Hope. Fail. Wish. Cry. Pray. Wait.

I was sent a prayer that was attributed to a Saint today, and of course I had to research it; please don’t forward me stuff, seriously. As it turns out it was actually a New Age well-wish type thing, but in doing my brief research, I did find another prayer, and while I think I was a little embarrassed*** to post a prayer on my blog it spoke to me:

It was written by St. Teresa of Avila who lived in the 16th century:

Let nothing disturb thee. (Nada te turbe)
Let nothing frighten thee. (Nada te espante)
All things pass away. (Todo se pasa)
God never changes. (Dios no se muda)
Patience attains all things. (La paciencia todo lo alcanza)
He who has God lacks nothing. (Quien a Dios tiene nada le falta)
God alone suffices. (Solo Dios basta)

And today it spoke to me, because it feels like there are so many things out of my control in my life right now. I have a little, or even a lot of input into each, but the final way things go is dependent on someone else, and I do not like that feeling. I want to shape or fix or make happen Jake’s fall placement for school, my precocious daughter’s defiant behavior, my husband’s need for a challenging career, the ever-growing amount of paperwork, the budget cuts, my son’s toilet training, our summer camping trip, the amount I pay Verizon wireless each month.

When I visited a possible new school for Jake last week I had an amazing feeling of hope and

optimism for nearly 24 hours, from the time I made that appointment in the afternoon, then the next morning through the interview and the visit to the classroom and the entire drive home. I felt buoyant through phone calls and emails… until I got an auto-response from the Director of Special Ed saying she was out on vacation (and therefore unable to give approval for Jake to be evaluated by the school).

My day was so carefree. It was shocking how much I got done the night before that visit, how pleasant nearly every moment was, how much easier it was to deal with a pile of dirty dishes, or a child who would not go to bed. Everything felt smooth and shiny. I was saddened to figure out just how much Jake’s development and school placement has been weighing on me. That it weighs on me every day and impacts everything I do. I also realized that people who don’t experience this feeling really do have different lives, which I like to pretend isn’t true. It must be so much easier to go through life like that. I almost remembered that feeling I used to have when Descartes had just finished business school and we were newly married and I had this fantastic career thing going (one that paid me): I used to be invincible. And then that damn auto-responder kicked back that out-of-office message and I was left again with that sinking feeling. And again our fate is left to someone else, no matter how many emails I write, I don’t get the final say.

I just got an email from another possible placement who welcomes me to visit the school but warns there are no Fall placements available, because of course this is all so last minute.

back to my other business now… wish me luck with the patience part.

***I don’t think it’s a secret that I consider myself a Christian, that I have taken a few leaps of faith, and have even officially joined a church (thanks sister ), but I think sometimes I am embarrassed by faith because I cannot pin it down or prove it with science. I want to have faith, so I choose to, or I try to be open to receive that gift, but it doesn’t always sit well with me, and sometimes I am also quite convinced that I am just a bunch of cells waiting for apoptosis. I am not one of those pray on the street types of people. I am not ever quick to think that I know the only way, at least when it comes to religion, and I am quite certain that, having made the choice to believe in a higher power, I am not the one who should judge others.. not who they love, or what they call their God, or how they pray or what they eat or the house they keep. As long as your beliefs don’t harm me, or my children.. or your children (and that’s a fuzzy line) then believe whatever you want, and let me do the same.

Change

Anna, Jake’s loving, kind, tender, demanding, experienced aide..is no longer going to be his aide at school.

She can’t physically care for him and take care of her body. When she asked about the future, changing her position in the class, being his aide half day etc, on Friday, she had no idea that it would mean that Monday morning she would be somewhere else.

I sobbed on the side of the road after I dropped Jake off at school today. His classroom teacher Janet had tears in her eyes when she told me. She didn’t know until this morning either when Anna called, also in tears. It was the right thing for the district to move her. She will be with pre-school kids now; little ones who are a third of Jake’s body weight. She will help little 3 and 4 year olds with disabilities and sad mommies, and those people will be so lucky to have her there. She is a good egg. She is good to the core.

and we will be okay. I can say that now, 12 hours later without having the tears in my eyes slip out onto my cheek. Okay I guess not. I am crying again.

