tag:blogger.com,1999:blog-5827743438706478479.post1400710972010078826..comments2024-03-20T07:55:33.231+00:00Comments on Traveling with Autism: Who is medicated?Lisamareehttp://www.blogger.com/profile/18445509438246694219noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-5827743438706478479.post-11067641915183479562010-08-05T14:24:44.112+01:002010-08-05T14:24:44.112+01:00im sorry that there was someone who thought u coul...im sorry that there was someone who thought u could have done better for gracie. I know you couldn't have done any better for her, or for the rest of you xxpamnoreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-10114174740170805122010-08-05T11:29:37.415+01:002010-08-05T11:29:37.415+01:00Our daughter was on Risper for two years and it wa...Our daughter was on Risper for two years and it was the best and at the time only decision we could have made. And the hardest. Medication made it possible for us all to sleep, for her to begin to engage with the world again, to learn and function and to take on the positive behaviour support strategies that we has been trying to teach her. <br />I hate that parents have to justify our decision to help our child in this way. But it seems that as soon as the word 'medication' is uttered, judgment follows soon behind.<br />If those who judge so easily did have to walk a mile in our shoes, they'd soon get blisters. Not to mention our kids - because she was not a happy child, and she is now. Happy, secure, functioning at school, and now two years later weaned off the meds.Amandanoreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-19720970765900992112008-08-27T16:37:00.000+01:002008-08-27T16:37:00.000+01:00Dear Anonymous, I have recieved your comment and I...Dear Anonymous, I have recieved your comment and I will be happy to run it if you will firstly, create a sign on name so I can identify you in future; and if you say whether you are a parent or a professional.<BR/>Children with autism tend to live in private homes, where there are challenges and priorities beyond the laboratory conditions of an ABA clinic or school. <BR/>The "going to the store" analogy demonstrates how most parents of TYPICAL children go to the supermarket with their kids, as observed by this scientist. It is also keenly observed by most marketing and merchandising companies, hence the placement of said DVDS, sweets and snacks in the strongest position for "nagging" or "pester power" in the layout of the store.<BR/>As I said the "super parent" will have set the boundaries and parameters of expected behaviour long before it came to doing a general shop with their kids; hence their immediate acceptance of the NO!.<BR/>Many ASD parents will have learned to do controlled shopping only as you describe, and save their "big shop" for when their children are in a school or other care setting, or they shop online and have it delivered. I would never attempt a big shop with both my ASD kids, and if I am alone without anyone to watch them, I grab the minimum at my local service station, drive through.<BR/>Any visits to the supermarket with kids will mean a structured "deal" being done before hand, and the goal is usually more about going for a "good" walk (straight back, no dragging or pulling), or reading a list and learning simple money values and self scanning the few groceries, or eye contact and greetings; usually nothing to do with the actual provisions being bought. <BR/><BR/>As for the "sleep" programme. I consulted with my local health service team for over 2 years for help with my daughter's behaviour. Repeatedly suggesting that we needed some kind of in house help. I briefly considered going to the States to attend the C*rbon* Clinic, but simply couldnt afford it; and could not work out how to replicate and then fade the Clinic conditions while maintaining the behavioural treatment plan we would hopefully adopt.<BR/><BR/>You see, as a family we had tried standing up to her, and as I said in the coke machine analogy, most kids would give up when they saw that you were going to hold out. They stop putting the coins in, and banging the side of the machine, and walk away.<BR/>Often you are not up to the fight. Someone in your house may have a job they have to get up for and do well to put bread on the table, there may be another child who is very distressed by the Tantrumming child's behaviour, in this case our son who also has ASD, self harms when distressed, (hand bites till his hand bleed) and repeatedly says "Bratty is crying".<BR/>We live in a small house on a new estate where the developer did not consider to make the walls very thick between rooms, or indeed each house as our houses are terraced (joined together), and our very very unpleasant neighbors would bang on the walls throughout our daughters tantrum.<BR/>Yes, I see what you mean about the car; but my daughter found it rewarding to be driven up and down the highway; I got that from the charts. So when I had reached the point of breakdown (as had my husband, son and neighbors) I would get in the car, in the driveway and stay there. So I was the only one who had to listen to the screams as the car is a lot more soundproof than our flimsy house. <BR/>I don't what else I was expected to do. I would never raise a hand to my child, and there is simply no way to turn off the sound in such circumstances, short of gagging her. So the car was the only solution.