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.

learned helplessness

Encyclopedia of Childhood and Adolescence

Learned helplessness in humans can begin very early in life if infants see no correlation between actions and their outcome. Institutionalized infants, as well as those suffering from maternal deprivation or inadequate mothering, are especially at risk for learned helplessness due to the lack of adult responses to their actions. It is also possible for mothers who feel helpless to pass this quality on to their children. Learned helplessness in children, as in adults, can lead to anxiety or depression, and it can be especially damaging very early in life, for the sense of mastery over one’s environment is an important foundation for future emotional development. Learned helplessness can also hamper education: a child who fails repeatedly in school will eventually stop trying, convinced that there is nothing he or she can do to succeed.

In the course of studying learned helplessness in humans, Seligman found that it tends to be associated with certain ways of thinking about events that form what he termed a person’s “explanatory style.” The three major components of explanatory style associated with learned helplessness are permanence, pervasiveness, and personalization. Permanence refers to the belief that negative events and/or their causes are permanent, even when evidence, logic, and past experience indicate that they are probably temporary (“Amy hates me and will never be my friend again” vs. “Amy is angry with me today”; “I’ll never be good at math”). Pervasiveness refers to the tendency to generalize so that negative features of one situation are thought to extend to others as well (“I’m stupid” vs. “I failed a math test” or “nobody likes me” vs. “Janet didn’t invite me to her party”). Personalization, the third component of explanatory style, refers to whether one tends to attribute negative events to one’s own flaws or to outside circumstances or other people. While it is important to take responsibility for one’s mistakes, persons suffering from learned helplessness tend to blame themselves for everything, a tendency associated with low self esteem and depression. The other elements of explanatory style–permanence and pervasiveness–can be used as gauges to assess whether the degree of self-blame over a particular event or situation is realistic and appropriate.



Some Tony Attwood words of wisdom

Tony Attwood: Autism could be viewed as the behaviours that the child uses to cope with life. We search for a compromise between the child’s needs and the family’s needs. There needs to be times in the day when the person is free to be autistic but other times when they need to conform to our expectations.

Anne asks: My five-year-old son has mild Asperger’s. My question is how to bring him back when he loses control, ie does not seem to understand the gravity of a certain act.

Tony Attwood: Quick hints:

1. For the adult to try and remain calm.
2. To try and get the child to calm down and relax without talking about the problem that caused the outburst.
3. Recognise and acknowledge the child’s perspective.
4. Be logical in the explanation of what is required.

He also added that it helps to give the child something to look forward to.

facts about restraints

According to non-violent CPI and your own procedures, physical restraint should only be used when a student presents an imminent physical danger to themselves or others, only as a last resort after less intrusive methods have not been effective, and only by properly trained and supervised staff.  Under the Michigan Department of Education Standards for the Emergency Use of Seclusion and Restraint, seclusion for middle school students should last no longer than 20 minutes and restraint should be used only under emergency situations and only if essential.