It goes like this right? I mean change is the only thing that’s constant. It will be a growth experience for all of us. We will find someone else who will care for Jake, and fit into the classroom, and not be bitter that my nearly 8 year old still isn’t toilet trained. He or she will help him eat, and encourage him and know soon enough what his favorite book is and remember first to offer him water when he is upset.

I had to explain my tears to Lucy who sat patiently in the back seat eating vanilla wafers while I pulled to the curb and cried in my hands that no I was not mad at her. I said I was sad, and she asked me why.

I didn’t tell her the whole truth. I left out the part about how people are unkind, and impatient, and most won’t bother to learn all of Jake’s subtle cues about when he needs to eat and pee and rest and run. Didn’t tell her that while aides get paid a bit more for a kid in pull ups they will begrudge every minute they are in the bathroom with your kid…or worse yet leave your kid in soiled pants and let them get on the bus because they won’t be there on the other end of the ride when Jake is miserable and yelling and has kicked off his shoes because he is so upset and embarrassed. I didn’t tell her that the difference between a good aide and a bad one will make our home life easy or hard every single day. I left out that an aide without intuition may as well not be there, and that if her brother isn’t pushed and held to standards he won’t learn and grow and we will lose even more time. I couldn’t bare the thought of explaining that most people will just think her brother is severely mentally retarded and never even notice that he laughs at jokes and smirks when he has gotten away with something. I didn’t tell her that I was crying because her brother’s life is hard on an easy day and finding someone he can spend all those hours with and feel safe and happy will be just one more thing that makes it hard for mommy to relax while he is in school.

I told her I was sad because one of Jake’s teachers had to get a different job, and that Jake was really going to miss her. She asked if it was Anna. and when I told her it was, Lucy said “me too.”

We will all miss her.

I picked Jake up from school so he could have some time with Anna who had to come back to his school to drop off her keys. They hugged and we all cried and Jake kept hugging her and loving on her. We gave her a pretty ring as a goodbye present, and I made sure she has all of our information. Her new school is actually only three blocks from our house, so maybe we will get to see her sometimes, but we know how it goes in this life.

I am trying to just sit in the space of thanks. I am so thankful that we had a chance to have her as such an important part of Jake’s life. He is a better kid for having her as an aide, and I was so thankful for being able to relax when he was in her care.

and now I am going to drink a beer.

Change

 

Anna, Jake’s loving, kind, tender, demanding, experienced aide..is no longer going to be his aide at school.

She can’t physically care for him and take care of her body. When she asked about the future, changing her position in the class, being his aide half day etc, on Friday, she had no idea that it would mean that Monday morning she would be somewhere else.

I sobbed on the side of the road after I dropped Jake off at school today. His classroom teacher Janet had tears in her eyes when she told me. She didn’t know until this morning either when Anna called, also in tears. It was the right thing for the district to move her. She will be with pre-school kids now; little ones who are a third of Jake’s body weight. She will help little 3 and 4 year olds with disabilities and sad mommies, and those people will be so lucky to have her there. She is a good egg. She is good to the core.

and we will be okay. I can say that now, 12 hours later without having the tears in my eyes slip out onto my cheek. Okay I guess not. I am crying again.

It goes like this right? I mean change is the only thing that’s constant. It will be a growth experience for all of us. We will find someone else who will care for Jake, and fit into the classroom, and not be bitter that my nearly 8 year old still isn’t toilet trained. He or she will help him eat, and encourage him and know soon enough what his favorite book is and remember first to offer him water when he is upset.

I had to explain my tears to Lucy who sat patiently in the back seat eating vanilla wafers while I pulled to the curb and cried in my hands that no I was not mad at her. I said I was sad, and she asked me why.