<BR/>We have applied for a grant towards having a room renovated and insulated. Our wooden floors suited us when the children were incontinent (a long process) but tend to carry the sound. We can then start to create a safe room for "time out" without deafening everyother occupant of the house.<BR/><BR/>Our daughter was also in a state managed 6-1 special needs placement at the time of the medication. Where her behaviour was very poorly managed and constantly given in to. Coming home to find Mummy to be the strict one was very confusing and inconsistent for our girl. So she saved her worst blow-ups for me.<BR/><BR/>In her new ABA school which is supervised and consistently managed, her anxiety, her obsessive compulsive tics and behaviours and her tantrums had all reduced, both in intensity and frequency (I charted) so I began to reduce the dose.<BR/>The medication was never intended to be a substitute for good parenting and behavioural management. It was just to give us a window of relief, to help take control again; and to frankly, save our marriage and keep me out of a rest home or hospital.<BR/>Now that school has returned and we will not have more than a 2 week break for the next 11 months, I can imagine reducing the medication to the point of phasing it out altogether, in conjuction with some treatment plans to be introduced as part of her individual education plan. The difference it makes to an active mind, to be challenged and interacted with all day, cannot be underestimated. The children are only back at school 3 days and already, things that caused major melt-down a week ago, can be worked out in a matter of minutes.<BR/><BR/>As your lecturer should have told you in University, a good Behavioural treatment plan always takes into account environment. If there are factors in that environment that will affect the implementation of that plan, then they have to be taken into account. If a family cannot sustain a suggested course of management, then you have to adapt the plan; if the child is to live with the family.<BR/><BR/>That is why experience behavioural experts always suggest in lectures, "make up your mind when you put the key in the door, either give in straight away, or don't give in at ALL."<BR/>I went up to one of these lecturers (he has a clinic in Rockaway NY) after a seminar and asked "what do you do if you made the wrong call?, if you thought you were able to hold out, and 2 1/2 hours later you found yourself hiding under a blanket while your child roamed the house, ready to scratch your face or kick you in the jaw, because they couldn't get you to put their video on 20 volume at 3am?"<BR/><BR/>His answer, "Then you need help".<BR/><BR/>(no shit Sherlock!)<BR/><BR/>I take it from your comment and use of idiom, that you are resident in one of the lucky states where behavioural intervention is state sanctioned and provided for by law, in the child's home. <BR/><BR/>This sadly is not the case in the Republic of Ireland and it has taken me 6 years to get my children into a recognised ABA school.<BR/><BR/>Help in the home will be provided unofficially as part of that. And any treatment plans will be developed in consultation with me. However, There is ZERO structure in place for home based overnight treatment plans. And short of being selected for a reality television "supernanny" type show (I have applied) I don't see the funding or structure being provided for in the near future.<BR/><BR/>The solution offered is one of residential care, and as we found when we investigated short term residential respite, there is no training in ABA or behavioural management, and the situation worsens.<BR/><BR/>I love my daughter. I want her to live in our family house with her Father and Brother. I did not take the decision to give her liver an additional chemical to process lightly. I can assure you of that.<BR/><BR/>If you are ever in our neighborhood, and interested in doing some "pro-bono" work, then perhaps you will look us up. Until then consider this<BR/> "Before you judge me, walk a mile in my shoes", At the very least you will be a mile away, and have very very lovely shoes.<BR/><BR/>xx<BR/><BR/><BR/><BR/><BR/><BR/><BR/>I take it from your comment to meLisamareehttps://www.blogger.com/profile/18445509438246694219noreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-84974984064910118772008-08-23T22:07:00.000+01:002008-08-23T22:07:00.000+01:00What difficult decisions and challenges you face e...What difficult decisions and challenges you face every minute of every day. <BR/><BR/>I admire you.Elizabethhttps://www.blogger.com/profile/03406942482508439839noreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-37016864227532815582008-08-21T14:39:00.000+01:002008-08-21T14:39:00.000+01:00If Bratty had been born without a foot, would you ...If Bratty had been born without a foot, would you hesitate to get her a prosthetic one?