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!”

lessons learned

my daughter and I went to a funeral yesterday for a boy a few years older than her who died from a siezure. she didn’t know him very well, but had seen him over the last year at the bus and in the “sensory room”. From what my daughter could explain to me the boy was much less verbal than her. Being new to the school and the autism program she’s just starting to understand how to communicate with and respect the strengths and individual qualities of the kids who don’t communicate as well as she does (we don’t use the term “low functioning”) so she hadn’t interacted with him much. she was quite shocked and upset about someone her age dying. In her own spiritual way she talked a lot about reincarnation and what animal he might be now.

then she said something to me, and eventually to everyone she encountered- “you know he taught me a good lesson…..i should be nice to everyone in my life because you never know when someone will die, you never know if it’s the last time you’ll see them”.

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)

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.

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.

I believe

• I believe in the power of attraction, visualization and getting what you need from God and the universe
• I believe that someone will come into our lives that is knowledgeable, loving, kind and confident
• i believe that belle will find a way to give her gifts to the world
• i believe that belle will find someone who will see her intelligence, humor, love, passion and creativity
• I believe that we can find (or create) a school for belle that will let her shine and be at her best
• I believe that Belle is in our life to change the world
• I believe that we will always have friends and family that will stand by us and support us

I believe that God will bring us who and what we need- It has always happened before, it will happen again

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.

mom’s view/ dad’s view

me- belle has so much trouble figuring out what other kids are saying. she invites them to watch a movie and they say ok, but don’t smile so she thinks they don’t want to or that they don’t like her or that they don’t like the movie. It’s frustrating to have her so confused when words and facial expressions don’t match.

Daddy- at least she cares how they feel- for so long she didn’t!  she’s making progress!

me-well, that is true.   i agree, let’s celebrate.

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.