they wander the house with full reign, so she must stay awake to ensure their safety. This happens a few times a week and has been like this for 17 years. This mom is 40 and looks like she's 70. I feel so awful for her! I say all this just to reiterate that I'm a huge advocate of leaving babes at night if there is no need... I'm thankful that my son is safe in his room (it is impeccably safe!) and sings songs all night long instead of crying for us, waiting for us to come. Our entire family is rested and sane because we can sleep right through his looooong awake time. I feel for the dozens of parents in my special needs circles who have to get up all hours because their children are simply used to it. THAT SAID, I do realize your dd is adopted and has trauma of her own she can barely process. So I'm willing to bet that hers is a need. I've done a lot of research on orphanage adoptions and had adoption training, and it sounds like your dd is just struggling with her unmet needs of the past. I'm sure you're familiar with RAD, so I'd suggest seeking an attachment therapist in your area and plug away heavily at this while she's still so young. I'd back up the developmental train and treat her like a newborn... meet all those needs that were never met properly in the love she deserves. I would swaddle her tightly and have a nightlight on and maybe a music box to wind up. Speak softly to her, assuring her that "mama's here". Many attachment therapists will take even a teen back to the infant age of not just swaddling and cuddling, but reading to and drinking warm milk from bottles. Mom speaks softly with loving eye contact and simply says things like "this is what mamas do. Mamas love their babies. I love you." They slowly progress and the goal is to have them believe (I mean, really believe) that they can trust you. The hardwiring is difficult to change, but not impossible. You have my complete sympathy. Please continue to take care of yourself too. This is hard on you and your marriage and respite cannot be undervalued. Take a break before you think you need it, and keep maintaining those breaks. You can't afford NOT to. If the pot has run dry, then a bath won't fix it, but a weekend away might. The trick is to stay on top of your rest so that you can be the mama you're supposed to be. Call in all the supports you can, hire if you must, and take care of you. They'll all thank you in one way or another. (((hugs)))
  2. Thank you, Caroline! We're really on the ball with sensory stuff here, even have a full sensory/snoezelen room he can escape to... but a swing is really sounding appealing! I would love one of those specialty frames for in the house so I didn't have to damage my ceiling! They're so much money though, ugh! Thank you for this, Debbie. I read your response this morning but I was volunteering at a place where I couldn't respond... so all day I've been thinking about what you said. You are correct, might as well keep the schedule if he's used to it. I hadn't thought of it that way. He is used to being at school all day, and I may as well make a routine that we can both live with and tweak as we need. I appreciate too, your insight about changing locations to reset focus. Lack of focus has always been his biggest roadblock, so I do appreciate adding this to my toolbox of ammunition! Your platform swing, was it in your house? We're in Edmonton where we're lucky if we have 5 months of nice outside time. When half the school year is too frigid to swing outside, we really need to be looking at an indoor swing. I mentioned above about this, but I'm stuck on the ceiling issue vs. cost of indoor support system. Arg. That frustration of 2 steps forward 1 step back is what I'm dreading most. I know it's going to happen, it's happened repeatedly throughout his life across most skill sets. He just went through a period of months where he completely forgot his age and basic information like phone number and address. He answered 7 when he is in fact 11, and would just bring out the echolalia and repeat the end of the question when he was answering correctly (after a lot of work) beforehand. Just when something is mastered, it seems the brain turns to mush until it literally gels back together. Arg! So discouraging! That's why I'd love to do memory pages or journalling, just to keep track of every little good thing to celebrate. He says something every single day that amazes me. Today we were driving over serious potholes when he warned me, "be careful there, young mommy. It's ouchy here." LOL! I know it's echolalia from somewhere, but he's applying it appropriately, and that's the kind of stuff I just have to celebrate! Thank you so much for your encouragement!