<BR/><BR/>Medication -- used properly and cautiously -- is prosthetic brain chemicals for people whose bodies don't produce the right stuff automatically.<BR/><BR/>While I think it's <I>possible</I> to go overboard and start medicating away normal variations in behavior, it's equally reckless to refuse to medicate conditions that are mostly medical.drwendehttps://www.blogger.com/profile/10583869876969470655noreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-51300958175991326892008-08-19T21:54:00.000+01:002008-08-19T21:54:00.000+01:00Hammie, every time I start writing something in re...Hammie, every time I start writing something in response to these heartbreakingly honest posts, it sounds hollow and idiotic and unhelpful. So I just want you to know that I'm thinking of you. And I'm sending you transatlantic hugs. Pretty much nonstop.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-48758683989120695082008-08-19T19:38:00.000+01:002008-08-19T19:38:00.000+01:00I echo Nick. He sums it up for me. XXI echo Nick. He sums it up for me. XXAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-64827871582469190772008-08-19T06:40:00.000+01:002008-08-19T06:40:00.000+01:00this post rings 110% familiar.just not so much of ...this post rings 110% familiar.<BR/><BR/>just not so much of the bottles but the Mark Duran book and the car and those d**d neighbors.<BR/><BR/>dance, and sleep, on!kristinahttps://www.blogger.com/profile/01104388229716638534noreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-39024196943397331732008-08-18T21:51:00.000+01:002008-08-18T21:51:00.000+01:00Your choices are yours to make, completely based o...Your choices are yours to make, completely based on your experiences. It's going to sound like a judgment, but it seems like your choices are good ones from the view on this side of the pond. When it comes to sleep, I'd long for the days of paregoric in yours situation. So I'm kind of draconian that way. Mama needs sleep. Our kids sleep like they're in a coma, so we don't have this kind of issue. Anxiety, mercuriality, probably depression will be our medication maladies of choice.<BR/><BR/>EEJ Willinghamhttps://www.blogger.com/profile/07333507287598525182noreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-8548192216421728972008-08-18T20:59:00.000+01:002008-08-18T20:59:00.000+01:00Nick; get back to me. Send me a song choice.K-line...Nick; get back to me. Send me a song choice.<BR/>K-line, thankyou. Only parents know what it is like to be truly sleep deprived. When was the last time you stayed up (outside your own home) past 1am by choice?<BR/>Pearl: good advice. I will remember it. It's just that insulin is pretty black and white. Risperadol has so many shades of grey.<BR/>Cybil; thankyou too. I once told a relationship counsellor that I thought there was no such thing as a brickwall. You have to blast through it somehow. It makes me an intense person. But I can see it is a strength<BR/>My sisterwolf: Yes, (see above comment) I think it is over half (which is huge for a catholic country) But we seem to have made it.<BR/>and again I say:<BR/>"she gets me".<BR/>xx<BR/>Skye: thankyou. Again a mother knows. I love your blog too!<BR/>Casdok: thankyou,. We thought that too. But we had to get to that decision alone, no one pushed us.<BR/>Seeker, my Bratty is dark haired, long eyelashed and smells gorgeous in the morning. I forgive her everything when she is asleep. That is the image I will have in my mind when I am old. She will always be my baby.<BR/>Maddy, I have since learned to wear ipod earphones. She tolerates that. xxLisamareehttps://www.blogger.com/profile/18445509438246694219noreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-89916872855297514792008-08-18T17:36:00.000+01:002008-08-18T17:36:00.000+01:00Two hours was my limit, then I'd have to call in t...Two hours was my limit, then I'd have to call in the cavalry or wear ear-plugs.<BR/>Best wishesMaddyhttps://www.blogger.com/profile/05828186178060722812noreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-18249449595683838412008-08-17T23:22:00.000+01:002008-08-17T23:22:00.000+01:00I just read your comment in my post.Thank you so m...I just read your comment in my post.<BR/>Thank you so much my dear for your words. Tears come to my eyes, but in a warm way, thinking of what you were telling she would remember.<BR/>Thank you my darling for your support!!!<BR/>Love<BR/>xoxoSeekerhttps://www.blogger.com/profile/04128993876847534647noreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-83280831849935465822008-08-17T22:42:00.000+01:002008-08-17T22:42:00.000+01:00My dear I'm soooooo sure you do what's the best fo...My dear I'm soooooo sure you do what's the best for your kids and the whole family.<BR/><BR/>Sometimes we have to take difficult decisions (I know, I've been there with my parents) for the sake of them too.<BR/>Being without sleep it's violent and I'm sure your child was suffering too.<BR/>So it's not time to feel guilty, it's time to be logical.<BR/>You only can help your kids if you're ok, if not... who else?<BR/><BR/>Also, I would like to call your attention that drinking alcohol, in my umble opinion, it's worst than to take an anti-depressant, because alcohol has more dangerous behavior effects.