I didn’t tell her the whole truth. I left out the part about how people are unkind, and impatient, and most won’t bother to learn all of Jake’s subtle cues about when he needs to eat and pee and rest and run. Didn’t tell her that while aides get paid a bit more for a kid in pull ups they will begrudge every minute they are in the bathroom with your kid…or worse yet leave your kid in soiled pants and let them get on the bus because they won’t be there on the other end of the ride when Jake is miserable and yelling and has kicked off his shoes because he is so upset and embarrassed. I didn’t tell her that the difference between a good aide and a bad one will make our home life easy or hard every single day. I left out that an aide without intuition may as well not be there, and that if her brother isn’t pushed and held to standards he won’t learn and grow and we will lose even more time. I couldn’t bare the thought of explaining that most people will just think her brother is severely mentally retarded and never even notice that he laughs at jokes and smirks when he has gotten away with something. I didn’t tell her that I was crying because her brother’s life is hard on an easy day and finding someone he can spend all those hours with and feel safe and happy will be just one more thing that makes it hard for mommy to relax while he is in school.

I told her I was sad because one of Jake’s teachers had to get a different job, and that Jake was really going to miss her. She asked if it was Anna. and when I told her it was, Lucy said “me too.”

We will all miss her.

I picked Jake up from school so he could have some time with Anna who had to come back to his school to drop off her keys. They hugged and we all cried and Jake kept hugging her and loving on her. We gave her a pretty ring as a goodbye present, and I made sure she has all of our information. Her new school is actually only three blocks from our house, so maybe we will get to see her sometimes, but we know how it goes in this life.

I am trying to just sit in the space of thanks. I am so thankful that we had a chance to have her as such an important part of Jake’s life. He is a better kid for having her as an aide, and I was so thankful for being able to relax when he was in her care.

and now I am going to drink a beer.

Is It Friday? Well it Must be Since Jake’s Talking!

I just got a call from Janice, Jake’s amazing teacher. Happy Friday!

This morning on the playground during A-PE (adaptive phys-ed)

Anna: “Jake look, there’s the circle. There’s the square. There’s the triangle.”
Jake: “Triángulo”

for those of you who do not speak Spanish, that’s triangle. What’s even funnier is that Anna was speaking English to Jake but his echolalia was in Spanish…so does that still count or is that spontaneous language?

______________________________________________

and later today

The class went to get ice cream because it is hot today in Deadwood City. When they got back to the classroom, Jake ate all of his ice cream up lickety-split (no surprise there).

And then he ate the rest of Anna’s ice cream too.

Anna: “Jake, your ice cream is all gone.”
Jake: “NO.”

Janice: “Jake, would you like some of my ice cream?”
Jake: beginning calmly and ending with high-pitched happiness, “yeAH!”

a few minutes later…
Anna: “Jake, you should say ‘Thank you’ to Ms. Janice for giving you some of her ice cream.”
Jake: beginning slightly muffled then ending clearly…”Thank YOU!

parenting note: to encourage open communication with Jake I must
a) learn Spanish
and
b) carry ice cream on my person at all time.

Is It Friday? Well it Must be Since Jake’s Talking!

I just got a call from Janice, Jake’s amazing teacher. Happy Friday!

This morning on the playground during A-PE (adaptive phys-ed)

Anna: “Jake look, there’s the circle. There’s the square. There’s the triangle.”
Jake: “Triángulo”

for those of you who do not speak Spanish, that’s triangle. What’s even funnier is that Anna was speaking English to Jake but his echolalia was in Spanish…so does that still count or is that spontaneous language?

______________________________________________

and later today

The class went to get ice cream because it is hot today in Deadwood City. When they got back to the classroom, Jake ate all of his ice cream up lickety-split (no surprise there).

And then he ate the rest of Anna’s ice cream too.

Anna: “Jake, your ice cream is all gone.”
Jake: “NO.”

Janice: “Jake, would you like some of my ice cream?”
Jake: beginning calmly and ending with high-pitched happiness, “yeAH!”

a few minutes later…
Anna: “Jake, you should say ‘Thank you’ to Ms. Janice for giving you some of her ice cream.”
Jake: beginning slightly muffled then ending clearly…”Thank YOU!

parenting note: to encourage open communication with Jake I must
a) learn Spanish
and
b) carry ice cream on my person at all time.

Why Can’t I get Any Help Around Here?

Just got a call from school.

Jake may have had a seizure..probably it was weird yawn (since he has been awake since 3 am), but they called and told me that he arched his back and his eyes rolled a little bit, so having not seen it myself.. the Doc will get a call.

in other news from school:

Each morning kids in Jake’s class have circle time. They walk to the board, select their name from the field of names and hand it to the teacher. Everyone cheers and says “Yay! You are at school!” or something like that. Jake does it too, and apparently chooses the correct name many times and is generally compliant and follows along and does it independently (his aide, Anna, stays in her seat).

