melatonin worked for us!
Melatonin Helps Autistic Children Get To Sleep
Reuters Health – Three milligrams of melatonin at bedtime can effectively treat sleep problems in children with autistic spectrum disorder, fragile X syndrome, or both, according to a study reported in the current issue of the Journal of Clinical Sleep Medicine.
“Melatonin can be considered a safe and effective pharmacologic treatment in addition to behavior therapies and sleep hygiene practices for the management of sleep problems in children with autistic spectrum disorder and fragile X syndrome,” the study team concludes.
Melatonin is a naturally occurring hormone, derived from the amino acid tryptophan. The hormone is important in regulating circadian rhythms, or the “sleep wake” cycle, and the reproduction cycle in mammals.
Fragile X syndrome is an inherited form of mental impairment resulting from a “fragile,” or broken site, on the X chromosome. The syndrome affects 2 to 5 percent of those with autism spectrum disorder, and symptoms of autism are common in children with fragile X.
Sleep problems are reported in up to 89 percent of children with autism and 77 percent of children with fragile X syndrome, Dr. Beth L. Goodlin-Jones, of the Medical Investigation of Neurodevelopmental Disorders (M.I.N.D.) Institute at the University of California Davis Health System in Sacramento, and colleagues note in their report.
In a 4-week study, 18 children, ranging in age from 2 to 15 years, with autistic spectrum disorder and/or fragile X syndrome received either melatonin (3 milligrams) or placebo each night for 2 weeks. The children then “crossed over” to the other treatment group for 2 weeks.
Data from 12 children who completed the study showed that treatment with melatonin was associated with significant improvements in total night sleep durations, sleep latency times and sleep-onset times.
Specifically, Goodlin-Jones and colleagues report that the average night sleep duration was 21 minutes longer with melatonin than with placebo, the sleep-onset latency was 28 minutes shorter, and the sleep-onset time was 42 minutes earlier.
“Sleep onset problems at the beginning of the night are very troublesome for children and their families,” Goodlin-Jones noted in a prepared statement accompanying the study. “Sometimes children may take one to two hours to fall asleep and often they disrupt the household during this time.”
“The results of this study,” she and her colleagues conclude, “suggest that melatonin is an effective treatment for sleep problems in children with autistic spectrum disorder and fragile X syndrome, a finding that is consistent with previous studies of children with autistic spectrum disorder and developmental disabilities.”
SOURCE: Journal of Clinical Sleep Medicine, April 15, 2009.
reflective listening/theory of mind
belle struggles with people disagreeing with her when she complains about other students.
Her and I talk frequently about other people’s opinion, some theory of mind stuff about how others can feel differently than she does, how it feels for her when she thinks someone isn’t listening to her and how she can express that she’s not feeling listened to if someone gives their opinion instead of really listening to hers. she’s been watching nanny 911 and sees the nanny mediate between kids and their parents to help the kids express those types of feelings instead of acting out and then we have been practicing together.
It’s best to reflect what belle is saying and try to avoid:
- agreeing that the other student is grouchy or a problem (or “hates the world”?)
- disagreeing that the other student is a problem and saying that “we love him, he’s so sweet”
- ignoring belle (unless reflecting doesn’t help)
- saying that she’s wrong or interpreting it wrong
Saying “it sounds like you feel____” or ” belle do you feel___?” or “sometimes it can seem like_____” or “is he always_____?”
and even asking belle if she’s feeling listened to and prompting her to ask to be listened to if not really helps!
***nanny 911 is also great for talking about how people with different facial expressions and in different situations might be feeling! she’s putting herself in other people’s shoes!
We even had a chance to talk about why she doesn’t like praise and how important it is to hear more good than bad from her teachers and that’s why they praise her so she should think about that when she hears it. We’ll keep working on that one!
para meeting – this is the info that i thought was important to share
Family –Mom and Dad/adoption. Relationship with brothers/girlfriends, sitters. They are for fun, not “work”- outings, movies, museums, treats, shopping etc., but none of that would happen if belle wasn’t on her best behavior.
Behavior at home- happy, cooperative, polite. Doesn’t earn something for everything she does, but every privilege she has has been earned at some point. She does whatever I want her to do (but I try to make her think it’s her idea).
Words have a different meaning to belle- to us “ok” can mean “maybe, whatever, you’re crazy, ok, we’ll see, we will discuss it again later when you’re not so upset, or even no”, to her “ok” means “OK” that’s it.
Complaints- give me clues as to what she’s thinking and feeling, it’s my job to figure out what they mean ( I don’t take them at face value). I listen, not argue.
Theory of mind- can effect belle’s ability to cooperate, comply, show her work, accept praise, sensor her words, or consider the effect her words or actions have on others. She can’t put herself in your shoes, especially when she’s upset.
