Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Good and Ready

with 22 comments

For once, Pudding’s communication folder didn’t come home with her from school.  Instead of looking at the day’s notes, I was going to have to rely on whatever information she chose to volunteer.

I took her to the bathroom, and found a small scrape covered with a princess band-aid (plaster).   I asked her what had happened, and I got the same echolaic response she has said for 18 months, “I fell down on the playground with Zoey*.”

I sat down with her to ask about her day.  Usually she graces me with a couple of answers, and I piece together the rest from her teacher’s notes.  No such luck today. She ignored my every question, until I gave up.  I worried.

It has recently been suggested to us by Pudding’s speech therapist that we might need to consider medication to help her reach her full potential.  Not that we haven’t considered it before, but the suggestion coming from somebody else is a confirmation of our fears.  And of course, it isn’t as easy as deciding to medicate, or not.  Do we treat the anxiety, the sleep disturbances, or the attention problems and hyperactivity?  Do we accept that treating one area might lead to more problems in another?  And of course, Pudding is so very young, who knows what damage might be done on medicine that hasn’t been approved for use in a child her age.  There are side effects, and there are dosing issues.  It can takes months, even years, to get the levels right.  Her behaviors are manageable to us at home, but can make her unteachable.  International schools don’t have to abide by the laws protecting her here.  Her attention problems might be enough to keep her out of mainstream education.  Not that I feel that mainstreaming is necessarily the right option for her.  As you can see, one question leads to another, and it becomes a lot more complex.  Ultimately, there is no right or wrong, parents just do their best making difficult decisions, and hope that the passing of time proves them right.  The adage about every child on the spectrum being unique is true, which just adds to the confusion.  We would have no way of knowing what the consequences would be until we went ahead and tried medication.  Then, as with all therapies, have no idea if progress was a result of the prescription, another therapy, or just natural brain development.

We’d weighed up the pros and cons, and decided we weren’t ready for medication for Pudding.  We would keep trying other ways.  But what if she keeps pulling away from us?  I couldn’t help but worrying about the wisdom of going against the advice of a respected professional, particularly one who has seen many children with Pudding’s diagnosis, and has nothing to gain from the suggestion.

After taking a bath, she asked me to put her to bed.   Every other night for a couple of weeks she has requested Daddy, so I was pleased to be summoned.  We read a story, then she asked to cuddle in bed.

She asked me: “What did you do at school today?”

I took the bait, and repeated the question back to her.   Then she proceeded to tell me, with more detail than she ever had before, about every activity she had done.  You (sic) ride on the bus.  You say hi to Ms. S, and {lists all the other pupils and aides}.  I do circle time and centers.  I do dinosaur puzzle.  You (sic) play with dolls and trains with Joey.*  I do gym, you (sic) fall down, and get a boo-boo.  I turned the computer on, I played music on the computer, I turned the computer off.  For lunchtime I ate chili, and crackers, and a berry juicebox, and apple sauce, and raisins.  You (sic) played a game. If I asked her a question about it, she’d consider, then respond appropriately.  We had a 10 minute conversation!  She was a different child from the aloof one I’d tried to quiz earlier.

Once again, the lesson that it will be her way, or no way.  You’d think I’d have got that by now!  I’m okay with giving her more time, we have plenty of it.  We’ll wait until she is good and ready, perhaps then we will be too.

