Pegs Posted August 3, 2018 Author Share Posted August 3, 2018 Update. We started meds, an SSRI, after both the psychologist and psychiatrist told me not to even bother trying to bring him back until he was medicated. He had panic attacks in both waiting rooms and was entirely unreachable during those times. Now we're 7 doses in and the change in him is incredible. He hums and sings throughout the day, has lots of happy stims, spontaneously gives me thumbs up and tells me he loves me, and yesterday he not only attended a homeschool rollerskating event, but actually participated, asked to go back, and had lunch and a play at the park with friends afterwards. I've always considered medication to be a last resort, especially for such a young and quirky brain, but I'm really glad I didn't wait any longer. I have my child back. 7 Quote Link to comment Share on other sites More sharing options...
Terabith Posted August 3, 2018 Share Posted August 3, 2018 Yeah, the difference medication made to my daughter was pretty amazing and life changing. She was only five when we started her, but I really wish we had started at least a year, year and a half earlier. Before the medication, absolutely nothing else we did made any difference. I never thought I'd put my five year old on psychoactive drugs, but it was the best parenting decision we've ever made. 1 Quote Link to comment Share on other sites More sharing options...
Pegs Posted August 8, 2018 Author Share Posted August 8, 2018 We've been upgraded to ASD-2, which opens up a lot of funding opportunities, especially for ongoing psychological support. 4 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted August 8, 2018 Share Posted August 8, 2018 (edited) Rough and good at the same time, sigh. Will the funding be state or your insurance? Medicaid or a disability scholarship? If you can get a behaviorist, that would be good. Doesn't have to be straight/pure ABA, but for us a behaviorist with a lot of tools in her toolbox has been really good. She also helps me problem solve with him, which has been good. And of course you can use a psychologist. We have a psych nearby who is a BCBA + psych, and we're going to try some in-office. To me though the stuff the behaviorist does with him in-home is really valuable. They work on play skills, things that directly improve his quality of life and his ability to have a playdate. Did they run good testing as part of this, or is language testing next? Language radically affects behavior, because the behavior becomes communication to make up for the language gap. So when you're at that level 2 support, it can be telling you there are language deficits. My ds had so much scripting and memorized language, we didn't get how severe his deficits were. We knew we weren't getting polite language, but we honestly just thought he was contrarian. So anyways, something to look into next if you now have funding. The TNL, TOPS, and SPELT are all good. Not a fan of the CELF or even the CASL. The CELF especially provides models too often, so it doesn't bust through where kids can follow models but can't generate it on their own. The TNL showed the narrative language issues, and the SPELT showed his breakdowns at the word level that had occurred because he had memorized language via scripting. Back to the psychologist thing. With ds, he's right back to under the table if he gets stressed out in a therapy session. Like speech therapy, anything therapy. You might want to do OT, work on Zones of Reg, get him going with other therapies that help him say how he feels, say he needs a break, etc. and help him be able to use strategies BEFORE you put him in an office counseling session. Like when we started, the behaviorist was using a lot of kinesthetic and sensory things to keep his body calm while she'd work on hard things with him. Talking about emotions, thinking about social thinking, is HARD! So if he's going to do anything hard, he needs support. Otherwise he might be right back under the table, even if the therapist is whatever stripe and awesome. Some of that is personality of the therapist but more it's just their toolbox and whether they're coming in with tools to help keep him calm. It's something to ask. In-home work with a behaviorist can build that foundation so he's ready to work with someone who provides less support. Edited August 8, 2018 by PeterPan 1 Quote Link to comment Share on other sites More sharing options...
Pegs Posted August 8, 2018 Author Share Posted August 8, 2018 We're in Australia, so funding will be coming from NDIS. The updated diagnosis was provided by a psychiatrist, but I'd like to revisit evaluations once we're on top of DS' anxiety, so someone can actually run some meaningful assessments. He's actually had a language explosion since the anxiety meds started working. He's become very conversational, whereas before he was using spoken language mostly to make requests (some more reasonable than others). 2 Quote Link to comment Share on other sites More sharing options...
Pegs Posted August 8, 2018 Author Share Posted August 8, 2018 Oh and we started using an AAC app, which has been really handy in high-stress situations. Where verbally I'd only get monosyllables or no words at all, with AAC I get whole sentences, and sometimes even sass or jokes. 2 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted August 8, 2018 Share Posted August 8, 2018 (edited) 6 hours ago, Pegs said: Oh and we started using an AAC app, which has been really handy in high-stress situations. Where verbally I'd only get monosyllables or no words at all, with AAC I get whole sentences, and sometimes even sass or jokes. That's AMAZING! And when they're building that kind of language in the app, that tells you the language is there and it's just shutting down when he's stressed and can't handle more. My dd's language shuts down like that too. For her, filtering a lot of language from background noise (auditory processing) adds to that load, so the lectures in college, etc. leave her worn out and her language drops. We went to Able Kids in Colorado and got her the filter. We're hoping that helps in college this fall. AAC is a good plan, but also text can work. The person can just type the things in and show the phone for what he meant. People (teens, young adults, tech generation) are pretty cool with that. 8 hours ago, Pegs said: He's actually had a language explosion since the anxiety meds started working. He's become very conversational, whereas before he was using spoken language mostly to make requests (some more reasonable than others). That's amazing too! Super excited for you. Edited August 8, 2018 by PeterPan 1 Quote Link to comment Share on other sites More sharing options...