  3. Debbie, I am so glad for you and your son! Way to go!!! All that hard work DOES pay off! My son has moderate-to-severe "classic" autism, OCD and hyperlexia. He excels at foreign languages and logo and font design, and we're bringing him home out of ps at the end of 6th grade, in a few months. Your story (and your son's story!) have deeply encouraged me! Thank you thank you for sharing!!! Karyn
  4. Thank you, Jennifer! You've given me the idea to sit in on a few of his school days and see what he likes. I know he likes his teacher this year lol, but I don't think I can bring her home, as good as she is! Those journal pages are great! Thank you for that! That encouragement (looking back at the small steps taken) is what I think I'll need, especially during those days/weeks that it seems nothing is working out. I know I'll be battling that monster! :001_unsure: Thank you for your insight and the link! Thank you! I know his schedule at school fluctuates and he does do well with minimal notice (5 minute warnings kind of thing) which is GREAT for my fly-by-the-sea-of-my-pants kind of homeschooling! My dd loved being hs'd because every day was an adventure lol! I can totally understand the rigidity though, and I suspect I will see battles about working. Exactly! I did some research last night and discovered loft cable systems as an easy way to separate the room. It's open concept, so I have to be quite strategic in my planning! I love the idea of having his input and allowing him to make choices about his school room. Thank you! I never thought of that! I'll keep that in my back pocket and if it is needed, then I'm willing to try it! Thank you! I think I'll post some pics of the space I plan on changing, maybe someone will have an idea or three :blush:
  5. So my boy (age 11) has done well in the public system, but is now ready to come home for more intensive 1-on-1. He has moderate-to-severe autism. It occurred to me yesterday that his needs will be very different from my dd's "typical" needs. He will need some degree of structure (to which this mama says YIKES!) He will need limited distractions (phone being off is fairly typical here anyhow, but I'm thinking of making curtains to separate our dining room area from everything else.) He will need lots of hands-on things, visual things, and a mom who can pull this off! HA! Anything you wish you knew when you first started with a child with ASD? Sensory system is mostly regulated with a snoezelen room in our basement, although I'd love to add a swing! Have you done anything special with your environment to help with smooth sailing? In particular, I'm worried about him understanding that home is where he schools, so I'd like a defined place at least for our 2 cores: math and comprehension. The rest is fun, hands-on and can take place anywhere. I just feel like I'm missing something, that there's some wisdom out there that I need to glean from... Has anyone made a journal which they use to highlight the celebrations and improvements? I can imagine there will be more frequent days of needing to look at the highlights here... what do you include in your journal? How do you have it laid out? (I am picturing writing ANYTHING worth celebrating. For example, today he was thirsty and got a glass and filled it with water all by himself for the very first time!!!) Do you outsource anything? Does your child have a hard time separating your mommy role vs teacher role? I can picture him yelling at me when he doesn't want to do school. Any tips? As you can tell, I'm all over the place here. I feel like a bee gathering all the info I can. I'm excited, but really want to start on the right foot. Any words of wisdom are greatly appreciated!
  6. Does she have a formal or suspected dx of some sort? My NT dd went through bouts of this starting at around 11 years of age. I did chalk it up to the age and the break. I always threatened that we'd never again take a break for math because it was like everything was lost after summer. BUT... we did take breaks, and she did the reviews, and I had to learn to keep my cool. :w00t: Slow and steady wins the race!
  7. LOL yes, those days will be over soon! I had therapists in our home from 9 to 5 Mon-Fri from the time my son was 2. When he was 6 it was cut down to allow for school, but we always had about 20 hours a week when in school. I'm the same as you, except a wee paranoid about the shape of my home. I found it frustrating that all of the therapists were young and didn't have children, so I felt judged that my house wasn't magazine perfect. In the end, I learned to be myself around them, and began the relationship with a somewhat flippant "this is us! Welcome to the zoo!" I found it did help to have a conversation with them about being welcomed into our family. When someone is in your home for that long, they do become like family. I always told them to feel comfortable, if you're thirsty, grab a glass, etc. When in my home, and we're both working on mutual goals for my child, you're a member of the family. They relaxed, I relaxed, and I felt I could be more real, instead of stressed. I always thought they should tell the workers in training "never judge a mom's wardrobe or the state of their house, you're not in their shoes!" I shared as much too, just to ease my own tension. Soon you'll settle into a comfortable groove and it won't bother you to answer the door in a bathrobe! :hurray: Glad to hear everything is working out so far.