Presume- her love of learning, desire to get along, desire to cooperate, that she is a fun-loving kid. She is happy when everyone’s happy!
Consistency, rules, routine = happier Maribel
translations-when she says ____, she means _____.
My daughter’s expressive language is quite delayed although, with her extensive vocabulary around her special interests (parasites, black holes, mononoke, and shiba inus), most people assume that what she needs to communicate will come out clearly. the tricky word here is assume. Not a good practice when it comes to dealing with a person with AS.
example -
when she says i’m tired, she could mean…..
- this language is too confusing for me to process
- this is very scary for me
- there are too many new things going on here
- this person i’m dealing with is too nervous and reactive
- i woke up very early
- i didn’t sleep well
- i’m hungry
- my adreneline shot up and has now plummeted
- my blood sugar is low
- i’m feeling excluded and inadequate
- the sensory input is too loud, too bright, too cold, too much of everything
- this is too hard for me, why don’t they understand me, why don’t they listen to me
- i miss my home, my dog, animals
- i’m bored (which has a whole other set of meanings behind it)
that’s a lot considering all she said was, “i’m tired”. Poor expressive language skills can make a child feel like they’re in prison and make the person working with that child very confused and frustrated.
I have a case of the if only’s
I don’t get these very often considering how difficult it is to make decisions regarding what’s best for my daughter or even to know how to plan out a day, but right now i have some regrets about things and it’s weighing on me. She loves Halloween, dressing up and dressing her dog (and horse) up, but she does very poorly with contests. At 12 she has had many experiences with contests and knows that you can’t always win, but has won enough times to think that the odds are in her favor and the judges will think the same way she does (that she’s the best). there have probably been times (in school) that have worked to our disadvantage because people have fixed the results of a contest because they know she likes to win and love to see her happy (and hate to see her angry!) So, to make a long story short, we went to a doggy costume contest and she didn’t win. to her credit, she didn’t make a scene, or get violent- she even waited until we got to the car to express her disappoointment, but the sadness she expressed made me realize that she has a long way to go to understand contests, judges, winning, losing, subjective opinions and the joy of just participating.
on top of that-she chose to be a anime character for halloween and then she was upset that nobody knew who she was. It’s her favorite holiday and it’s riddled with disappointment and frustration- i guess that’s life, but it’s tough when you have no social life and no friends and look forward to a few events that don’t work out as your expect them to.
so what are my “if only’s”?
- if only i had refused to go to the pet costume contest
- if only i had desensitized her to losing a long time ago
- if only i hadn’t let her be a mysterious character for halloween
- if only she didn’t have asperger’s syndrome (ok i said it, but i only feel like that on my “if only” days)
the dog dilemma
we were invited to go with our neighbors to the pet shop to look for a puppy this week (which is one of our favorite things to do). the local pet shop has a great sampling of popular mixed breeds so it gives you a chance to hold them and see what they look like before you decide on the breed you want, but the prices are very high and the source is questionable so our friends were not planning to buy one that day.
Of course, we all fell in love with a puppy. it was the perfect breed, size, gender, temperament- but they wanted $1000 for it! so our neighbors cuddled and played with him and said good-bye to go home and research the breed on the Internet to find a local breeder with dogs for 1/2 that price.
well, my daughter couldn’t believe that they would let that one go. she doesn’t have a good concept of money, but she does understand that there are a lot of different things to consider when getting a pet and that they all have to fit or it’s not the right match (we bought a horse last year and researched for 6 months).
since Monday i have heard almost daily agitated complaints about why they didn’t get that puppy. “It wasn’t sick, it was perfect, it was cute, it was a good temperament!”
the only response i can give her is a prompt to help her come up with the answer herself “but what wasn’t perfect? why didn’t they buy that one?
and then she “remembers” and stops whining and says “oh, that’s right it was a thousand dollars- i hope they find one they like on the Internet”.
many times she is telling herself a story and getting upset about it and all i have to say is, “is that true” and she relaxes and says “no” (it’s much more effective than if i tried to convince her that it’s not true)
and it’s over- we move on
she’ll blossom when she’s ready
Just when i start getting discouraged with my daughter’s progress she seems to advance in leaps and bounds and surprise me with her determination, goal setting, perseverance and optimism. She faces her fears and overcomes amazing personal obstacles and does things that I wouldn’t have expected her to. Asperger’s might be a social disorder, but sometimes a relationship just clicks with Belle that allows her to be her best. I guess you could say that the sun, and the moon and the stars align, but really it’s well planned out environmental and personal strategies that make it all work.
breaking through her shell
There is this hard shell that my daughter keeps tucked around her that makes it so hard to help her. I don’t know if it’s sour grapes, lack of a social filter or too many negative experience eroding confidence, but she doesn’t go into anything lightly. Look at a few of our more recent conversations:
-Are you talking to anyone new at school lately? making any new friends?- Mom, I told you I don’t need any friends!
