Modeling For My Sons

I'm going to be honest. I like it when my sons see me upset. Why? Because then they see me get over it. They see me become calm, kind, and even joyful again. I can be so very angry. I express it, sometimes vehemently. And then I let it go. I can be sobbing like somebody just died. Half an hour later I'm hugging and kissing them and my sense of humor has returned. I always explain why I'm feeling what I'm feeling, and I apologize if needed, but then the past is in the past and it's time to move on. Grudges, pining, and ruminating are a waste of energy. Forgiving, letting go, and trusting: those take far less energy and result in so much peace and happiness. I hope that's what my sons see in me, and they grow up to be men who can feel their feelings fully, and then let them go.

Good Mourning

It's 5:00 in the morning and I've been wide awake for the last hour because I had an upsetting dream. I was pregnant. My partner wasn't thrilled about it but he was being supportive. I was very happy about it. I went into labor early and had to be rushed to the hospital. That's where the dream ended.

I felt so sad when I woke up. I'm just laying here thinking about why that is. I think I'm mourning that I'll never have a "normal" pregnancy, a "normal" birth, and a "normal" child. We get what we get in life, and we get it all for a reason. I believe that, and I wouldn't trade my life or my children for anyone else's, but I don't think I've really come to full acceptance yet.

Seven years, and I'm still grappling with the situation of my pregnancy and the boys' birth. In some ways I think the wounds ache more now then ever before. Maybe it's because I'm in a safe, supportive relationship now, in an emotional space where I'm able to feel these emotions and work through them. Maybe it's because I wish I could make a child with the wonderful man I'm with. I hate focusing on negatives, though. Maybe that's why its hard for me to accept that I have these feelings. I just want to be grateful for what I have. Sometimes it is so tempting to feel sorry for myself, and I just don't want to go there.

The truth is, I wanted a different path. I wanted to have a child while in a supportive, loving relationship. I wanted a healthy baby. I wanted to nurse. But beyond that...God, I love my children so fiercely. They are beautiful, healthy, smart, funny, and amazing. "Normal" isn't really a word in my family's vocabulary, anyway.

Sense of Humor

Alex was reading Highlights magazine a few days ago and burst out laughing. He had read a knock-knock joke and got the humor in it! Ever since he's been learning new knock-knock jokes and telling them over and over. This morning he sneezed and I said "Bless you." His response was "Ash", and of course I had to say "Ash who?" "Bless you!" he replied.

Mommy ate the bunny's eyes

Alex is so upset that I ate the eyes off his chocolate Easter bunny. He was squeezing my stomach and trying to get me to spit them out. "I want to get the eyes out!" Now he's in bed crying that we need to go to the doctor so the doctor can get the eyes out of Mommy. I thought he didn't want to eat the bunny because he was afraid to, something like the way he's afraid of stuffed animals. I was trying to show him that it was okay. Turns out he wanted to keep it just the way it was. Oops!

Happy Easter?

While the rest of the family was enjoying Easter brunch I was sitting on the family room floor with Alex in a full body hold. Sometimes life is so damn unfair.

I've just been realizing in the last few days how angry I am that I have an autistic child. I've never thought of that before, but I think it's been there. Maybe that anger is a big part of why I'm so unhealthy. It's not a feeling I want to deal with, anger over who my child is, but it has to go somewhere...

No Batteries Required

Alex wanted a Nintendo DS like his cousin's, so he made one. Out of Legos. From memory. Here it is next to the original. I love my child's mind.

Pingu

I'm sitting here with Alex watching Pingu. It's been awhile since he's watched it. He used to sit here quietly watching and laugh every once in awhile. Now he's narrating what they are doing, talking about their emotions, telling one of the characters "Don't eat that!" The development in his language is amazing!

Trick or treat

Alex walked up to the front door of the first house we visited tonight and instead of the standard "trick or treat" he said "I want a rock." He was cracking up at Charlie Brown last night. I think he was a little bummed nobody threw a rock in his sack tonight. Maybe next year, honey...

Gym membership? Why bother?!

I was just thinking that I didn't get any exercise time in today. Then I remembered doing squats to play with the parachute with the kids in gym class, teaching music with full-body motion songs with pre-schoolers, taking a walk in the rain, and chasing a ball and the child who threw it down the hall.

Whoa!!! First Grade???

Seeing it printed in black and white on orientation materials makes it so much more real. Kindergartners are still little boys, but first graders . . . they're not little anymore.

We had Spencer's open house yesterday. He kept telling me he didn't want to go to open house and didn't want to go back to school, but once we were inside he was bounding up the stairs with a big smile on his face to show us his new classroom. He is in a 12-1-2 again this year, 1st through 3rd graders (which is called E1 in the Montessori program). He already knows half the students in his class, one of whom is his bus driver's grandson and a good buddy of his. His bus driver was there and told us she'll be driving him again this year, which I was hoping for.

Spencer's new teachers are young, energetic, and positive people. They will be great facilitators for his learning. He will continue to have lots of opportunities to learn about the things he's interested in and work at his own pace on the things he struggles with, with lots of support and encouragement. I'm so excited for him and can't wait to see how he grows this year.

Curses!

There is just something so funny about hearing your son with autism say "Dammit, f***it" in the right context. Functional language, that's what we're shooting for!  He has heard the words "dammit" and "f***" out of our mouths on occasion, I won't deny it. But this particular phrase he came up with all on his own.  And he says it so passionately!

Long Overdue

This virus, followed by bronchitis, followed by gastroenteritis diet really works! I've lost my holiday weight gain plus some! Seriously, how is it possible to be dehydrated but still have post nasal drip?

