He's Growing Up

The last few weeks have been full of a glimpse into the future for both me and Brandon.  I am not sure who has been more surprised.  Me at seeing Brandon grow just a little more into an adult and in some ways loving it, but in other ways wanting to protect him from the world; or Brandon learning a little about life in the future.  Brandon started his job with Goodwill this week.  Last week was spent preparing paperwork, meeting with Goodwill and preparing Brandon for work.  I have learned over the years that Brandon's perception of events are often not what he has expected even if I try to explain prior to the event.  This was no exception.  Brandon went to Goodwill on Monday for training.  This is really a fabulous program focused on transition from high school to work for kids with special needs and kids at risk.  They help develop job skills for the future.  This year Goodwill received funding for this summer training program. I really cant say enough good things about the program and it is a fabulous opportunity for Brandon.  Brandon did well at training but may been a little overwhelmed at all the other kids in the program.  Ross his aide went with him.  For any of you parents reading this you may want to consider this program in the future. 

Brandon was assigned to The Coalition of Texans with Disabilities.  Complete coincidence where he was assigned and a surprise to my friend Dennis, ED of the Coalition and me.  However, Brandon could not have been assigned to a better place.  The first day was really rough.  Brandon had figured out that if he refused to work he would get fired and then he could just stay home and be on the computer all day.  Brandon just refused to work.  It was a tough day for everyone.  That night I decided to talk to Brandon about jobs and the future.  Of course I thought I had already covered most of this, but it is all how you explain things with Brandon.  Brandon and I talked about the future and that either you work or you are in school.  Those are really the two options.  I think Brandon was shocked that he will work for a very long time and no one had really told him that.  The other thing we talked about was the simple thought about work.  "Work hard" and "everyone is happy".  For some reason that stuck with Brandon and the rest of the week went much better.  Brandon has been walking around the house saying "Work hard, be happy".  Whatever works.  This week I also completed Brandon's new trust accounts and had to work with the bank to set them up.  So while I spent time at the bank I brought Brandon with me to set up his first bank account.  This was a little scary for both of us, but Brandon was very excited to see his name on a bank card and to learn that he will make almost $600 which he will put into his bank account and be able to spend some of it on DVDs.  As part of his job this week he went to the Capitol to learn a little about advocating for people with disabilities.  He couldn't stop talking about the Capitol.  A possible future lobbyist.  So a good week for Brandon's first job experience.  More later.  Leah

We've been busy

It has been a busy few months for Brandon and me.  At the first of the year Brandon started his personal network of friends.  I think I have blogged about this previously.  But the main reason for developing a personal network for Brandon is to have more than me having the knowledge about everything Brandon, having a great group of people help brainstorm ideas to support Brandon's great life and a support network to find resources for the future.  I have probably stated why we wanted to start a network for Brandon better in previous blogs.  Since our January meeting a smaller group has formed.  We have met twice and will meet again in June. Our main focus is on the good life plan Brandon developed in Jan. with the larger group.  The group worked with Brandon's main goal of wanting to be the King of Rock n Roll.  Not an easy task, but one we are all taking very seriously.  Since Jan., the group has helped Brandon discover the Goodwill summer job training program, found Brandon a Rock n Roll camp, helped re craft his special needs trust, helped with a modified child support order and a new trust, found a set of drums, sent exercises to help with Brandon's fine and gross motor issues, helped work through choosing guardianship or power of attorney after Brandon turns 18 and started the application for SSI for when Brandon turns 18.  I also have found through the group some great transition trainings, webinars and connections in the community.  Brandon is also starting to socialize with a friend network.  Brandon has developed his own Beatles Blog, emailing some friends and starting to deal with his own laundry and his room.  We are also planning a plane trip to see Brandon's brother Patrick in August.  The network has really been helpful already and having the plan developed has made it much easier. 

I few updates.  Brandon was selected for the Goodwill Summer Work Program and will be working with Dennis Borel at the Coalition of Texans with Disabilities.  Dennis and I are friends, but this placement was completely random.  This will be Brandon's first job and he and I are very excited.  I am excited because I think this will be a great positive first job for him.  He is excited because he will earn $7.25 per hour and can buy lots of CDs and DVDs. 

