looking at people differently

My daughter has had a hard time with paras (paraeducators)- too many of them have been negative with her-scolding, threatening, redirecting, even restraining. It’s hard to trust someone who doesn’t connect with you, respect you, understand you.

things are changing….. through education, support, a new PBS and ABA program, an adjustment period, and some huge successes on all sides the para student/relationship has blossomed into something  therapeutic, productive and even fun!

In the midst of this progress one of my daughter’s classmates died of a seizure and she had the opportunity to see the paras in a different light- as humans with feelings and love.
After the funeral she held my hand and said, “mom, the paras were so sad, they really cared, they’re really gonna miss him….. I guess they’re not just in it for the money!”

home schooling

i never really wanted to home school and this break from school was only supposed to be for a few days so i didn’t really prepare for my daughter to be home for a month and now i find myself with a bored 7th grader who is craving interaction with anyone besides her mother and whose anxiety over the unknown is rising.

what can i do:

• get a schedule in place and inform her of what is going to happen when
• set up some social events- not easy when her friends are busy with school and after school activities until 5pm (grandma?)
• take her to see one of her brothers- they are always a Godsend
• teach her something new
• get her out of the house as much as possible
• get myself some time away so i have the patience for these long days and so I don’t get resentful (just one yoga class a week is all i ask for)
• ask for help
• get help
• schedule up as much as i can with tutors and lessons and therapies and doctors etc
• think positive- it will all be behind us soon
• help her with calming techniques and coping mechanisms to get her through her own anxiety and frustration about being a child without a school
• get some laughs in-funniest home videos?
• teach her some skill to increase independence in her new environment
• meditate

the sad thing is that there are so many kids with autism who don’t fit into a program or a school and who have to be home with their parents way too much. It can’t be good for the child or the family- it’s like a codependency that inhibits everyone’s growth. that’s just the way I’m feeling about it right now, in my family, with my child. We need to move on.

the curious incident of the snake in the school

Well, the snake is missing!!! the teacher arrived in the school today to find the cage empty!

Belle is not in school right now because we’re transitioning her to an autism program so when the teacher emailed me this morning and let me know that the snake disappeared I told her in hopes that she would stop asking if she could take it to the new school and we could move on. Instead, she got quite agitated worrying about “kenny’s” welfare. She insisted that she go to the school and help look for him. I told her we would have to wait until after school, but 30 minutes later when i left her with my sister while i went to the dentist she walked up to the school (with my sister keeping pace with her and trying to talk her out of it) and went to the office insisting that she had to help find “Kenny”. I actually thought that the teeth scraping i had just gotten through would have been the low point of my day, but when i got back in my car to see 3 texts and 4 missed calls i realized i was wrong. I consoled my sister and told her i would be right there. fortunately my sister started laughing so hard from the crazy situation she found herself in that she started to cry and Belle got concerned about her aunt and agreed to come home. So when i arrived at the school i was greeted by a very cooperative, calm child who agreed that Kenny was probably out hunting mice and having a good old time. She slipped back a few times today into worry for the snake (very much like the boy in the “incident of the dog” book) thinking that he must have been stolen and that she was responsible for solving the crime, but then we moved on to the new concerns.

She actually thought that she would have to put on her detective’s hat and solve this “crime”

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

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!

Conversations with Belle- by Dad

What is a Canadian?

Belle had seen something in a cartoon about people from Canada. Keep in mind she is 12 years old. “What is a Canadian?”, They are from Canada I told her. “Do you know where Canada is?” I asked, She told me no. She was surprised to learn that she had been there, that we hosted people at our summer home from Canada and that I look at Canada every day from my office window across the Detroit River.

Basic things like this can be taken for granted by us, or not put together by her from school last year. However, the good news is Maribel is asking, inquisitive and learning.

What is a Bad Word?

Today Belle wanted to know what a bad word was, who decided words were good or bad or what is really  wrong with these words? “Are people afraid that if you hear it you will say it?” she asked. At times, Belle seems to focus on something like this and will ask over and over – what is a bad word and what are Peggy and I really worried about? Recently she has asked about violence and horror also. “Why can’t I see it on TV? Are you afraid I will do something?” she asks.