-How did you like the cinnamon rolls you made at school today?-I thought they should have mixed everything together and they wanted to put the topping on separate and I didn’t like that
-How did you like the new class?- It was so boring
-How did you like the new teacher?- Well. she didn’t really look like someone who would be very nice
Can she just give us a little chance here? A little break?
Can she be a little more easy going?
hmmmmm- How was school? good, they’re getting a new snake!
analyzing behavior
Behavior has always been intriguing and challenging to me as a Mom. I have a nursing background so when my boys were young I often did somewhat of a nursing care plan in order to chart behaviors and strategize ways to eliminate or replace the behavior. My husband and i even took parenting classes so that we would have the same goals and parenting techniques, understood consequences and how to apply them, both natural and logical. If all else failed we would turn to a reward system and some appropriate reinforcers and whala! three happy, loving, respectful, mature young men developed.
…and then I was blessed with a little girl with autism. Consequences didn’t make sense, communication was a huge roadblock, reasons for behaviors became allusive, and reinforcers took a lot of creativity to figure out and usually needed to be changed frequently. Along with that was the curious delema of my daughter exhibiting defiant behaviors at school that she never does at home and loving, trusting, mature behaviors at home that she doesn’t exhibit at school. Mix that with middle school,depression, lack of confidence, inconsistent communication (and academic) skills and extreme passions and you have a pretty miserable child (and school personal)
For years I’ve been asking for staff familiar with behavior analysis- looking beyond the specific behavior to what the function of the behavior is (usually power, fear of failure, to make a demand, to escape or refuse, or for self- gratification) and then finding replacement behaviors that are appropriate.
From what i can tell my daughter’s having 2-3 meltdowns a day in school where she picks some arbitrary reason for not complying with their requests (you need a snake, or my friend is mad at me), then ends up in the office on the floor and gets the aide on the verge of tears. Three staff members take turns dealing with her (she sure knows how to get attention and control) usually without success in compliance, but some deescalation of the behavior. I’m trying to guide the team to figure out the function of the behaviors and to identify, teach and reinforce replacement behaviors, but i don’t really know how to do that myself and I know they don’t, so it goes into it’s negative cycle.
my goal- find the help we need, find the environment that has what she needs and avoids what she doesn’t 9sensory overload), find experienced staff that has seen this before, learn as much as i can about behavior, it’s function and teaching replacement behaviors, and doing what i can at home to teach the skills my daughter needs to succeed in a more uncomfortable, scary environment (how to refuse, how to request, how to compromise)
action- we have a behavioral therapist coming over next week. Continue to work with the school team, request a behavior plan update at school overseen by an autism behavior expert. Get a message and then meditate.
We have to do this for our future, for her future!
cream in the oreo cookie
As a mom of a child with autism and her main advocate I often find myself calming her, explaining her thought process, reactions and feelings, and tempering other’s reaction to her. I have found that it’s best not to let things pass, but to intervene asap to help everyone learn from the situation and to help prevent the relationship from becoming irrepairable. I try not to make any assumptions about how she’s being treated or even that she’s ever reacting. My goal is increased communication, social connection and emotional stability for belle, and increased knowledge and compassion by others.
example:
-I’ll help Belle to relax at the checkout AND i’ll hint to the clerk not to get too personal with her comments about our merchandise.
-I’ll explain to Belle that people don’t always understand how she feels AND I’ll ask peers to be a little more patient.
-I’ll explain to Belle that Daddy is in a hurry AND I remind Dad that we promised a short shopping trip.
-I’ll tell belle that she has to be more flexible AND I’ll tell her teachers that she needs frontloading
-I’ll tell Bellle that she needs to give things a try even if they look too hard AND i’ll insist that her work be modified.
-I’ll explain copyright laws to Belle related to the website that her brother is helping her with AND I’ll tell her brother to be a little more patient and take time to explain.
-I’ll tell Belle that emotions are confusing and people don’t always look happy when they say they are AND I’ll suggest that poeple interact with her with a little more consistancy between their words and expressions.
-I’ll tell Belle that everyone has different opinions and she needs to respect that AND i’ll explain to others that she takes differences in opinion personally – that’s how her mind works.
-I’ll tell belle that people laugh at eachother and some people laugh more that others AND I’ll explain to people that she doesn’t like to be laughed at.
basicallly- she has to live in society and society will have to have some respect for her autism.