<BR/><BR/>You say "it has helped us become a stronger and happier family" so what you're doing just HAS TO BE RIGHT.<BR/><BR/>Keep going darling!!!!!<BR/>Your path is tough so don't torture yourself for trying to make it easier for everyone.<BR/><BR/>Sending good vibrations with love.<BR/><BR/>xoxoSeekerhttps://www.blogger.com/profile/04128993876847534647noreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-26433123760713984692008-08-17T21:52:00.000+01:002008-08-17T21:52:00.000+01:00What can I say Hammie, you are a great mammy, and ...What can I say Hammie, you are a great mammy, and I look up to you. If we could all be half the mammy you are, we would a live in a pretty good place. Take it one day at a time, and if that day is too tough, take it one hour, one minute at a time. And as for the meds, if it makes you a happy mammy, and makes Mr.Hammie a happy daddy, and makes Boo and Bratty happy kiddies, then it is well worth it...Cathal's Mammyhttps://www.blogger.com/profile/09755001510595381520noreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-19513852094991594512008-08-17T12:21:00.000+01:002008-08-17T12:21:00.000+01:00It is a hard decision, and when i finally gave in ...It is a hard decision, and when i finally gave in i wondered why i hadnt done it sooner.Casdokhttps://www.blogger.com/profile/03497897393162856190noreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-53577947977124982572008-08-17T11:52:00.000+01:002008-08-17T11:52:00.000+01:00Sleep deprivation is truly torture, and anything t...Sleep deprivation is truly torture, and anything that can help you all survive (and thrive) cannot be a bad thing.<BR/><BR/>I just want to say how insightful and fascinating your blog is, I love the way you write!Skyehttps://www.blogger.com/profile/11956978624939655725noreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-60573671366960304232008-08-17T03:46:00.000+01:002008-08-17T03:46:00.000+01:00This post evoked vivid memories of the battles tha...This post evoked vivid memories of the battles that rocked my house for years. No one understands the full meaning of the word 'desperate' like the parents of autistic kids.<BR/><BR/>I worry about meds too, but if they help a child to calm down enough to go to school, and to interact without screaming their heads off, they are making life more livable and create a path toward joining the rest of the world.<BR/><BR/>What is the divorce rate for parents of kids 'on the spectrum'....something huge, right?<BR/><BR/>Unending stress is murder on the human organism! Whatever gets you through the day without ruining your liver or impairing your judgement is good medicine for you.<BR/><BR/>Things will get better. And this post belongs in your effing book. xoxoSister Wolfhttps://www.blogger.com/profile/13105400876362635324noreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-35307270736317788372008-08-17T03:22:00.000+01:002008-08-17T03:22:00.000+01:00Hammie, we do what we have to do! No time for gui...Hammie, we do what we have to do! No time for guilt, if giving my child some medication to make them sleep and feel better and restores the family to rights - hell, i'll do it. I heard some excellent advice once, that I like to claim as my own "The only way over it, is through it". Keep going.<BR/>Also your point about the coke vs slot machine is very timely for me - I must stop paying out!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-54878842119189294942008-08-17T02:07:00.000+01:002008-08-17T02:07:00.000+01:00I am sure you have probably heard something like t...I am sure you have probably heard something like this before, but would you feel guilty if you needed to give a diabetic child insulin? Probably not. So, dont feel guilty about giving Bratty medication that is helping her and the rest of the family. <BR/><BR/>You said yourself that you are a stronger and happier family because of it, so dont feel like you have to justify your choices to anyone, even yourself. <BR/><BR/>Hugs for you =)ATenoriohttps://www.blogger.com/profile/07933860105490512976noreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-19553852929822502602008-08-17T01:42:00.000+01:002008-08-17T01:42:00.000+01:00Let me start by saying that you are an excellent p...Let me start by saying that you are an excellent parent, that's for sure, and you have only done what is most reasonable to work in the context of your whole family. I know from wine as object of self-medication. When my child was young - and I was hideously sleep deprived (oh, and she would scream for hours at a time) - I drank/ate cookies just to get from point a to point b. That screaming child / exhausted combo is a special kind of torture and I have nothing but sympathy. I'm sure you are on the right track.K.Linehttps://www.blogger.com/profile/15350615302797686048noreply@blogger.comtag:blogger.com,1999:blog-5827743438706478479.post-51267545579214918402008-08-17T01:02:00.000+01:002008-08-17T01:02:00.000+01:00Want to comment. Want to say so many things. Don't...Want to comment. Want to say so many things. Don't know what to say.<BR/><BR/>Thank you.Nick McGivneyhttps://www.blogger.com/profile/03603579300515543458noreply@blogger.com