May 17, 2012

Tonight we had what I hope to be Jack's last formal evaluation... although I know evaluations will continue to take place as we start to identify Jack's program of care.  Next Tuesday a team of 6 from the school district will come to our house to deliver the formal report from the school district.  I know it will be long.  The meeting starts promptly at 8am.  I haven't figured out the kids schedule for that morning.  I'll think about it more tomorrow.

We received the formal written medical diagnosis yesterday.  It was 14 pages long - single spaced, mostly narrative, along with many, many results from the various standardized tests either Paul and I have completed via questionnaires or from the medical observations conducted on Jack.  I started to read the diagnosis - but it was too painful to read.  I began to browse the report and ultimately decided to stop reading.  I knew the content, I knew the story... it had been my life for the past 18 months.  I decided now was not the time to relive it.

Jack and I went to Trader Joe's tonight.  I'd consider our trip out a success.  No meltdowns.  Tomorrow I'll be starting a scientific log to track Jack's activities, behaviors and patterns.  I'll be tracking the basics like sleep, food, etc.  But also others like - how hard was it to get dressed - and maybe most importantly - his ABCs - Antecedent, Behavior, Consequence.  The goal is to scientifically identify repeated behaviors that we want to correct.  2 weeks from today we will go to the GFCF diet.  I'm starting to work with Jack to identify some favorite GFCF foods to help ease the upcoming transition.

May 14, 2012

I took Jack and Nora to Sensory Night at Pump It Up.  Paul didn't go.  I think maybe he was intimidated by what he may see there.  I think he'll go next time - because I told him it was a success.  There weren't that many families there - compared to a usual free time or family night at Pump It Up.  Nora, Jack and I had a great time.  It was a fun night and good exercise for all of us.

Just got some books:

Let Me Hear Your Voice:  A Family's Triumph Over Autism "A universal tale of hope, dogged parental love, hard work and ultimate triumph."

Overcoming Autism:  Finding the Answers, Strategies, and Hope That Can Transform a Child's Life  "A State-of-the-Art Approach to Reducing the Symptoms of Autism Spectrum Disorders"

I apologize to anyone who reads this blog and finds my entries offensive or reads them and thinks that I am feeling sorry for myself.  I wrote this blog to try to understand our own story, to better understand Jack.  I wrote this blog - to answer the question that I am so often asked - "How are you doing?" Its not a question I can answer in a few words.  I realize that most people just want to hear "Good."  Some moments feel okay, some moments feel good, and some feel bad, scary and ugly.  I think that's natural.  Please build me up, don't cut me down.  

I also want to clarify that Paul and I are united.  We are lucky that we are united - many parents are not.  We also know that the rate of divorce for parents of autistic children is very high.  I ask that everyone support us together and to not say or spread thoughts that could tear us apart.

If you don't like this blog - simply don't read it.  But I urge you to read the two books above - especially, Let Me Hear Your Voice.  

You would fight cancer with an intensity.  You would lose a breast or two, put strong chemicals in your body to kill the dangerous cancerous cells.  You wouldn't sit back and see what route the cancer might take in your body.  You wouldn't wait for 6 months or 9 months and not treat the cancer.  Autism is very different than cancer... but in some ways it is similar.  Autism is very different in Alzheimers... but in some ways it is very similar.  Autism is a neurological disorder - and you don't want it to keep progressing - you don't want your child to remain mentally at the level of a 1 year old.  You fight it - just like you would fight cancer - just like you would take medicine and fight off the progression of Alzheimers.  I am fighting for Jack.  I ask people to advocate for Jack, advocate for our family, be an advocate for this fight.  

Jack was developing normally... and then something went very wrong.... something is going wrong in his brain.  In some areas - he is only at 11 month development.  I don't think it is unnatural for Paul and I too feel such strong emotions after learning his medical diagnosis not even one week ago.  I called Lifeworks this weekend.  And the person on the phone was so kind.  She showed empathy for me... and I appreciated it.

The saying is "If you've met one child with autism, then you've just met one child."  Autism is so different from child to child.  That's why it is such a scary diagnosis.  You don't know the path your child's brain is following - you do know that you want to help retrigger and redirect those paths.  There are therapies to help with that.  You do know that you have a short window of time before those paths become permanently set.  You take advantage of that window with a dogged persistent and intensity.  You advocate for your child.  I believe this is the good fight.  Please join Paul and I.  

Mother's Day Apology

It is Mother's Day.  There is one mother I want to call.  It is Mother's Day - and I think she will empathize and understand.  I called Sylvia tonight and apologized.  I can't remember what I said to her the evening I received Jack's diagnosis - but I know I was wrong.  I remember it was a painful night.  I truly think I must have had a nervous breakdown.  I apologize and tell her how much I love my son and my daughter.  How much I want my family.  I apologize for my words and actions.  I am honest - I tell her that I am in an indescribable pain - I am praying for God to take away this grief.  She accepts my apologies and is kind to me.  She listens to my story and to my feelings and she doesn't tell me to feel otherwise.  She tells me to get some sleep.. that sleep will help me to be stronger.  And she is right - so goodnight.

