Belle instruction manual

Likes adventures not surprises
Likes to be greeted with a smile and hello but not stared at
Likes to talk about her favorite movies but not drilled with questions
Likes to sleep in hotels but needs a pile of pillows around her to make a nest
Loves museums but goes quite quickly through them and then wants to shop or rest
Loves dolphins but can find their squealing painful to her ears (will wear her ear covers)
Loves to watch tv but only likes animal planet, fhv, or shows about ghosts
Loves Chicago but might not like the sears tower
Excited about medieval knights but might be disappointed if there isn’t a dragon or if it’s too loud
Loves to eat out but doesn’t like spicey food-pepper, BBQ etc
Loves the natural history museum but has not been to the science museum
Likes space and the body but not electricity (static)
Likes to be invited not bossed
Likes to be communicated with not scolded
Likes to be with others but not if they take too long (at restaurants and museums)
Loves to swim but not if she’s cold or tired
Likes to walk but gets tired fast and easy (and needs to see the destination)
Likes to keep busy but wants choices and to know what’s coming next
Likes a schedule but likes it flexible
Wants to get along but if she’s upset she might say something mean
Wants to tell you what she’s thinking and feeling but can’t always find the words
Wants to be the leader but doesn’t usually get the chance
Wants to talk about sea monsters but wants you to believe they’re true

Loves physical humor (funniest home videos) but doesn’t like to be laughed at if she falls

Likes to shop but likes to have the most money – so if nobody has money she’s fine

Likes lots of attention but only when she’s looking for it

Likes to tease but not be teased

Likes choices but not when she doesn’t like the choices (is disappointed or frustrated)

Wants to have fun, get along, cooperate, but sometimes it doesn’t work out that way
Wants to do everything but might need some down time (rest, tv, gameboy, shopping)

her cup is 10% empty- and that’s often all she sees

this is how last night went-

4pm- woke from a nap -happy

ate dinner-didn’t even like 10 % of what i made:)

4:30 -at the barn, rode bareback-happy. got to watch some jumpers, very relaxed for an hour and then complained that another horse stole some food from hers and that someone at the barn was a little crabby -”they were kinda stern, what’s wrong with them?” ( they were negotiating the sale of a horse that wasn’t going well, but she thinks everything’s about her)

6pm -long drive to a dog obedience class, happy in car watching utube on my iphone

7pm-loved the dog class. her dog was the most well behaved, she learned the commands right away, lots of great breeds there (husky, german shepherd, jack Russel), lots of great doggy tips

8pm -leaving, a man in a wheel chair needed to get past her and said excuse me, but had difficulty saying it nicely -”he was rude, why does he have to talk like that, i don’t want to go to that class anymore, he shouldn’t talk like that” (he seemed to have severe CP and unable to move his face muscles, but she holds him to the same standards as everyone else)

8:30-”it was awful, i’m never going to that class again, why was it like that…………

all I can do is to continue to remember the positive, let her vent,remind her to use her calming techniques (hug her dog), make sure she has her meds, meals and a good nights sleep, help increase her perspective taking and ToM skills, give her points for letting people “be human” and noticing when someone was nice or something went well. ignore the negative talk as much as possible and make sure that i’m not dwelling too much on the negative also.

embarrassment!! Is it a good thing?

Well, there was a time when my daughter didn’t care what others thought, so now that she’s self-conscious to the extent that it could even bring her to a melt down if someone sees her make a mistake or get hurt, it adds a new challenge to our life-the need to comfort while reigning in the anger and containing the “crash”.  It is quite ironic that embarrassment ends up drawing more attention to her because of her behavior. Maybe someday this will motivate her to hold in her anger and frustration, cooperate, use calming techniques, maybe even laugh it off- be thick skinned, be human!  Could this low level “peer pressure” grow into motivating her to try harder, learn more, be more mature, be more positive? We can only hope

this is what happened-

after 6 years of horse back riding, 2 years of cantering, 6 months of jumping the inevitable happened- her horse refused the jump. she’s seen it happen to many girls and many horses, it’s pretty typical any time the horse is tired, the rider hasn’t given the right cues, the horse hasn’t picked up enough speed for the jump, or there are too many distractions in the arena. It can mean that the horse is being stubborn or, as in this case, is protecting his rider in an unsafe situation.  The horse is communicating that something is wrong and stops short. It can be dangerous, we’ve seen riders be thrown off, although this is rare. Usually, and this time, the rider (maribel) was just startled….. and scared, then embarrassed, and then mad!!! at the horse, at me (?), at the trainer, at the other girls looking at her, and at herself. We’ve seen other riders work through this scenerio- you scold the horse, turn him around and do the jump over to teach him that you are the boss and he can’t just decide which jumps he will and will not jump, then praise the horse when he does the jump successfully, then you move on- it should be a nonevent. she knows this, but couldn’t pull herself together enough to do it.