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Written by Spectrummy Mummy

January 11, 2011 at 7:20 am

22 Responses

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  1. When my oldest was first diagnosed we were very unsure about medication. My cousin, whose child was dxed years before asked me one simple question”can he focus and learn without the medication?” The answer was no. If they cannot focus the therapies will do them no good. I think that society needs to reevaluate its view of psychiatric medications. We somehow think that it is an evil instrument when in reality it allows those with chemical brain imbalances to lead normal lives. Yes that is what adhd, ocd, etc is, is a chemical brain imbalance. What you need to do when you do decide to explore medication is to make sure you find an experienced psychiatrist who can parcel out Puddings issues and help you decide how to appropriate handle her issues. (In fact a really good psychiatrist will actually tell you how to handle the issues and which should be addressed and how they are interconnected)They all say they can do that, but that is not true. It is very specialized adolescent psychiatry. Also medication does change throughout their lives. They are growing and changing and what may work one day doesn’t work the next especially when they hit adolescence. We just redid our boys medical cocktails (they are 20 and 17). As parents of special needs children this is just one more thing we need to get used to and to explore but it is not something to fear. It is a godsend to our children and we should see it that way.Remember medication is a helpmate (people should be more functional not less on medication) not a substitute for leaning and therapy.

    aspergers2mom/Elise

    January 11, 2011 at 7:43 am

    • You make some great points here. I’ve known other families who have tried medication, and have had great success. If we are still seeing the same issues in a year or two, we’ll revisit. Her (awesome) Developmental Pediatrician doesn’t agree with putting very young (under 5) children on medication, unless that family is struggling to manage behaviors at home as well. I agree, I’m not very concerned about her attention as she has already mastered her age-appropriate academic goals. She responds very well to positive reinforcement, and she is currently in a program based around that at school. Her anxiety is related to specific things, like dogs, rather than being generalized, so medication probably wouldn’t help in the way that cognitive behavior therapy would, again, when she is old enough to benefit from it. I’m not saying no, I’m saying not now, for us. I do agree that medication can be invaluable, but unless these issues really affect the way she functions, she might just benefit from some time.

      Spectrummy Mummy

      January 11, 2011 at 11:50 am

      • I have many friends whose children with ASD are not on medication because their co-morbid issues are easily handled. Everyone with ASD does not need medication. Medication need like autism, is a very individualized issue.

        aspergers2mom/Elise

        January 11, 2011 at 6:57 pm

  2. She will never cease to amaze you!! Love your writing!! Makes me feel so much less alone!!

    joeysmommy

    January 11, 2011 at 7:55 am

  3. on her own time. that is a perfect description of our kiddos. no amount of coaxing or convincing can get them to move until they are at the point in their head (or body) when they can move.
    She’ll get there and whatever route you choose – medication or not – will be the best choice for her and your family at the moment. As someone reminded me recently, this is ALL fluid. A decision made today does not mean you can’t change in the future. You do what you think is best at that time.

    akbutler

    January 11, 2011 at 8:17 am

    • Very true, who knows what the future holds anyway? We do what we think is for the best, then we hope for the best.

      Spectrummy Mummy

      January 11, 2011 at 11:54 am

  4. What a wonderful story. I’m glad she opened up and let you know what was going on. 🙂

    I had just a couple of thoughts. You described her as your “aloof child”, and I’m wondering if what’s being perceived as aloof isn’t actually something else? When I would ask Coleman what he did at school that day, he’d tell me he didn’t know. He was older than Pudding at this point. I thought it was because he didn’t want to tell me, but really it was because the question was too broad for him to nail down a response to. I know with Julia it was tougher too because of the echolalia thing. You know, I really hated that. Is this the answer, or is she just parroting? I don’t really have a point on that except to wonder if “aloof” is the right adjective.

    As to medication, I commend you and Spectrummy Daddy, weighing all the options. We really, REALLY struggled with whether or not to medicate. You’re right, the issues are complex, and involve much more than just a simple question about one pill. And I’ll echo what Alysia said, nothing is set in stone.

    {{{hugs}}}

    Laura

    January 11, 2011 at 9:18 am

    • Perhaps “disengaged” would be more appropriate. I think perhaps that she needs time to herself when she just gets in from school, and my quizzing her about the scrape came at the wrong time. Clearly she was much more ready to talk later on that evening.

      I think we all struggle with such complex decisions. It is more a case of what is right for the individual, and the family, at that time. No right or wrong here.