Rewards

We want to try ABA therapy with Jack.  It is a way to teach "good" behaviors using a "fun" reward system.  So I am trying to find healthy rewards.  An easy reward would be tv - but its not healthy, and its not practical. 

Nora is very good at finding rewards for Jack.  Bubbles are a great reward.  Fun for both Nora and Jack.  Relatively inexpensive.  Nora also used a fun little cupcake toy as a reward.

Nora and Paul are home.  Time for pizza.

May 13, 2012

Its 6:45pm.  I just got Jack to sit down to eat dinner.  I wish we were all organized to eat as a family - but we aren't.  I don't have food in the freezer, I don't have meals made.  We are ordering pizza - again. 

I am looking at photos.. Jack eating baby food, Jack eating blueberries, Jack eating watermelon.  Now Jack hardly eats anything.  What happened?  When did it happen?  Why?  I can't focus on those questions now.  I need to get help. 

Jack was upset when he woke up from his nap today.  He is always upset when he wakes up from his naps.  I have to figure out to help him transition from being asleep to being awake. 

Jack is eating raisins, chicken nuggets, and a gluten-free waffle.  I am pretty sure Jack is allergic to milk.  Now Jack drinks almond milk and coconut milk.  I am making the change for myself as well. When we went back to cow's milk... Jack's bottom got terrible rashes and a rash appeared over his stomach.  Now we are going back to almond milk... and cocunt milk.  I am still experimenting with flavors, calories of the milk. 

I need to write an important email to Dr. R right now.  I am trying to get Jack help as quickly as possible.  Its not easy to do.  We have hard choices to make.  We are gambling with our limited resources, with our child's life.

May 12, 2012

Cut Jack's hair today.  It was so long and crazy looking.  It took a long time too get it done.  The hardest thing was getting him comfortable that the scissors wouldn't hurt him.  Wish I knew what I was doing.  I really want him to look his best.  I think it looks okay.  Thankfully he has a curl to his hair - so as it grows out a bit - it will forgive my poor barber job.

Paul got Jack down for a nap today.  It was hard to do... but Jack did fall asleep... Paul felt something about the lights were bothering Jack.  Jack fell asleep in Paul's arms.  This really is not ideal.  We want Jack to fall asleep by himself.  So we need to keep working on that.  Jack slept for 2 hours.  When he woke up he was hungry... he ate chicken nuggets, a sweet potatoe cupcake, and my newest creation - a peanut-butter, carrot puree, banana and chocolate chip muffin (using almond flour!).

The kids and I had a good afternoon.  Nora and I set up a little baby and animal hospital in the front green room.  Jack even played with us.  I will leave the front room with our baby and stuffed animal toys.  Hopefully we can practice our pretend play everyday.

Nora is struggling... acting out.  I want to help her.  We are all stressed.  We need help.  We have all been pushed beyond our limits.  There is still much to do.  Every moment counts.  I wish I had the right books for Jack, the right tools.... I wish we had the insurance, the funding.  We are working on it... but we feel desperate... doors close everywhere.  We are thinking of trying to fund 20 hours/week of the school ourselves. It would be expensive --- but it might make a huge difference in Jack's life.  It could be THE difference.

We went to the park tonight.  Jack and Nora had fun.  Jack fell hard - skinned his knee.  He didn't cry.

I'm going to work on a special log to track Jack's sleep patterns, eating, and his ABCs (antecedent, behavior, consequence).  That information should help me focus on where Jack needs help.  Its a start.

May 11, 2012 - Antecedent

5:40 pm - Jack has recently woken from a nap.  He had a busy day.  He missed his regular nap because we toured Autism Matters.  We got home around 3:30 and Jack took a nap then.  when he woke up - it seemed like things would be a struggle.  We wanted to eat dinner because Nora had tickets to Pippi Longstocking at Children's Theater.  I made dinner.  Set out a special dinner for Jack.  He wasn't happy he wanted to watch tv (I think).

I bring Jack to the table, he screams and cries.  I am not sure what to do.  I don't want to turn the tv on and give into his behvior.  Jack's screams and cries become worse.I am not sure what to do.  Maybe he wants to sit on my lap?  I want Jack to eat dinner, to learn his social graces... I don't want him to be so dependent on me.  He is crying, at my side, begging me for help.  I don't understand him.  I don't want to reinforce bad behavior.  It is so hard.  Our mealtime is terrible.  It has been 20 minutes.  Paul takes Jack upstairs.  Jack becomes more frantic.  What am I supposed to do?  Am I supposed to comfort my child or ignore him?  The tantrum lasts 25 minutes.  Finally I take Jack from Paul.  I rock him in his room, using the rocking chair and a weighted blanket and we listen to comforting music.  Jack is quiet.  The tantrum is over.  I can sense he is scared.  I am scared.  What calmed Jack?  Was it me?  Am I the only one who can help Jack?  I want so desperately for him to be independent.  What am I supposed to be doing?  I am haunted.  There is no peace.

Paul takes Nora to Children's Theater.  I write, I write this blog.  It gives me peace.  I will need to read my story... I will have to track Jack's food, his sleep, his behavior, his tantrusm, his progress, his regression...
I will use this blog to learn about Jack... and maybe to learn about myself.  Jack needs help, Nora will need help, Paul and I need help.  There is much to do.