I know what I want for Mother's Day. I don't want flowers, jewelry, or a new outfit. I want the autism to go away for one day.
I want Nate, Nick, and Noah to be typical kids....just for a day....every year on Mother's Day would be great. I would like to know what it's like to parent "typical" kids. I'm sure I could do it...it can't be harder than what I already know....
I want Nate and Noah to talk to me. Really talk to me...not reciting lines from their favorite episode of "Elmo's World" or Clifford". I want to tell them the story of how Tim and I met. I want to tell them how happy I was on my wedding day. I want to tell them how I loved each of them the moment I found out I was pregnant. I want to tell them how Tim was so afraid to hold them when they were first born...he said they were so small!
I want them to tell me if they're happy. I want them to tell me what they like and don't like. Does Nate like it when we call him "Naters?" Why doesn't Noah like macaroni and cheese? He's never even touched it. Do they know they are different? If so, does it bother them?
I want to be able to have a conversation with them about their futures. I want them to know that I have a plan. I want them to know that the decision for them to not live at home forever was difficult, but I believe it's for the best. I want them to know that they will always have each other (and Nick). I want them to know that I will never stop fighting for them.
Saturday, May 11, 2013
Wednesday, May 1, 2013
Embrace it....Own it....
If your child is developmentally delayed, embrace it. Don't try to cover it up, accept it. After you accept it, own it. That is who he/she is. Now your job is to make sure that they get the best and most help they can.
If you have health insurance, call and ask about your home health benefits. With these benefits, the boys are receiving Speech Therapy and Occupational Therapy in home and without a co-pay. All it took was a prescription from the pediatrician. The office faxed it over to a company I found in our area and the therapy company took care of the rest. I found out about this when I called to ask about my benefits for the Autism Bill. I just happened to ask the customer service representative "what else do I have?" It may only provide with 20 visits a calendar year, but that's perfect for the 12 weeks of summer when they are only in school part time.
I also use our Department of Mental Health case manager. Every state has this is some form or another. Look up Department of Mental Health in your state. The wheels in the state machine move very slowly, but I have received help there. You just need to call now.....not in a few months.....There will be a lot of paperwork to fill out....I usually fill it out with a carton of ice cream and a spoon (no bowl needed). Just do it...you are a taxpayer...your kids deserve the benefits.
Find activities in your area for special kids. We are lucky to have one in St. Louis, TASK (Team Activities for Special Kids). They offer a variety of sporting and leisure activities. So does ARC (Association for Retarded Citizens)...I know they need a better name. Through these organizations, my boys play soccer, t-ball, bowling, kickball, attend cooking class, and attend overnight camp all with kids just like them. For once, they are not the minority. They are with their peers. Also, if your child attends a camp for typical kids, the camp may be required to provide staffing to help your child be successful. We found this through the Recreation Council. This enabled Nick to attend a camp when he was younger.
Also, look into the Americans With Disabilities Act. Because of this, my boys pay admission to many places, but their care giver does not. I remember the neurologist telling us to take the boys out, "They will gain something from every outing." This allows us to send them to places that charge admission, but helps financially by not paying for the staff member. I usually call ahead to places and when I mention ADA, they are more than happy to help us.
Finally, there is no shame in your child attending a school for special kids. It may seem scary at first, but they can be great places. Sending Nate and Noah to the self-contained school in our area is the best thing we ever did. They are in school with their peers. They do not stand out...everyone in that school is a special kid. They do great things. There comes a time when you need to decide what is more important, life skills or academic knowledge? Tim and I have always tried to be realistic about the boys. They don't need to know the Presidents of the United States, but they do need to be able to operate a microwave. In s special school, these life skills are very important and taught in a wide variety of ways. The boys are seeing kids that their lives will be intertwined with, whether it's at an outside activity or further down the road at a group living facility. We wanted to immerse them in their community.
I know it's a big job.....trust me I know. Don't worry, you are stronger than you know......and you can always find someone who has already walked down this road.
If you have health insurance, call and ask about your home health benefits. With these benefits, the boys are receiving Speech Therapy and Occupational Therapy in home and without a co-pay. All it took was a prescription from the pediatrician. The office faxed it over to a company I found in our area and the therapy company took care of the rest. I found out about this when I called to ask about my benefits for the Autism Bill. I just happened to ask the customer service representative "what else do I have?" It may only provide with 20 visits a calendar year, but that's perfect for the 12 weeks of summer when they are only in school part time.
I also use our Department of Mental Health case manager. Every state has this is some form or another. Look up Department of Mental Health in your state. The wheels in the state machine move very slowly, but I have received help there. You just need to call now.....not in a few months.....There will be a lot of paperwork to fill out....I usually fill it out with a carton of ice cream and a spoon (no bowl needed). Just do it...you are a taxpayer...your kids deserve the benefits.
Find activities in your area for special kids. We are lucky to have one in St. Louis, TASK (Team Activities for Special Kids). They offer a variety of sporting and leisure activities. So does ARC (Association for Retarded Citizens)...I know they need a better name. Through these organizations, my boys play soccer, t-ball, bowling, kickball, attend cooking class, and attend overnight camp all with kids just like them. For once, they are not the minority. They are with their peers. Also, if your child attends a camp for typical kids, the camp may be required to provide staffing to help your child be successful. We found this through the Recreation Council. This enabled Nick to attend a camp when he was younger.
Also, look into the Americans With Disabilities Act. Because of this, my boys pay admission to many places, but their care giver does not. I remember the neurologist telling us to take the boys out, "They will gain something from every outing." This allows us to send them to places that charge admission, but helps financially by not paying for the staff member. I usually call ahead to places and when I mention ADA, they are more than happy to help us.
Finally, there is no shame in your child attending a school for special kids. It may seem scary at first, but they can be great places. Sending Nate and Noah to the self-contained school in our area is the best thing we ever did. They are in school with their peers. They do not stand out...everyone in that school is a special kid. They do great things. There comes a time when you need to decide what is more important, life skills or academic knowledge? Tim and I have always tried to be realistic about the boys. They don't need to know the Presidents of the United States, but they do need to be able to operate a microwave. In s special school, these life skills are very important and taught in a wide variety of ways. The boys are seeing kids that their lives will be intertwined with, whether it's at an outside activity or further down the road at a group living facility. We wanted to immerse them in their community.
I know it's a big job.....trust me I know. Don't worry, you are stronger than you know......and you can always find someone who has already walked down this road.
Subscribe to:
Posts (Atom)