This morning:
“Okay it’s Jake’s turn”
Jake gets up, walks halfway to the board (maybe a foot and a half). He stops and turns back around to his aide and SAYS
“Gubba,waging pho ewe ANNA!”.

the ‘Anna’ was VERY, very clear.

So they talked a bit about how Jake needs to be independent, and while Anna is his 1:1 aide she cannot do everything for him etc.

Jake walks to the board, picks out his name, hands it to teacher Janice.

The class cheered for him.

He turns, walks back to his chair but does not sit down. Instead he stands in front of Anna and says:

“Iba goma AGHHY art Nog Mutton” (no one could decipher this one) in an angry tone, stomped his foot, threw his arms up and down a few times then

sat down quietly.

The kid has a few opinions apparently.

Still Coughing After all These Days

Poor Jake, he coughs in his sleep.
Descartes coughs and he can’t sleep.
Lucy coughs so hard she throws up.
I am a little worried that this cough and cold are not related to the laryngitis and cough I had last week.

We are a tired, sort of grey family.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Jake went to school today. I called to check on him and I guess he was “not himself”.

I feel very disconnected from him right now. I’m not sure I know what “himself” looks like. He just seems so non-compliant and irritated with me. Which of course makes me tired and try as I might, I’m sure I have less patience than I usually do with him.

We haven’t finished the backyard. It will be winter soon anyway. How will I entertain him after school? I don’t want to force him to sit down and do more work, and that’s what anything seems like when he doesn’t want to sit still (after sitting all day at school).

I am going to check out some ABA in action.. see if something might be good for Jake.

Always behind. Always feeling like I am not doing enough for him, or doing right by him.

Conference Time

I had Jake’s parent teacher conference today. I nearly cried. Janet is such a grea teacher, and Anna his 1:1 aide, she loves him like he is her own.

Jake’s IEP was just a few short weeks ago.. I think October 4th?. Since then there have been several minimum days and a whole week of school off (actually a week and one day). And wouldn’t you know it, Jake has shown significant progress in nearly all of his goals.

We have always known/suspected that Jake knew colors, body parts, letters, numbers. He always looks liek he is “in there”, but we have not done a very good job of clearly documenting what he knows…and when some of those “experts” come in to view him for school evals or whatever, it looks like his is a not-so-little boy who has no awareness, and no understanding of his environment.

Making clear goals…and a notebook to document.. and PECS cards, we have been able to nearly ‘clean house’ on colors (choosing the desired color out of a field of two, switching left or right for placement of desired color– get it?). It was stunning to look at the little journal they have created and see how diligent the note taking has been and how excited both teacher and aide are about his progress. Calling it progress is sort of silly. Poor guy. He has known most of these things for years now I am sure, but this is really the first time we are really documenting what he knows. I think it will give us a better foundation to set expectations… and it will provide more continuity between class and home.

We are going to Tahoe tonight after my PTA board meeting. Traffic is lighter at 9pm right? Oi I am tired already.

Back to School!

Whoooooooooooooo HOOOOOOOOOOOOOOOOOOOOooooooooooo!

Jake went to school this morning.

Of course next week.. every day is a minimum day for parent teacher conferences. ugh

IEP Day

Jake’s birthday means IEP at our house, probably just another reason why i get so riled up.. by the way, I am all fine now..it’s October!

Our IEP went very smoothly. Always a delight when the teacher really knows and cares about your kid and is able to strike that delicate balance between praising and sharing all of his achievements while ensuring that he gets all of the services he needs.

The SLP is new to us, and new to our district. She has managed to get a pretty good idea of who my kid is in a matter of a month. Such a relief since we did not receive any speech last year at all. I am in charge of writing down all of the words we have heard Jake use appropriately
here goes:

• dog
• no
• yes
• ‘Manda (my sister Demanda)
• [my brother-in-law's name]
• elephant
• idiot
• fuck
• no home
• out
• outside
• done
• more
• I’m jealous

I know there are more, but I am too tired to come up with any more.