Lecka Posted August 8, 2018 Share Posted August 8, 2018 That’s some great progress! I’m glad to hear it ? 1 Quote Link to comment Share on other sites More sharing options...
Pegs Posted August 8, 2018 Author Share Posted August 8, 2018 Wishing your DD all the best with her filter, PeterPan. ☺️ Quote Link to comment Share on other sites More sharing options...
Pegs Posted August 8, 2018 Author Share Posted August 8, 2018 10 hours ago, PeterPan said: That's AMAZING! And when they're building that kind of language in the app, that tells you the language is there and it's just shutting down when he's stressed and can't handle more. Yes exactly. It was a little slow and cumbersome at first, but now he has his most used words and phrases on buttons, and knows how to get to them quickly. He uses an app called "Speech Assistant" on an android device, in case anyone was thinking of trying it. I wish we'd started sooner - it's such a great tool for keeping lines of communication open. We did some AAC role play before DS had a visit with his other parent a few weeks ago, trying out possible stressful situations. I told DS, "Eat this slimy piece of fish." He replied with his device, "Why would I do that? You must be mad." 1 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted August 9, 2018 Share Posted August 9, 2018 Pegs, I'm happy to hear your son's progress, although a bit sad that you had to turn to antidepressants . You know what is best for him though! I was under the impression that anxiety was a new thing for you boy and that it started when you started this thread. You mentioned in another thread that he is on melatonin. Just thinking, did the anxiety appear after he started the melatonin? If it was preexisting, obviously, it is not connected. But, if it wasn't, know that my 9-year-old started developing anxiety from bad dreams with the use of melatonin. We stopped the melatonin and the anxiety went away. Anyway, I felt compelled to share that with you just in case. I wish you all the best, M Quote Link to comment Share on other sites More sharing options...
Pegs Posted August 9, 2018 Author Share Posted August 9, 2018 Hi M. The anxiety preceeded melatonin use by years. It got much harder for him just a few months ago though, and he developed agoraphobia very quickly. The antidepressant is helping. I'm glad I didn't wait for years before trying it, only to realise that he'd been suffering in the absence of chemical support which really helps. It was a hard call, but I'm comfortable with my decision. 2 Quote Link to comment Share on other sites More sharing options...
Guest Posted August 10, 2018 Share Posted August 10, 2018 (edited) I'm sorry, Pegs, I was not aware of that ☹️ ! I sincerely hope and pray for the best, and I have no doubt that you are trying to do what you feel is best for your boy. I hope that you have a good support system of professionals that will help guide you on the strategies he will need to help your boy now and in the future. For younger kids I favour mindfulness. I keep it simple with main focus on the breathing and sensing his heartbeat to slow it down. My youngest has struggled more with sensory issues than his brother and when he was younger I/ we hugged him and paced back and forth with him in my arms mostly, but my hubby's as well. I would walk off to a quieter place with him, leaving my oldest with dad. I have used the method of desensitization (I would ask him for us to go back even for a minute to help him start adjusting. He was in control. That is how desensitization works) but I would not recommend it to you at this stage if you are dealing with anxiety and have not tried it before. My son has had mainly issues with sounds in some places and we have come a long way with desensitization. It is an approach often used by psychs and part of CBT, so you could ask the psych if you are interested in the near future, since the meds are helping. A psych can also help teach you the strategies to help guide your son with. You and your boy will remain in my thoughts, M Edited August 10, 2018 by Guest Quote Link to comment Share on other sites More sharing options...
Pegs Posted August 10, 2018 Author Share Posted August 10, 2018 We use Sitting Still Like a Frog for mindfulness every day. Do you know it, M? The audio exercises are available for free here: www.shambhala.com/sittingstilllikeafrog/ Quote Link to comment Share on other sites More sharing options...