she was tired and hungry so for this to happen at the end of her lesson only added to her being physically exhausted.

this is what i did-

gave her privacy for her tears (asked other riders to give us one side of the arena)

gave her a surgery drink (her blood sugar gets low when she’s upset and i keep something on hand)

listened without criticism

set limits if she started to swear or be rude, or if she was scolding or hitting the horse  “not allowed!!”

gave choices (ride appropriately or get off)

had her move forward- having the horse walk slowly seemed to comfort them both

calmly and privately left the arena, untacked the horse and left (she went to the car on her own to rest)

spent lots of time assuring her that her horse was protecting her from jumping when he wasn’t ready

Now we have to work on rebuilding trust, it will be a slow road and she might stop jumping for a while (she loves it, but now she’s scared). We will also write out a strategy for how she can handle it better next time.

and then we can talk about how it felt to be embarrassed and how to handle that uncomfortable feeling! growing pains seem to be so much worse when you have autism, but i believe the horse helps build confidence and will eventually motivate my daughter to handle these new emotions and her reaction to them.

like my husband said- “at least she cares what others think!”

another service dog visit -one month down, 5 to go

Every person that comes into my daughter’s life needs to be educated about HFA/Asperger’s and her. It’s exhausting, but can’t be avoided. she does some advocating for herself, but unless we get involved the process of mutual respect goes very slow and relationships can deteriorate quickly.

I started some autism training with the dog trainer…..this is what i wrote:

As we go through this adventure with you I know it won’t be without great challenges. If maribel didn’t have severe anxiety and communication and social deficits we wouldn’t be looking into a service dog for her. After you left on Wednesday Belle seemed happy for about an hour and then complained that you were “mean” to her during the walk. Please don’t get defensive about that word, she uses it if someone has a flat affect, has a different facial expression than she expects, says something that makes her feel that they are teasing or making fun of her, or if they’ve denied her something she feels she has the right to have (among many other things). I plan to stay close from now on so that i can monitor, translate and clarify misunderstandings. Dave and I also plan to spend as much time as possible informing you of what we understand about Maribel to help this process run smooth and help us work as a team. I think maribel was reacting to you not telling her which dog will be hers and what that dog’s name will be. It’s a very long time for her to wait for something that she can’t see the logic in (you have all these dogs!)

On your way out the door you also said something to both of us that made me realize that you don’t understand Belle’s communication difficulties- “you got your dog fix”- she had absolutely no idea what you were talking about. She wanted it to mean “you got your dog”, but could tell that you were not ready to say that so she was confused and bewildered. I translated as well i could, although it’s basically a drug related term so it was hard for me to put it in words she would understand (a little like an addiction?). She doesn’t understand most things that someone just learning english wouldn’t understand- slang, idioms, sarcasm etc.

do you think in 5 months I can be a dog trainer and she can be an autism advocate? that’s what I’m planning.

ask what you can do for your school

I’ll admit it, i’m a demanding, involved, sometimes 3-5 email a day parent.  It’s hard not to be when your child is not working up to her potential emotionally or academically, the staff has limited experience with a verbal (and mine is extremely verbal) child, and I’m getting crisis calls on a weekly, sometimes daily basis. So any attempts I’ve made to back off have backfired and I’m back to coaching, teaching, running to the school to put out fires, and sometimes complaining.

BUT- i would never complain and demand without balancing that with doing whatever I can to make the school staff’s life easier. I don’t like to bribe, any more than I want them to do that with my daughter, I just believe in mutual respect. I’ve never been a teacher, and I can’t even imagine the challenges they face in a center program for students with autism. We have very high standards and expectations,  but we as parents also make ourselves very knowledgable about our daughter and her disability. whatever I expect of the teachers, I learn myself and I make myself available to help the staff learn- I offer inservices,  buy training material, and bring in consultants. I also send in and or donate whatever I can to help make their learning process and job easier.  I also make a point to thank and compliment staff members that show respect, professionalism, care and concern, and who make an effort to use new, effective strategies- getting out of the rut of an old system.