On the surface it seems like an obsession. Questions over and over, from every angle. A deeper view would be is that Belle is asking pretty profound questions about wrong, right, morality, control, self righteousness and the like. She is trying to understand the crazy world around her. Even with her speech and language issues – she comes across unanswerable questions. “Who decided a swear word is a swear word?”  I sit back and say that is a good questions.

The influence of TV

Maribel doesn’t have any children in the neighborhood or school that call on her to play. Most of her days in the home are watching TV or working on the computer. We try to get her out and about including her daily horseback riding. That said, she watches a lot of Animal Planet and likes cartoons like the Simpson’s. She is focused on the age rating of shows and is constantly trying to understand why we restrict or limit her access to violence and language. “What are you afraid of Mom and Dad?, Just because I hear it, doesn’t mean I will say it or do it”. I talked to Belle about the influence of TV – whether it be ads, shows or movies. We talked about how sometimes people learn things on TV that seem cool or make people laugh, but are really inappropriate. She seems to struggle with our role as parents and is trying to understand why we do what we do. “What are you worried about Dad”. The answer is the world!

Music

Maribel listens to her IPOD everyday. When we are in the car, she has to use it when we drive. She is currently listening to Worship Jams. “Dad – what is The Savior? What is the Son of the Lord?”  Maribel didn’t go to CCD instruction like our boys. Getting her to sit, listen and memorize was out of the questions. She also doesn’t like Church because of the singing and load noises. So I explained about Jesus and his relationship to God. “Is God a spirit or a person? Is he the alpha boss of all the people? Does he have white hair? How did Jesus die and come alive?” and then “hey, Dad, I need to learn more about this stuff”  I never stop being amazed about what she can learn and how/where she will pick things up

Reincarnation

Yesterday I was trying to get a hug from Belle, which can be a challenge. I asked, “Belle – how come the dogs get a better hug from you than me?” – “Well, Dad, maybe after you die you can come back to earth as a dog and I will give you a hug”

Grandma

“Grandma is getting older”.  This was prompted by me telling Belle that her Mom turned 50 this month. “Is she going to die soon?”. she asked – I clarified “are you talking about Mom?” – “Yes” I explained that 50 is young and her Mom could live another 50 years to which she replied, “then Grandma is getting old and I don’t want to lose her. And who is going to record my favorite shows when she’s gone?”

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.

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.

animal planet

thank God for animal planet!! maribel watches it daily and for many hours. she loves the emergency vets, surgery, dog training, breed info, animal care, animal rescue/neglect cases, exotic and wild animal info and of course, funniest animal shows! It provides anytime information, education and entertainment and can be a best friend when the hours of loneliness get long.

wow- that was a quick change of heart!

belle’s horse spooked a little and it scared her- this is how she got over it

thursday pm- belle-i hate him, i hate all horses, i’ll never ride him again, he’s the worst, he’s the devil, sell him, sell him.  my response was to listen, comfort and set limits by stating the facts (he’s a horse and something startled him and he reacted to protect you- he’s part of our family and we wouldn’t get rid of our dog or our kids or our horse- not allowed to call him the devil)

wednesday am-(mornings are always much more positive then evenings) belle-i’m a little sore and it’s his fault- he’s a demon, he hurt me. my response was to offer aspirin and a heating pad and reassurance that the body heals fast and that anyone can get hurt doing anything- walking, driving etc. I also added that when her brothers got hurt i used to blame the ground or the table they hit since that was what actually caused the damage. I also reiterated that he’s part of our family and she was not to talk bad about our horse

wednesday afternoon- we went shopping for a webkin that she had saved up for and we got one of those window periods that allowed us to talk about the incident (that he was just being a horse and was actually quite gentle with her).  I also offered to buy her an extra webkin if she could look at the situation with more understanding. She took a deep breath and said -ok i forgive him and i learned a very, very big lesson.

She went on to ride him cautiously the next day and will be tentative, but not angry for a while now -whew, that was a close one