I need to start this entry by affirming to you that I do indeed LOVE my children, but there are times when I am ready to simply pack it all in and run away. How can these fabulous people drive me so insane???
I sat with one of my good friends yesterday (Gayley) and we both lamented about the complicated relationship we have with our kids and how it is STILL so complicated even though our kids are older. Surely it is supposed to get easier at some point???
No, it doesn't get easier - it just changes and the challenges evolve. And we also had to change and evolve to even have a chance to keep up. Sigh....it gets tiring. But that's where good friends come into the picture.
Most of my friends are involved in Autism in some way or another - most are parents but I also have a smattering of various professionals. All are wonderful sources of strength and support - the hardest lesson I had to learn was to actually ask for help. I still seem to forget sometimes that I have people to learn on. I let the feeling of "being alone" take over my life. And I suffer and so do my kids. Thankfully, I somehow crawl out of that place and start to talk to my friends and, without exception, they help me find my way back. And that's where I am today - crawling out of my hole, trying to breathe and relax and enjoy my children again.
Tomorrow will be a better day - how many times have I said that to myself? Actually, I have the following quote pinned to the wall by my bed (i just need to read it more often) -
"Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says "I will try again tomorrow" .
Take the time to attend as many parent support meetings as you can, and reach out to people at those meetings. Introduce yourself - if you're too shy then privately ask the meeting leader to introduce you to people who might have similar situations. Believe me, this is no time to sit back and just observe! Get out there and talk to people. I have found that by approaching people to ask for help I have been rewarded. People truly want to help, they just don't always know how and if you can help them with the how you will be amazed at the positive response you will get. And you may even find a friend!
Sunday, July 20, 2008
Thursday, July 17, 2008
Our Children's Future
I am fortunate to continually meet and work with families who have many different challenges due to disabilities. The majority of my clients are on the autism spectrum - I guess that's just a sign of the times. When we first meet, my goal is to listen. I need as much information as I can get about the whole family and what is going on, not simply about the child with autism. Afterall, as I see it, my job is not to fix the autism, but to help the "team" be able to work more effectively so that everyone feels supported. Focusing just on school, or home is pointless - the child doesn't exist in only one place!
The most important exercise I give my families to do is actually a written assignment (yes, I give out homework!). I ask the parents to do something that they have not done since the diagnosis was handed down - I ask them to dream of a future for their child.
When I first tried to complete this exercise myself many years ago it opened the floodgates of emotion that I had tried so hard to squelch in order to just be able to function and get through my day. And I cursed the person who first came up with this cruel exercise - didn't I already have enough to do and wasn't I already in enough pain??? But I think what really shocked and scared me most was realizing that I actually didn't have ANY dreams for my son - every dream I'd ever had for him had disappeared (actually exploded) when he was diagnosed. And, most heartbreakingly, no one had ever, ever, EVER encouraged me to dream again. Instead, I was trained to think only for the moment or the very short term. I still had dreams and plans for my other younger children, but none for Sam. That was so unfair. So, I put my feelings aside and began this exercise.
Start by dreaming of how you would like your child's life to be when he/she is 25 years old. Think of relationships (romantic, family, friends etc.), education, lifestyle, life skills, jobs - anything you can think of.
Then, work your way BACKWARDS! Dream of your child's life at age 21 - what needs to be in place in order for the "age 25" dream to become a reality? Then, dream of age 18 and do the same thing. Continue to work your way backwards using whatever intervals you like (1 year, or 2) until you reach your child's current age. You have now made a blueprint for everyone to follow to take your child from his/her current state to your dream.
Now, your dream will probably change over the years as some skills are learned more quickly and some don't! That's fine - we need to be flexible. But with out a plan, without direction, without that life dream, our kids are doomed. Teachers/therapists etc. are only concerned with the short term - for the amount of time that they will actually be involved with this "case". But parents MUST think in terms of lifetimes. It is our responsiblity to bring these dreams to each and every meeting and drag the rest of the team in that direction (sometimes kicking and screaming all the way). No one else will dream for our children. Take back one of your most important parental roles and dream for the future of your child.
The most important exercise I give my families to do is actually a written assignment (yes, I give out homework!). I ask the parents to do something that they have not done since the diagnosis was handed down - I ask them to dream of a future for their child.
When I first tried to complete this exercise myself many years ago it opened the floodgates of emotion that I had tried so hard to squelch in order to just be able to function and get through my day. And I cursed the person who first came up with this cruel exercise - didn't I already have enough to do and wasn't I already in enough pain??? But I think what really shocked and scared me most was realizing that I actually didn't have ANY dreams for my son - every dream I'd ever had for him had disappeared (actually exploded) when he was diagnosed. And, most heartbreakingly, no one had ever, ever, EVER encouraged me to dream again. Instead, I was trained to think only for the moment or the very short term. I still had dreams and plans for my other younger children, but none for Sam. That was so unfair. So, I put my feelings aside and began this exercise.