      Spectrummy Mummy

      January 11, 2011 at 12:00 pm

      • I used to get from my son “I don’t know, school is over now.” I would find that to be his answer if something didn’t go well that day and he couldn’t process it. Once we started getting a communication log, and I had something to go on, I could press him on it. But it’s still his first answer. But later on in the day, something will remind him of school and it will just come out. Sounds very similar to what you’re struggling with with Pudding.

        akbutler

        January 12, 2011 at 11:29 pm

        • I love the communication log from Pudding’s school. It is picture based, and she fills it out herself now. I’m lost without it on the days it doesn’t come home, but these last couple of nights she has been soooo chatty that I don’t feel I’ve missed anything. Last night she said that in a center time she sang a song about a boat. I’d have left it there, but she proceeded to sing “row,row,row you boat” in full for clarification. Then there were more songs…Another part of this could be that she is just making the most of one-on-one time. Something that doesn’t happen as often as I’d like.

          Spectrummy Mummy

          January 13, 2011 at 7:42 am

  5. How sweeeet and beautiful! You are such a great Mom. This really made me get misty eyed. Pudding is so lucky to have you!

    Mrs. Winterbottom

    January 11, 2011 at 6:56 pm

  6. I am a pharmacist and parent of 3 kids – one officially spectrummy. 1 unofficially spectrummy but ADHD and a daughter brought up in this atmosphere. She is really really hyper too. Nature or nurture? Sometimes if everything is coming at you at once: noise, faces, light, yellow, anything else that takes your attention, other things like interaction take second or tenth place.
    Sometimes meds reduce the number of things taking their attention to a manageable level and sometimes not. Maybe she just needed some chilling time to be able to “process” and if you give her some time after school, this might become her everyday interaction with you. Wouldn’t it be wonderful if you just hadn’t noticed how far she’d come? Now hold onto that and project 2 years forward with these kinds of leaps forward. Meds can definitely help them focus to progress in some cases but your acceptance and support are her anchor. WELL DONE!

    janet

    January 12, 2011 at 3:48 am

    • You know, there isn’t a day that goes by when I’m not reminded that I need to be more patient. She definitely needs her time to chill, now I just have to be patient enough to give it to her.

      Spectrummy Mummy

      January 12, 2011 at 7:45 am

  7. I’m with Pudding on this one. When I get home from work, P will always ask a few questions about my day. I grunt or give one-word answers. Later, after a glass of wine, I then proceed to ramble on about various incidents of the day. Maybe Pudding needs a metaphorical glass of wine, and some time, before she relaxes enough to open up. Either way, I say cheers to her “my way or the highway” approach — although for a mummy it must be frustrating sometimes! (For you I say forget the metaphorical glass and go for a real one 🙂 )

    Courtney Fingar

    January 12, 2011 at 1:21 pm

    • The real glass of wine sounds very tempting (damn antibiotics!).

      Pudding’s “glass of wine” is usually to take herself to the basement, and bounce on the trampoline, or play down there. I interrupted that when I saw her little wound, it is enlightening to see how much she needs to do that to get herself centered. Something for me to remember. Of course, 9 times out of 10 she has her communication folder, and I could have just read what had happened. I’m totally stealing your glass of wine analogy, by the way!

      Spectrummy Mummy

      January 12, 2011 at 3:14 pm

  8. I think that many of us on the spectrum appear to take the “my way or the highway” approach, but it’s really just a matter of perception. To me, the world at large seems to have a “my way or the highway” approach an awful lot of the time: “Loud music? Who cares! Come right in! You mean, you can’t shop with loud music? Or even be in the room? Oh, that’s too bad. What a pity. No, we’re not turning it down.” (There is only one store in my town where they turn down the music for me, and I love them!) Or “Why can’t you come to the pancake breakfast and meet your neighbors? You get overwhelmed? Oh, that’s too bad. No, we’re not going to make any accommodations for you.” It happens every day, because the world is set up for typical people, and we often get the message that we’re being crybabies when we ask them to modify their approach.