  8. I really like RamonaQ's answer. I don't have anything to add to that, but I did want to share some of my own experience with you. I've never been a numbers gal. I just never understood math. I was hospitalized for 3 or 4 weeks when my class covered multiplication. There was a school strike when fractions began and although the school sent home envelopes of work, I didn't have help and fell behind. I never did catch up. I was a solid C or D student in math from then on. I took grade 9 math 5 times before I barely passed. I took grade 10 math 4 times. Where I lived, that's all you needed for a diploma. So when I failed grade 11 math the second time, something happened. Something triggered in my own mind. Why, oh why was I wasting time in math when I had all the life skills math I ever would need, and when I really did well in english and interior design? It was such a freeing thought: to focus on my strengths and never mind mastery of something that sought to enslave me! That was 1990, and I still feel free when I think of it! I have no regrets at all. It really does wonders for folks to, at one point, focus on the strengths and just move on. As the pp alluded to, we're not sure when that is for each child, but perhaps you're standing at the threshold of this transition.
  9. To echo Geodob, I'd work on her person before school. She is broken (in spirit) and needs mending, as much as possible. The first year of homeschooling out of ps or adoption is never wasted when you focus on attachment, character, relationships, snuggly read alouds and nature study. You'd be cultivating a new love of learning and mending a person at the same time. If it were me (I do have a special needs child and have taken in-depth adoption issues training) I'd scrap the idea of any academics whatsoever for at least a year. Call it unschooling. Call it relationship development. But call it, because the first year after adoption is hard enough. You're not wasting time when you're forming a foundation on which the entire future of your child (and family) grows.
  10. Having done this for almost 10 years, I can offer the following: ask about therapist turnover. Many places pay so little to the actual therapists working with the kids that they only stick around for 6 mths or so. You want someone for like 2 years. ask about what to do if the therapist and your child don't mix. What if there is nothing wrong with the therapist but your child doesn't mesh with them after a few weeks? Can your request another? how involved will the supervisors/specialists be? Ideally, you'd have weekly supervisor visits and at least monthly "ist" visits: occupational therapist, speech pathologist, psychologist, etc. what are their primary methods of therapy? Research these. Among my faves: PRT (the bomb!), Floortime (close second) and any language rich IBI program. Least fave: traditional ABA with negative consequences and discrete trial training, such as 80% of the time Tony will do xyz and they repeat and repeat till you want to bash your head in. You want lots of data, measurable, but not discrete trial training. My apologies to those who feel otherwise. But I hold to my opinion: my child is a child, not a circus seal to be trained on command. I guess you'd have to ask yourself what your goals are. If getting him to do things like a robot are them, then discrete trials work. As long as there's a consequence or reward. Much prefer the natural engagement of the other methods that focus on the whole child in a real life setting, with communication, play and life skills being helped along. Let's see... other questions... what about sick days from both sides? If the therapist is late, is the time made up? Can you sit in on and/or video record each session? I had all my sessions recorded for a few years and only had to ensure them that it was for my benefit, that it would not be broadcast. Will post more if I can recall more... hope some of that helps!
  11. We have a Gumdrop Drop Tech Series case. They're super strong so you can let the kids play without worries about dropping. :)
  12. triple post lol, and learning the ropes in the new forum!
  13. My dd is not a "moper" per se, but she gets in mopey moods occasionally. When she does, I politely tell her to go mope in her bedroom. One person should not have the right to affect the entire household's mood like that, so when she's feeling better she can come out and she's welcomed warmly. Now, when mama's moody lol, that's something else entirely!
  14. I have gone sugar free before and subbed Splenda or Stevia. Stevia sometimes leaves a yucky aftertaste (we found) but we could never tell the difference when using Splenda.