Start by dreaming of how you would like your child's life to be when he/she is 25 years old. Think of relationships (romantic, family, friends etc.), education, lifestyle, life skills, jobs - anything you can think of.
Then, work your way BACKWARDS! Dream of your child's life at age 21 - what needs to be in place in order for the "age 25" dream to become a reality? Then, dream of age 18 and do the same thing. Continue to work your way backwards using whatever intervals you like (1 year, or 2) until you reach your child's current age. You have now made a blueprint for everyone to follow to take your child from his/her current state to your dream.
Now, your dream will probably change over the years as some skills are learned more quickly and some don't! That's fine - we need to be flexible. But with out a plan, without direction, without that life dream, our kids are doomed. Teachers/therapists etc. are only concerned with the short term - for the amount of time that they will actually be involved with this "case". But parents MUST think in terms of lifetimes. It is our responsiblity to bring these dreams to each and every meeting and drag the rest of the team in that direction (sometimes kicking and screaming all the way). No one else will dream for our children. Take back one of your most important parental roles and dream for the future of your child.
Saturday, July 12, 2008
Research programs etc.
This past week my son, Sam, has participated in yet another research program in our local area. Over the years, we have been interviewed numerous times on a wide variety of topics relating to autism. Sam had patiently agreed to have MRI's and brain scans done, usually with the help of friendly researchers and video games. Usually, he is paid for his participation and he always LOVES that part!
This week, he had another brain scan and MRI - this time they are looking at how the 2 sides of the brain send information back and forth. Also, we had researchers come to our home yesterday to interview us on our views of the transition process from school to adulthood (which, in case anyone is interested, is pathetic - I don't care where you are, what district, whether or not you hire an advocate or attorney, the resources simply do not exist to do anything but a lousy job. There are people working hard to help, but they are given no money or support to do more than the basics, if that.
Anyway, back to the testing - I would recommend that you look into allowing your child/children or even yourself to be part of as many tests as possible. Occasionally, you will be given a report that can open yet another door of understanding of how your child sees the world. But, more importantly, you will be doing your part to help the future of all people affected by autism.
This week, he had another brain scan and MRI - this time they are looking at how the 2 sides of the brain send information back and forth. Also, we had researchers come to our home yesterday to interview us on our views of the transition process from school to adulthood (which, in case anyone is interested, is pathetic - I don't care where you are, what district, whether or not you hire an advocate or attorney, the resources simply do not exist to do anything but a lousy job. There are people working hard to help, but they are given no money or support to do more than the basics, if that.
Anyway, back to the testing - I would recommend that you look into allowing your child/children or even yourself to be part of as many tests as possible. Occasionally, you will be given a report that can open yet another door of understanding of how your child sees the world. But, more importantly, you will be doing your part to help the future of all people affected by autism.
Thursday, July 3, 2008
More Training!
I am trying to work out what conference I want to attend this summer. Usually, I attend one in Hawaii (afterall, if I'm going to spend time and money AND be away from my kids I may as well be in paradise!) but this year I'm thinking of heading to Sedona.
Yes, I know it will be HOTTER THAN HOT but this conference will be very hands on training, and I always enjoy learning more practical skills. I don't get many chances to use them in a classroom setting but I find it invaluable to be able to give real advice to teachers who may be struggling in their classrooms, not only with the behaviors of my client but also others - I rarely find a classroom that has only ONE problem child!!
I see my role as an advocate as one where I help the whole team to the best of my ability. I try to find ways to give the parents the support they need, I try to determine how the whole IEP team can best meet the needs of the kids, and that includes the teachers AND administrators! I don't leave anyone out of my analysis or my suggestions for improvement. So, taking the time to learn new and better educational and disciplinary techniques is something I not only enjoy but it is of great benefit to my clients.
Not many advocates work this way. But I want to be able to leave my clients with an IEP team that actually works together and includes the parents. So I am very careful to build bridges, and not destroy them. Afterall, this team will be together long after I am gone and they may as well work well with each other.
Yes, I know it will be HOTTER THAN HOT but this conference will be very hands on training, and I always enjoy learning more practical skills. I don't get many chances to use them in a classroom setting but I find it invaluable to be able to give real advice to teachers who may be struggling in their classrooms, not only with the behaviors of my client but also others - I rarely find a classroom that has only ONE problem child!!
I see my role as an advocate as one where I help the whole team to the best of my ability. I try to find ways to give the parents the support they need, I try to determine how the whole IEP team can best meet the needs of the kids, and that includes the teachers AND administrators! I don't leave anyone out of my analysis or my suggestions for improvement. So, taking the time to learn new and better educational and disciplinary techniques is something I not only enjoy but it is of great benefit to my clients.
Not many advocates work this way. But I want to be able to leave my clients with an IEP team that actually works together and includes the parents. So I am very careful to build bridges, and not destroy them. Afterall, this team will be together long after I am gone and they may as well work well with each other.
Subscribe to:
Posts (Atom)