Guest Posted August 10, 2018 Share Posted August 10, 2018 1 hour ago, Pegs said: We use Sitting Still Like a Frog for mindfulness every day. Do you know it, M? The audio exercises are available for free here: www.shambhala.com/sittingstilllikeafrog/ I have seen it recommended on the LC board but it is not the way I approach mindfulness, personally, which is why I never bought it. If it's working for you though, then I am happy to hear it. I use mindfulness more as it is integrated into CBT. One of the things I teach my boys is that when their heart is racing and anxious or upset, the mind cannot think, focus, observe, and problem solve. My youngest is better at the breathing. My oldest uses other strategies that work better for him. I don't do body scans. Not my thing! I'm more practical. I also do not feel that we need to be happy or calm all the time. Everything, including a healthy dose of anxiety, has its purpose. I come from a culture that is lively and passionate, and I have strong beliefs that I follow and teach my boys ?. Quote Link to comment Share on other sites More sharing options...
Guest Posted August 14, 2018 Share Posted August 14, 2018 I wanted to clarify that when I talk about desensitization, I am referring to its application within the cognitive model (CBT) not as it is applied in ABA. The approach differs so I wanted to make sure I clarified that. Quote Link to comment Share on other sites More sharing options...
DawnM Posted September 19, 2018 Share Posted September 19, 2018 On 4/25/2018 at 8:42 AM, Ravin said: Does he have a weighted blanket? On 4/25/2018 at 9:06 AM, Pegs said: No. It's on my wishlist if we get funding. You could also try a wearable weighted vest. You could even get a small fishing vest and put weights in the pockets to try, although the material might be too stiff if he has sensory issues. But even a lap blanket would be helpful. You can make them too. If you do any light seeing, it isn't hard to make. Quote Link to comment Share on other sites More sharing options...
Pegs Posted September 19, 2018 Author Share Posted September 19, 2018 I actually splurged on a weighted blanket for bed, a weighted lap pad for seated activities, and a lycra body sock for extra proprioceptive input during movement breaks. 2 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted September 27, 2018 Share Posted September 27, 2018 On September 19, 2018 at 7:15 AM, Pegs said: I actually splurged on a weighted blanket for bed, a weighted lap pad for seated activities, and a lycra body sock for extra proprioceptive input during movement breaks. Ooo, good stuff! I need to get my butt around and do this! We're finally back from our long, sunny trip where we broasted on sand till we recovered our mojo or at least part of our mojo. We're finally excited to work again. I made a weighted blanket for dd this summer but it was too much. I want to make a smaller size for ds that he can just put on his lap. So you ordered the lycra sock? I ordered one years ago for ds and he LOVED it but outgrew it. I need to order or sew and get that into our room, mercy. Quote Link to comment Share on other sites More sharing options...
kbutton Posted September 27, 2018 Share Posted September 27, 2018 My son liked heavy things (a large sheet folded up was about right) strapped to his chest/back with an ace bandage type of wrap. It criss-crossed over his shoulders as well. He didn't use it for very long at any given time, but it did help. He seemed to need a little weight and a little pressure together. Wrapping up in a blanket and rolling across the floor can sometimes give a little weight and squeeze together. I don't see the two mentioned together a lot, but for my son, they go together. Quote Link to comment Share on other sites More sharing options...
Lecka Posted September 27, 2018 Share Posted September 27, 2018 My son had a phase where he has a body sock stuffed full of stuffed animals, and then he would want someone to lay on him. His siblings liked to lay on him so that worked out lol. I had forgotten about that! Quote Link to comment Share on other sites More sharing options...
Pegs Posted September 28, 2018 Author Share Posted September 28, 2018 10 hours ago, PeterPan said: Ooo, good stuff! I need to get my butt around and do this! We're finally back from our long, sunny trip where we broasted on sand till we recovered our mojo or at least part of our mojo. We're finally excited to work again. I made a weighted blanket for dd this summer but it was too much. I want to make a smaller size for ds that he can just put on his lap. So you ordered the lycra sock? I ordered one years ago for ds and he LOVED it but outgrew it. I need to order or sew and get that into our room, mercy. Welcome home! We bought our sensory tools at a little special needs toy shop down down the coast. Made an excursion of it and tried a heap of stuff out in store. DS had a great time. 1 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted September 28, 2018 Share Posted September 28, 2018 13 hours ago, Pegs said: at a little special needs toy shop down down the coast. Ok, which coast? I've only been to the pacific coast one time in the last 20 years, but if it's atlantic side maybe that would happen sooner! That place sounds like it would be worth the drive! Quote Link to comment Share on other sites More sharing options...
Pegs Posted September 29, 2018 Author Share Posted September 29, 2018 I'm sorry; I'm in Australia! Quote Link to comment Share on other sites More sharing options...
PeterPan Posted October 1, 2018 Share Posted October 1, 2018 On September 28, 2018 at 10:30 PM, Pegs said: I'm sorry; I'm in Australia! That would be quite the field trip! 1 Quote Link to comment Share on other sites More sharing options...
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