  15. Have you tried any of the Building Thinking Skills books? My son struggles greatly with following directions and I've tried a few pages of his sister's old books and they although they were too difficult for him, I could see how they would help kids who were a bit higher functioning esp. in comprehension. I have, however, used this with great success. Slow and steady wins the race!
  16. My eczema morphed into psoriasis 10 years ago. The cream that used to work started to burn like acid and the 2cm patch became 5 inches across of open ooziness that was just beyond horrible. My family feared I was getting flesh eating disease... I had to tape a plastic tuna can strainer over it just to protect it from my pants (it was on my shin.) When I did finally see the derm, she confirmed I no longer had the eczema that plagued me for 20 years. Perhaps your monster has morphed too, if the previous treatments aren't working anymore?
  17. Thanks, Sparrow. :grouphug: Thank you to everyone who voted! Please feel free to vote again! :D
  18. A ministry I volunteer with is competing to be awarded grant monies to better help them help others. It only takes a moment to register (a BREEZE if you have Facebook!) and you can vote once per day from now until Nov. 26th here on this site. If you could please vote for them, it would really make a difference. Thank you, thank you! For those that would like to know more without clicking, here's a quick copy and paste from the site's description of the ministry: Mosaic Centre responds to the needs of people experiencing poverty, hunger, homelessness or at risk of becoming homeless, in the community of Northeast Edmonton. We offer an open door and believe that all people are entitled to a full measure of dignity, respect and compassion. We know that through building healthy relationships people can be encouraged and mentored towards safe and healthy lives. Thank you for helping us help them! :grouphug: And I'm sorry, I'm trying to not feel guilty about posting this. I know it will annoy some. But I see these less fortunate people in the flesh and how they benefit from the Centre... I couldn't NOT do whatever I could to garnish more hope for them. So if you do have a heart for helping hurting people, please know that your support is a gift which will multiply in value. Blessings to each of you. :grouphug:
  19. Just some thoughts... Is he drooling? Does he have seizures or have you done MRI's or Evoked Potentials to rule out blind seizures? Have you seen an OT? I know my OT would immediately jump on oral stimulating toys. She brought my boy some a while ago, some rubber-type animals that are made to vibrate in your mouth, and other common ones. I'd start a program of that first, in intervals closer together than what he is currently doing. In other words, if he's wiping his mouth every 5 minutes, I'd use oral stimulation every 4 minutes, etc. Just to catch it first. Then I'd try an interruption procedure. If you need some good research on this, pm me your email addy and I'll send you all the info our OT sent us on this topic. Let me just say, I hear you. I need reality checks sometimes. We need to pick our battles and if you decide this is in the top 3 (or so) things you'd like to tackle right now, then do it. But you know, there are worse things in the world than obsessing about wiping your mouth. If your boy is happy and there's no real reason to modify the behaviour, then you need to decide if it's worth the battle or not. If it were my boy and I knew he simply must wipe, and I've decided it's not a battle worth fighting, then I'd ask myself: what is socially appropriate here? Then I'd buy a several packs of men's hankies and let him keep one in his pocket, a new one every day. Soon you can train him to look at it when he's in the bathroom. "Is it dirty?" If so, show him how to get a fresh one from under the sink. Hope that helps a bit!
  20. I'm thinking of ordering from the States, so they'd have to deliver to Canada and have a great website with (as accurate as possible) colour swatches. I've painted my main floor and it is somewhat open concept. I bought neutral coloured pleated fabric shades for 9 of the 16 windows, but am looking for a room darkening curtain to go over those 9, and then coordinating shades for the kitchen, and coordinating curtains for the french doors leading to the backyard. Where would you suggest? I've already checked Sears, the Bay, WalMart, Ikea, Hunter Douglas, and Bed, Bath & Beyond.
  21. Yup! Anything small and wooden can work. I use toothpicks all the time. :001_smile:
  22. It's very common and normal, especially with clay based material. It can only be heated so many times, after that it internally breaks down and just absorbs heat.
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