    So, we defend our nervous systems as well as we can. And defend. And defend. And insist on what we need in the few places and with the few people who will listen. And then, we can look like we’re inflexible and aloof, but we’re not. I mean, I’m not. I just spend a lot of my time feeling like I’m pedaling uphill while others are going about their business, and so I don’t have the energy for things that others take for granted.

    Rachel Cohen-Rottenberg

    January 12, 2011 at 2:55 pm

    • Yesterday evening as she put on her nightgown for bed, she again related her day’s events for me. Pudding is much more of a sensory-seeker than a defensive child, though like anyone, she can have her moments of being overwhelmed. I think that I was trying to talk to her at the wrong time. When she gets in from school, she likes to bounce and play with her toys. She needs that transition from her day at preschool. When she is in her bedroom, that is the time for talking. I saw the blood and band-aid, and I circumvented all her comforting rituals.
      It is funny, I never even realized it was a ritual until last night when she did the same thing. Her room is obviously her comfort zone. Just a shame we can’t have her speech therapy in there, her therapist would see a different side of her. Even for me her office is too busy and distracting, but it isn’t a good time to make another change there, unfortunately.

      Spectrummy Mummy

      January 12, 2011 at 3:27 pm

      • This is so interesting. I find that for myself as well, evenings are much better for getting me to talk about things, perhaps because everything is very settled down and I’ve had time to recover from the overwhelm of the day. And ritual rocks! I like to shake up routine a bit (just for variety’s sake), but for the most part, I depend on routine to structure the day.

        Rachel Cohen-Rottenberg

        January 12, 2011 at 6:52 pm

  9. I made the decision not to medicate my son for his ADHD when he was younger. It was a combination of being unsure of what was right, unsure of where he needed help most, local anti-medication peer pressure, and my own desire to see how he matured on his own with non medication help from family and therapy.

    He’s wonderful, but it’s been a looong past 9 years. 🙂 Very very patience testing.

    I recently sat down with him and had a more adult [he just turned 15] discussion about what symptoms I see daily, and how he feels about having ADHD, and how he felt about trying an Rx. I told him that I was indeed pressuring him to give the Rx a 2 month trial, but that after that, if he didn’t like the way it made him feel, it would be his choice whether he remains on it.

    Well, it’s been 3 months now, and he says he wants to continue taking it. It’s not a high dosage and I would like to try the next step up, but he says he isn’t ready for that yet. He is seeing benefits himself, that HE LIKES. He does experience side effects – but he is weighing the pros/cons, and making this decision. Yes, I could have put him on meds earlier and saved myself a lot of frustration, and perhaps some of his schooling would have been easier.

    You know, I was a teen mother with him, and I don’t have many decisions with him that I’m proud of or confident in…. however, this has been one of the first. I’m happy I was able to give him that area of ‘buy in’ for his own body and care.

    Now, my daughter [autism] is a different case, and it’s possible that we will need to medicate her in the future. 🙂 Its a totally different scenario. But, I just thought I’d share my little story with you…

    BTW, clinical grade melatonin has helped my daughter’s sleep cycles immensely. Its not a drug and has no side effects, and has now been shown through research to have particularly beneficial effects on autism sleep cycles… If you haven’t tried it – I would definetly talk to your doc and give it a shot. 🙂 Best wishes!! [sorry so loooooong!]

    visionofautism

    January 12, 2011 at 10:09 pm

    • It is good to know, thank you. I love that your son is able to see the benefits for himself, that is really important. We’ll keep watching Pudding, see how she does.
      Pudding went through a spell of sleeping great, and just this week has returned to waking up in the night. I think it is something environmental (the heating system in this house is loud, as are our neighbours), but we have used melatonin before too. If her sound machine doesn’t work we’ll go back to it, she is much better with sleep, like her mama! 🙂

      Spectrummy Mummy

      January 13, 2011 at 7:38 am

  10. […] the comments from my post the other day, Courtney referred to her ritual as the glass of wine when she returns from work. Once her ritual […]


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