Tuesday, April 3, 2012

T is for Travel Tips for the Land of Autism

This post is for those who are beginning their journey into the world of autism parenting. OK if you have been here for awhile you can read the post too if you like. But my intent is to let people know exactly what is going to happen in the future...

1. You are NOT going to get divorced because your child has been diagnosed with autism. If your marriage fails it is not because of your child's diagnosis. A marriage fails because there were issues in your marriage not related to your child. Families with special needs children do not divorce more than the average American family.

2. You will NOT necessarily need drugs to handle the day in and day out realities. Now some people may need an anti-anxiety medication to help them. If you become overwhelmed and need help please get it. But do not take medication in a vacuum. If you feel you need an SSRI make sure you get therapy in conjunction with the med. Pills are not a panacea. They are only part of the equation not the sum

3. You should go for therapy for yourself if you feel you need it. It is important for you to understand  that you are NOT responsible for your child's autism. You did NOT do anything wrong. You are NOT a bad parent. You are NOT being punished for anything and neither is your child. Autism just is a factor in your lives. It is NOT a punishment from God or because you had that extra cup of coffee one day or took antibiotics for bronchitis while you were pregnant, or because you do not love your child enough. (Can't believe how that stupid idea seems to be making somewhat of a comeback. But usually only among the truly ignorant.)

 4. You NEED to accept the fact that you will feel stress and that stress can imbue your entire way of thinking. You may not even know it is there. It may rear its ugly head in the most unusual ways, especially when you are doing something that is supposed to be fun. NOT to worry. It is OK. Do NOT beat yourself up about it. Understand yourself and how to pull back, reevaluate your world as you reevaluate your child's. Then pick yourself up and understand that you are allowed to enjoy your life too.

Stress does not have to rule your world. Stress for lack of a better word is a bitch. Well just kick the bitch in the ass and send her out the door. Easier said then done? You bet it is. But it helps to remember that you are entitled to find pleasure in things that give you joy. That is why I began the blog The Rediscovered Self (see sidebar) It was my way of reminding myself about everything that makes me an individual.

It's also why I post dance videos once in awhile on this blog. Remember you are allowed to be happy. Remember you are allowed to laugh. Remember you are allowed to sing.

5. You NEED to read books written by respected doctors and autism advocates. You should make sure that you do NOT glomb onto unproven and dangerous therapies. If it sounds too good to be true it is. In the end you need to use your own common sense and think for yourself. The Helpful Websites page on this blog links to sites and organizations that has lists of books, articles and programs written by experts in the field of autism. Begin your educational journey there. It is important to understand how your child thinks and feels about the world around them. But defintiley come back here for more practical everyday tips. (Hint, hint its why I am here.) Also while experts are a great place to start, they really don't know everything. Unless someone lives our lives, alot of their suggestions really do NOT make too much sense.

6. You need to read up on the law and make sure you understand what you child is entitled to. Try wrightslaw for a great place to start. They have terrific books, dvds, and seminars to attend if you are able.

7. You need to understand that most people with autism have other disabilities as well. You need to find a doctor that can identify which issue goes with which disability. Also you need to understand that not all characteristics of each disability will disappear with therapy. Sometimes its a matter of teaching your child how to cope, process, and handle their issues.

Above all it is important to teach your children to accept the fact that some things just are not easy for them and its OK. It is NOT a reflection on their value as a human being.

8. You need to figure out the differences between occupational, physical and speech therapy. You should understand the differences in behavioral therapies and how they can and cannot help your child. Figure out which would be most appropriate if any for your child. Note: CM1 never had anything but speech and social skills therapy. He didn't need it. Every person with autism does not need every therapy offered. Everyone is different and every person's journey is different.

9. You should understand that working with your child is a day-to-day sometimes moment-to-moment reality. There is no way around this. Yes your life has changed but it is up to you whether you chose to make this a positive or a negative change.

10. MOST IMPORTANT: DO NOT project what will be for your child. DO NOT let anyone tell you your child cannot. DO NOT let others make life choices for your child. DO NOT allow anyone to tell you to throw in the towel. Take each day one at a time and eventually you will look back and see how far your child has come. 

Of course this does not mean you do not plan ahead:whether it is in the guise of a special needs trust, guardian or looking into appropriate programs that fits your child's growing needs (including residential placement if necessary.). What this means is that you do NOT allow others to pigeonhole your child. Too many times I have heard over the years that the boys need to go in one direction and one direction only, but that direction was of no interest to them.

Note on residential placement: I have a friend who finally accepted that her son needed residential placement. She felt deep down inside that she had failed her son. But she did not. The ability for a parent to accept that they need this help and that it is better for your child to leave your home shows an inordinate amount of strength and fortitude. Something I know deep down inside I am glad I do not have to face myself.

Remember your children will decide what they like to do and where they prefer to go in their lives just like anyone other child. It is our job to just get them to that point, just like any other parent.

Yes I know this list may actually make you feel more stressed rather than alleviate issues. Sorry about that. But one thing I have found over the years is that as you learn and as you take control of your day to day and your child's day to day, your stress level does get better. Not that  issues are not always there, I will NOT lie to you. Each stage and each level of development comes with its own challenges. But handling it is doable and you are capable of doing great things and helping your child.

Think of it this way. Twenty years ago when CM1 was first diagnosed there was no place to turn. No advocates to contact. No experts talking about autism or aspergers except Tony Attwood. Dr.Temple Grandin was a whisper that no one understood. The world has come along way in these short decades when it comes to the understanding of, education about, and access for those with autism. Just think of the terrific strides that can be made in the decades to come. I know I do.

Until next time,