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.
my favorite books
at the moment I’m relying on:
-the myth of laziness by mel levine
-asperger’s syndrome- by tony atwood
-the explosive child-by ross greene
-your ten-to-fourteen year old-by louise bates ames
-asperger syndrome and adolescence- by teresa bolick
-practical ideas that really work for students with asperger syndrome- by kathleen mcConnell
-just give him the whale- by paula kluth
-can i tell you about asperger syndrome?- by jude welton
-life is short -wear your party pants- by loretta laroche
-
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
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.
i learned something new!
It amazes me how interesting and puzzling autism is and that i can continually learn more about what it is, how it effects my daughter and our family and new strategies to try.
what did i learn last week?
- shaping techniques that can be used to modify behavior (I still feel like you have to be an expert to do this, but we’ll see)
- how to put a less desirable behavior on cue and then work to extinguish it (can we put refusals and complaints on a schedule?)
- how people with autism can have trouble with revisualization which effects their understanding of what the final results of something might look like preventing it from being attainable.
- it’s necessary to set limits with verbal fascinations (well, for my own sanity i’ve already done that)
- that autism impacts abstract reasoning and visual perceptual skills along with what we already knew (social, communication, auditory processing, behavior, and sensory processing)
What will i discover tomorrow that will help me get through another day?
It takes a village
I’m very thankful that i’m not alone in raising my special needs daughter and I appreciate most of the advice and help i get. My daughter lost her favorite teacher this summer and I not only had to deal with my own fears, disappointment and frustration, I also have to pull myself together and start strategizing her transition to the new teacher. Thank God I have many poeple in my life who care about us and can guide me through this- all i knew was that i was not telling my daughter anything concrete until a plan was layed down. I planted a seed by saying “you know, your teachers might be different this year, i just don’t know who you’ll get” and let it process for a while. Then I started listening to advice…….
my daughter (the real expert)-”I do like a lot of teachers at my school mom, I’ll try to be brave” and “I need lots of school supplies and a new lime green backpack.” You go girl!
my husband encouraged me to get to know the new teacher as soon as possible and i was able to attend a full day autism training with him. Great idea!
the principal of the school gave us Belle’s schedule early along with the list of students in each class so that we could start frontloading her and preparing her. She also invited us to visit the school during the week before class starts, and gave us locker, “safe place” and classroom options. Very helpful!
the autism expert encouraged me to invite the new teacher on a home visit so he can see Belle where she is comfortable and happy. I wouldn’t have thought of that- thanks!
my good friend suggested that i wait until we have the new relationship established before I tell Belle that her old teacher has moved on. Very sensitive suggestion- thanks!
the “old” teacher is offering to take time off of her new job the first two days of school to help guide my daughter into her new schudule and relationships. thank-you, thank-you, thank-you!
my sisters listen to me- thank God!
they say that the parent knows best- well I often refer to my village of experts before i make any decisions and then i try to trust that the universe brings us what and who we need.
medications
Well, all i can say about meds is that i’m very thankful for them and respectful of them. In autism i’ve learned that you have to be very careful of dosages and side effects and have a very good working relationship with your child’s doctor. Finding a happy medium between positive effects and side effects is very hard since all the med options effect the nervous system, but they are worth trying. Take notes, keep charts, discuss side effects on a timely basis and inform people working with your child of the effects that they might notice.
my daughter could not tolerate any stimulants, but we’ve had some luck with anti depressants and a low dose of a mood stabilizer. there are many options- make informed choices.
defensive
it’s going to happen to you one day- Belle is going to accuse you (or if you’re a teacher it might be one of your favorite students) of being “mean” or “cranky” and you are going to take it personally and get on the defensive.
Remember-it’s not about you, it’s about her and how her mind works, how she is percieving and processing information, and interpretting what happened. And… sometimes people are inadvertantly mean, she is treated unfairly, and she exaggerates her feelings.
what can you do? reflect her feelings, be understanding and respectful and see how everyone can learn from the situation.
If she interprets not being asked to partner with someone as “being mean” then listen, problem solve, interpret her feelings in a positive way and check back to see how the solution options worked.
levels of compliance
there are several levels of compliance that we see with belle.
1) passive compliance- I make a request and she says “ok” with a smile even:) what i’m thinking: thank God. what i say -”thanks for cooperating” “now we can do such and such”
2) compliance with baggage- I make a request and she moves in the right direction , but i have to hear complaints “it’s not fair” “you’re the worst parents ever” “I hate this.” what i’m thinking: thank God we have forward movement. what i say- “ok, thanks for cooperating” and try to ignore or set limits with her remarks.
3)unacceptable compliance- I make a request and she says “no” or “make Me”. what i’m thinking-Oh man, i have to tread lightly here and strategize well or this will backfire. What i say- maybe nothing at first since she is getting agitated and we have to calm things down. it’s not time for a lesson or a power struggle. If i do talk i might just set limits “I’m sorry, that talk is not allowed” “we need to move forward”
luckily, most of my requests are met with passive compliance, but i know the others well and we discuss them with her when we’re both calm and in very, very good moods.