It might seem like I’m complicating things, but the fact is things are changing and the “old ways” are not working and haven’t proven effective in helping these students succeed in school, get on track academically or lead independent lives. I’m doing what i can to facilitate that change and support the staff as they go through their growing pains.

scolding-don’t do it!

a letter I wrote to a para-

I’m writing so that I can increase communication with you and to help you better understand the effect scolding has on Maribel, and any child with high functioning autism or asperger’s. these students are very sensitive, hard on themselves, easily embarrassed and have lived a life of disappointing others because of the selfishness that is central to their disability. The more upset and anxious they are, the more self centered they become. this can seem very confusing, I’m sure you’ve seen maribel be very caring and compassionate. but when she’s triggered she loses most of that and she would much rather be the person that everyone likes- it’s just that her disability doesn’t allow that and scolding her only makes it worse. would you tell a blind person to try harder? she’s like a blind person in that she can not put herself in your shoes, or see your perspective, especially when she’s upset, tired, hungry or a cute peer is around.

please read the excerpt below related to students with ADHD who have similar difficulties and let me know if you have any questions:

So if the child spilled milk, is it time to scold the child? Or is it time to look at the child to see how their face fell and then say, “Oh, honey, I know you feel bad, but we all make mistakes.“ So think of the difference in the response with the spilt milk. You could comfort the child and say, “It’s okay.“ Now, how different will that child feel versus if they got scolded when they already feel bad?

So that becomes a very critical issue with ADHD, because these children as we understand more and more, feel so bad about themselves already that many of these kids hardly need scolding. They need comforting and then holding out the hope: “You can do it. I think you can do it and don’t feel bad. And I know you felt bad that maybe you lost your temper and you broke your sister’s toy, now you feel bad about it. I know you feel bad.“ Well, that would be a very common scenario. A child would actually do something, feel bad about it later, but the parent might only respond to the event, say the breaking of the toy, not realizing the child had a very set of mixed feelings about the whole thing. So do you discipline or do you support and say, “Look, I think you want to be good, and I’m going to help you do that.“ So holding and folding has to do with when you scold and when you support and how you do that in an understanding way for each individual child.

thanks

A Pick Me Up

I’ve been pretty negative lately- with good reason, but it’s been going on too long.  There’s only so much worry and regret I can take. What can i do to move on?

• trust someone- pick one or two people to place trust in again and let some of the responsibility for my daughter’s welfare go
• ignore the set backs- they are small and short lived, stop dwelling on them
• notice the wonderful side of HFA- the music, the animals, the love, the laughter, Halloween!
• be optimistic- we will move on, things will get better, she will get motivated to learn and cooperate
• love- my husband, my kids, my life, myself
• focus on my blessings- my marriage, my health,my 3 wonderful sons, my horse, my daughter’s giggle
• talk to my sisters and see them as much as possible
• visit my parents- they are both near 80 and happy and healthy. Amazing!
• paint, create, do something that brings beauty to the world
• work out- do something physical
• write- blog, journal, do my poetry homework
• forgive myself, let go of regret
• call a friend- one who understands and one who doesn’t give a heck (we can talk about something besides autism, like vacations or hairstyles)
• help someone else- cook a meal, run an errand, call someone who hasn’t been feeling well
• watch a sitcom!!! well, maybe more than one!

I should feel better after all that, if not there is nothing wrong with taking a nap and giving it another day.

PTSD

According to Tony Attwood, many of our kids can and will experience post traumatic stress disorder due to bullying or ahrrassment by peers or school staff.  My daughter never seemed to have been bullied by peers, although being shunned can be even more hurtful. There is some evidence, however, that teachers and other school staff have caused emotional trauma because of their lack of knowledge of her disorder, lack of appropriate services and support, and blatant mistreatment or comments (yelling, scolding, threatening, not allowing her to talk about her special interest).

Get as much info as you can and get your child the help they need.

http://www.helpguide.org/mental/post_traumatic_stress_disorder_symptoms_treatment.htm

Symptoms of post-traumatic stress disorder (PTSD)

Following a traumatic event, almost everyone experiences at least some of the symptoms of PTSD. It’s very common to have bad dreams, feel fearful or numb, and find it difficult to stop thinking about what happened. But for most people, these symptoms are short-lived. They may last for several days or even weeks, but they gradually lift.