Also I found through the network the VSA Teen Apprenticeships in Arts and Drama Summer Program.  Brandon has done this program before and it is really great.  It is through VSA Arts of Texas (http://www.vsatx.org/ ) and he really loved it. 

Normally I would not put this detailed of personal information on the web but I wanted to share with other families trying to find resources for their kids. 

Lastly some medical news.  Brandon and I went to Dallas to Scottish Rite this week to check his foot.  Everyone believes the foot operated on is doing great and the other foot does not need surgery at this time.  Great news for us.  Scottish Rite does want to follow Brandon's scoliosis further and took several x-rays before we left.  We will not need to return for at least 6 more months.  Great news. 

Next week Brandon will go to the University of Houston for a final vision assessment for the DARS vision services.  This will determine if Brandon will meet the Texas definition of blind and receive transition services through the vision section at DARS.  Think good thoughts.  The program is really good. 

Lastly some bad news, after my last blog Brandon had a seizure and became disoriented at school.  He also had an extreme headache and was off balance.  It continued most of the day and out of precaution we decided to have Brandon checked at Dell Children's Hospital.  For those of you who are fortunate enough to never had to go to the Children's ER, this means at least 6 hours in the hospital (minimum).  It took 1 1/2 hours to get there and it was almost 6 hours before we left.  Brandon appeared to have developed a bad migraine.  He was given several medication to get rid of the migraine.  Once the migraine was gone Brandon's balance came back.  It was a little scary because it looked similar to a stroke.  All is well now and we are back to non-stop Beatles.  I knew Brandon was really sick because he didn't listen to any music or talk the whole day.  Unusual for him.

More later
Leah

Happy Mom's Day

Brandon and I had a great mom's weekend.  We took my mom out to lunch Saturday at the Mandola Vineyards in Driftwood with my brother.  Brandon gave me my mom's day wish of sleeping late today and we had a nice lunch with my friend Kate and Brandon in Dripping Springs.  Basically a great mom's day weekend.  Brandon came in this morning and said "Happy mommies' day mom" and there have been many hugs and kisses all weekend.  I have always told Brandon that the great thing about being a mom is that mom's get hugs and kisses whenever they want.  He loves that and so do I.  That is the great thing about Brandon he never gets too old or too tired of hugs and kisses. 

I look back over the years at all those mom moments I wish I could change.  The time I gave Brandon as an infant an adult dose of my cough syrup thinking it was his seizure medication and had to stay awake all night to watch him; the time he broke his foot and I thought it was just a sprain after a visit to the doctor only to find out a week later he had really broken it and in the meantime I made him walk on it at Patrick's boot camp graduation.  I couldn't understand why he was so whinny and then feeling really bad when I found out it was really broken.  The time we were at our property clearing brush by the "swimming hole" when Brandon slipped in and I found him at the bottom of the swimming hole (not more than a few seconds but scary), and you know all those times I forgot lunch for school, didn't quite get the schedule right for the day or two sitters show up at the same time.

Then I look back on all those great moments like the first steps Brandon took at 4 after I just received his new wheelchair; the first time Brandon ate food through his mouth at 5 following1 month of rehabilitation in the hospital.  Brandon's first Christmas in ICU after his birth with all the great nurses caring for him; the first time I heard Brandon say "mama" and I could understand him; those great Beatles duets we sing in the car; the day the doctor's said Brandon is taking more food by mouth than through his g-tube; the day I finally was able to have all machines unhooked to Brandon at night; the time when Brandon did not need any more night nursing at age 7; the 18 months of home school when I learned how smart Brandon really was; the first sentence Brandon formed on his communication device; the first time Brandon voluntarily spoke after the class I took helping me to learn how to communicate with Brandon; the time Brandon accepted his award for the Beatles movie he made that won second place at a local film festival and all those good comments from people who have been touched by Brandon's sweetness.  But the best thing I can say as a mom is that Brandon is happy and for me that is a great success.   

With the exception of the few scary illnesses in Brandon's life I would not change a thing from the last 17 years.  Brandon has really taught me what is really important in life and how to appreciate those things, a lesson some people never get to experience. 

So for all you mom's out there, especially you single mom's - we hope you had a "Happy Mommies Day".  You deserve it. 
Leah

In Motion

Brandon's Softball Toss

Brandon at Special Olympics