Having a child with an Autism Spectrum Disorder is often a lonely road. It is not only a challenge for your child, but also for you as a parent. It's very hard to find friends who are understanding to the constant sensory issues, and meltdowns your child faces most every day, unless they have been thru it themselves.
Anything can set your child off, and sometimes it is hard to know what might set them off. It is a constant puzzle that as a parent you are trying to figure out. It can leave a parent feeling very lonely, depressed, and exhausted on a daily basis.
When your child has major sensory issues (like my son), it is scary to take them places for fear that something might set them off. And when you take your child out into public, or to one of your friend's homes, you feel guilty if your child cannot handle that situation.
You feel bad that you put them in that situation in the first place, and wonder if maybe you should just be a 'homebody' and not take your child anywhere anymore. It is scary, and hard... constantly facing angry stares from people when your child is having a meltdown, or people judging you as a parent because your child is having a temper tantrum in the middle of a store because of sensory issues.
A lot of people don't realize how hard it is for us parents. Some think it is 'our fault' our child is this way, and some think our child will just 'grow out of it' someday. They don't understand that their constant judging is pushing us further away from opening up to others.
Sometimes we lose friends because either they don't try to understand, or maybe they just don't want to put our child in an uncomfortable situation anymore, and so they withdraw from us. So we withdraw, and we go into our own seclusion and think, "Maybe it is best that we just don't try to talk to people anymore."
In a way, I think I understand how Jesus felt when people abandoned Him after he got arrested. I am sure He felt very lonely, felt abandoned, judged, despised, and it hurt Him very deeply. I can only imagine the great emotional pain He must have felt when people didn't understand and abandoned Him. And I feel like only He understands my pain.
Having a child with Autism is a very lonely road... Please understand how hard it is for us parents. We need the emotional support, and we cannot do this alone. Please do not judge us, because we are doing the best we can. Educate yourself on Autism, so that next time you see a child having a meltdown in the store, you will be more understanding towards the child and their parents, because that child could have Autism. Please do not push us aside, just because our child has a hard time in different situations... we have feelings too, and need to feel loved and accepted.
In closing, below is a video I found on how Autism is a lonely road...
Wednesday, June 29, 2011
Saturday, May 21, 2011
A Year Of Changes
It's been about a year since I last posted. My life has changed drastically over the last year, and has kept me very busy, I hardly have any time for myself anymore. It's been a year of changes, some positive, and some negative.
Sometimes it is really hard to stay positive, but I really do try to stay positive as much as I can for my families sake, and for my sake. It's just really hard sometimes, as I am sure you can understand. Sometimes I may seem happy on the outside, but inside I feel like everything is falling apart. And that is how I have been feeling the last few months, and especially the last two weeks.
Since I last posted, my kids started school again. Travis started 6th grade, Kyler 10th grade, and Jon 11th grade. It's been a really rough year for two of my kids, and I am glad the school year will be over next week.
Kyler's year has been good, and he has enjoyed his first year of High School. Kyler decided this year that when he graduates in a couple years, he wants to go into Game Design, because of his love of video games. I think this year has been a little hard for him emotionally, because his two brothers have been struggling emotionally. But Kyler holds it together pretty well (better then me), and he has actually been the person I can talk to when things get rough. He is a great listener!
Travis has both Aspergers and Tourette's Syndrome, and was diagnosed at 9 years old. Travis is now 12 years old, and really struggled in 6th grade this year, and so he started regressing. In December, he started 'shutting down' in school, and would not do his schoolwork in class. He would do his assignments in Special Ed, but not in his regular class. He would just sit there, in his own little world, and wouldn't talk to anyone very much. He told me that he sometimes didn't understand the directions to his work, and sometimes he said it was too hard for him, so he just wouldn't do it.
For about three years, I had been thinking about enrolling him in the K12 program. K12 is an online charter school... same as public school, the kids just do the work at home, and attend online classes, and have teachers. They still graduate, and still get a diploma. I kept thinking about how Jr. High would be for him. I knew in my heart, that even though he is 12 years old, emotionally he is only about 5 to 7 years old. He has a huge fear of germs, a fear of being touched, and a fear of people. He also has a lot of sensory issues. And I totally believe he would have gotten 'lost' in Jr. High, and would have never made it through. The older he gets, the more I see his Aspergers showing through. It's like he looks older, but emotionally he is staying at the same age.
In January, I took K12 even more seriously. He wasn't doing any of his work, so he was not learning anything. It was either let him sit in class and learn nothing, or take control of his education so that he had a better chance of learning. I decided to do the latter. So in January I enrolled him into K12, even though there was a waiting list.
We did not have to wait very long, because a month later he was accepted and started immediately! I was ecstatic and scared at the same time. Could I really do this? Could I really be his learning coach? But the fear of Jr. High motivated me to do K12 for my son. I had to do this for my son's emotional sake.
Since starting K12 in February, we have learned a lot about my son. We believe he has severe Sensory Processing Disorder (SPD), and are trying to get him evaluated for Occupational Therapy. I found this out one day, when I heard him cry, "OW!" He had touched something, and I asked him if it hurt him to touch things. He said yes. I asked him if he thought germs were causing him pain, and he said yes.
We are currently working with K12's Psychologist to help our son with his sensory issues and fears. We meet with him via Skype every week. He is AMAZING! He not only takes the time to help my son, but he is teaching us the Fundamentals Of Behavior Mangement. The A, B, C's are Antecedent, Behavior, and Consequence. This type of therapy helps autistic kids, using positive and negative reinforcements. And it is helping my son! He also helps me when things are rough. I have never met a Psychologist so caring before! He has told us that the most important thing for Travis to learn is Life Skills. Life Skills are more important than school. We LOVE doing K12, and plan to do it for the rest of Travis' school life.
Because of how severe Travis' Aspergers is, he may always have to live with us. We have been prepared for that for a long time. We just need to figure out what to do when we die. Sadly, there are hardly any resources for children and adults with Autism where we live, and I do worry about my son's future. We are going to have to figure out things for him in a few years.
Jon has had a rough school year. He was constantly bullied in school, mostly on the bus, and in his Jr. Conditioning class. For about a year, Jon has been suffering from depression, and the bullying issue did not help with things, and actually made everything worse. It has gotten to the point where it is starting to greatly affect not only his emotional health, but his physical health, as well. He had his first panic attack a week ago as I was driving him to school. And it was very scary!
I made an emergency appt. with a crisis doctor at the behavioral clinic, and had to get a doctor's note to get Jonathon out of Jr. Conditioning. Because of the doctor's note, Jon will not lose attendence credit, and since school is almost out, his grades should not suffer. But because of his growing emotional and physical health problems, I am also going to homeschool him thru K12 his senior year next year.
I have spoken to some people that don't agree with me homeschooling my kids. Some have told me that I am 'ruining' my kids lives by doing this, and telling me that they will never 'graduate' (which isn't true). But unless they have walked a mile or a thousand in my shoes, they really cannot understand what it is like having a child or two with disabilities. They cannot understand how heartbreaking it is seeing your child suffer!
They have a right to tell me their opinion (and that is fine with me), but they don't have a right to judge me or my children. I didn't just decide overnight to homeschool them; it took a lot of research, praying, and talking to other homeschoolers before we made the decision. And I know in my heart that it is the best decision for them.
Hopefully things will get better for my family very soon. With warmer and sunny weather coming, and school approaching its end, hopefully things will get better for Jon and Travis. In the meantime, I am trying my hardest to hope for the best and remain positive for my kids' sakes.
Friday, June 18, 2010
Subscribe to:
Posts (Atom)