If you have post-traumatic stress disorder (PTSD), however, the symptoms don’t decrease. You don’t feel a little better each day. In fact, you may start to feel worse. But PTSD doesn’t always develop in the hours or days following a traumatic event, although this is most common. For some people, the symptoms of PTSD take weeks, months, or even years to develop.

The symptoms of post-traumatic stress disorder (PTSD) can arise suddenly, gradually, or come and go over time. Sometimes symptoms appear seemingly out of the blue. At other times, they are triggered by something that reminds you of the original traumatic event, such as a noise, an image, certain words, or a smell. While everyone experiences PTSD differently, there are three main types of symptoms, as listed below.

Re-experiencing the traumatic event

• Intrusive, upsetting memories of the event
• Flashbacks (acting or feeling like the event is happening again)
• Nightmares (either of the event or of other frightening things)
• Feelings of intense distress when reminded of the trauma
• Intense physical reactions to reminders of the event (e.g. pounding heart, rapid breathing, nausea, muscle tension, sweating)

PTSD symptoms of avoidance and emotional numbing

• Avoiding activities, places, thoughts, or feelings that remind you of the trauma
• Inability to remember important aspects of the trauma
• Loss of interest in activities and life in general
• Feeling detached from others and emotionally numb
• Sense of a limited future (you don’t expect to live a normal life span, get married, have a career)

PTSD symptoms of increased arousal

• Difficulty falling or staying asleep
• Irritability or outbursts of anger
• Difficulty concentrating
• Hypervigilance (on constant “red alert”)
• Feeling jumpy and easily startled

Other common symptoms of post-traumatic stress disorder

• Anger and irritability
• Guilt, shame, or self-blame
• Substance abuse
• Depression and hopelessness
• Suicidal thoughts and feelings
• Feeling alienated and alone
• Feelings of mistrust and betrayal
• Headaches, stomach problems, chest pain

on death and dying

Unfortunately we have had too many experiences with death this month. Our sweet, cuddly bunny died when i took her in to get spayed, our niece’s cute, silly boston terrier died, our friend’s dog died of internal injuries, and sadly, another autism student at my daughter’s school died from a seizure disorder.  We’ve shed a lot of tears and then tried to find ways to work through our grief and fears around losing what we love and take for granted in our life.  There are so many dimensions to the process- it’s not a one shot deal, it’s a way of life. **keep in mind that, for a child with autism, a pet can be their only friend**

This is what helps my daughter-

• talking about the fragility of life, causes of death, God’s role in life and death, the realities around death
• talking about what happens to the body(she wants all the gory details) and the soul after death
• discussing our beliefs in heaven, reincarnation, afterlife (she loves the supernatural and ghosts and I don’t deny her that option in her beliefs- it’s a comfort to her)
• share values and beliefs about God and death- including how bad things often happen to good people and it’s nobody’s fault
• rituals- sending flowers and notes, attending the funeral, talking to friends and family, getting a memory item for a pet
• looking at pictures and remembering special things that we liked about the person who died, seeing them throughout their life, appreciating the unique person (or pet) that they were.
• and taking lots and lots of time to grieve…… it’s ok to be sad, sadness comes back again and again, it’s ok to talk about the person who died, it’s ok to get another pet even though this one might die too, it’s ok to miss what we loved about that person or pet, and it’s really good to talk about what we learned from the event and the person who died (was he brave, was he kind, was he funny, did we learn about love and acceptance?)

I’m not afraid of death and I’ve always believed that it’s better to have loved and lost then to never have loved at all- that’s what i teach my daughter. We have also learned that you never know when you will lose the people or pets you love so we need to let every moment count and show all the love we can while they’re alive.

My daughter may have autism, but she understands all these concepts and is more compassionate, loving and open to talk about death and dying than most adults I know. To me, that’s a very healthy way to live.

forgiveness and letting go

I work hard to teach my daughter forgiveness. She holds a grudge and keeps hurt feelings toward someone for a long time. I teach her that I expect her to “let it go” if she perceives that she’s been wronged, I demo “letting it go” if she notices that i’m frustrated with her or someone else, and I teach others that, although Belle often makes bad choices in dealing with anger, if they tell her that they can “let it go” and move on everyone will be much happier and she’s learned an important social lesson. We’re all human, we all make mistakes, we can all give each other some slack, and we can learn from each other.