Over the holidays I put our Christmas train around the tree. I told Spencer, "It's a decoration, not a toy. You can look at it with your eyes, but not touch it with your fingers." He replied, "But Mom, my eyeballs are in the ends of my fingers!"

Here's a video of the NICU where Alex and Spencer spent the first three months of their lives.  There are quite a few pictures of us in it.  It's a beautiful way to show them what we experienced there.  I hope you'll consider giving to the March of Dimes, the AMC Children's Hospital, or Ronald McDonald House Charities of the Capital District.  They are all part of the miracles that Alex and Spencer are.

When things happen I think to myself "I need to blog about that!", but I always get busy and then forget what it was I wanted to share.  I'll be back when my memory decides to serve me better!

Thanksgiving 2010

Alex is Drawing

Up until two weeks ago I had never seen Alex draw anything but scribbles.  When I visited his class I was shocked to watch him draw a truck.  Not the greatest drawing, mind you, but definitely a truck.  He was very careful and focused as he drew it.  Three days ago he drew a person on the chalkboard, copying from memory what my mother had drawn a few minutes before.  This is what it's like with a child with autism: you never know just what might be going on inside the mind of your child.  Alex is constantly surprising me.

Alex's Toileting at School

It's quarter after five on Friday and I just got off the phone with the CSE chairperson.  She assured me that the staff at Alex's school can indeed take him into the boys' restroom.  She added his need for toileting supervision to his IEP while we were talking and said she would send me an updated copy.  One less thing to worry about.  Maybe I'll actually be able to sleep tonight!

Interactive Alex

The boys are watching a movie they've never seen before.  A character was being chased by a rock monster.  I heard Alex say "Oh no! . . . Be careful! . . . Run!"  I've never heard him talk to a movie like that before.  Pretty cool!

Favorite Moments of the Day-Mother's Day 2010

Alex, drawing on the easel with markers, declared himself "Alex and the Purple Crayon".

Alex is in his bedroom playing, I'm in mine on the computer.  He starts his usual do-do-loo singing and I recognize the tune: the William Tell Overture.

Yes, life with a child with autism is hard sometimes, but moments like these remind me of all that there is to rejoice about.

Kindergarten For Alex

This morning we had Alex's CSE meeting to determine his placement for next fall.  After much discussion it was decided that we would try placing him in the 8.1.2 class at our district elementary school.  It is a self-contained classroom with eight students, one special ed teacher, and two teaching assistants.  He and Spencer will be at the same school, which I am happy about.

I'm nervous, however, about the staff's ability to meet Alex's intense needs in the classroom.  Will they be able to give him a break when he begins to feel overwhelmed, or provide appropriate sensory input when he's having trouble focusing or sitting still?  The speech therapist from the school assured me that she was confident of the staff's ability and willingness to do so.  The placement will hopefully strike the balance between meeting Alex's therapeutic needs and allowing him exposure to typically developing peers, which he has really benefited from in his current program.

It's a gamble no matter where he's placed.  We can only do our best to find what we feel is the appropriate placement for him and then hope it really is.  My intuition tells me that we've made the right decision.  Only time will tell.

Where In The World Will Alex Go To School?

Alex's CPSE (Committee on Preschool Special Education) meeting is in two weeks.  This is the meeting at which the school district will determine what placement is appropriate for him when he transitions to kindergarten in the fall.  I got a letter from CPSE a few weeks ago asking for permission to have a psych ed evaluation done to aid in the process.  Okay, fine, I signed the paperwork and sent it back.  Last week the school psychologist showed up to evaluate Alex at school, without an appointment or any forewarning.  I didn't even know about it until it was over and done with.  Ally's teacher had no time to prepare him for the interruption in his day.  The psychologist didn't take any time to get to know him and appeared not to have even read his file.  She wasn't able to get any data for the tests because he was "non-compliant".  Well, what did she expect?  He's autistic, he didn't know her, and he had no forewarning.  To top it all off, last week was a horrible week for him, between potty training and getting over a bad cold.

The psychologist's conclusion was that the district doesn't have a placement for Alex right now.  She thought the 6.1.2 class in-district would work for him, but it's already full for next year.  She doesn't think the class at our local school, which is an 8.1.1, is right for him, but I've heard wonderful things about the teacher (she used to teach at Spectrum Services), and all of the children in the class are on the spectrum.  The district is required by law to provide the appropriate program for your child, but where do you go and what do you do with the child while you're fighting with the district and state to give him what he needs?!!

Potty Training Update

Potty training Alex is going well.  I'm so glad we decided to follow the protocol that's used at the center where I work.  We've been doing underwear only for 8 days now (other than in the car).  Yesterday there were zero accidents!  For the last two mornings he has woken up dry.  He gets it, he really does!  I don't know when he'll be able to sense on his own that he needs to go to the bathroom, but I know that will come.  He knows how to hold it between scheduled potty times, and that's big!  The emotionality that came with the big change from diapers to underwear seems to be subsiding.  He's adjusting to the change and has become more comfortable.  Potty training an autistic boy is not as terrible as I feared: we just needed to find the right plan and make the commitment to do it.

Potty Success

It's two days until Ally's fifth birthday.  We've been working hard on potty training for a couple weeks, putting him on the potty every 20 minutes or so, with no success.  Today we went to see the ophthalmologist up in Albany.  I put him on the potty there and he peed!  Later we went to lunch at a restaurant: he did it again!!  Still later we were shopping at Christmas Tree Shoppes: a third time!!!  We dropped our friend off at her house an hour and a half later: he was still dry and did it a fourth time!!!!  We got home an hour later: still dry and peed in the potty for the fifth time today!!!!!  Five times in five different locations!  Way to ring in your fifth birthday, Ally Bear!  Guess we don't have to worry about him being uncomfortable using the potty in strange places.  Woo hoo!!!