Wednesday, March 21, 2012

Help Me Hold On

For any family dealing with autism there are many elements that you must have to deal with the stress involved in raising a child on the spectrum. Though I’m sure I’ll forget something in this list, I’ve decided to share what I think may be the most important elements. This list is in no particular order, but each is just as important as the next if you want to help your child cope with their disorder.

1.       Hope – You have to believe that things will get better. We all want our children to be “typical” or “normal”. If we don’t have hope and faith that this is going to happen it can tend to weigh on us spiritually and mentally.

The one thing you must do is find the little things that are happening. I tend to think that Konner is not doing quite as well as he should be. When he is having behavior issues at home or in school I feel like a.) He’s not getting any better, or we are regressing; b.) I’m a bad parent, and the things I’m doing are not working the way they should. What I have to do is step back and realize that we’ve come a long way from where he was last year at this time, and with the proper therapies he will continue to do well.

2.       Team – You have to have a strong support system. This is one of the most important things, and maybe difficult, especially at first. This team should include (but is not limited to) family, teachers, therapists, friends, and support groups.

Family is one of the greatest things you can have. At first this can be difficult, particularly when everyone is in the denial stage. However, once you get everyone on board it can be a life saver. You tend to have everyone looking for new therapies and different information. This can be a bit overwhelming sometimes, but a great help. This is not to mention the support of watching the children every once in a while so that we as parents can have a break. Both Jennifer’s parents and mine tend to step in when we need them and I appreciate them all.

The teachers and employees at the school have to be on board with ways to make a child’s education experience as easy as possible. Let’s face it, school is tough for any child, but for a child with a disability it can be excruciating. All the over stimulation can cause anxiety in a child on the spectrum.

Friends need to be understanding of the way your children are. They are not typical. They tend to be louder at times, can meltdown on a dime, and are in need of special care. If you have friends that understand that it is helpful. You also need them to bounce information off of and just vent every once in a while.

The same could be said for support groups, and they usually turn into friends. I’ve talked many times about our Parents of Autism group, but I’ll say again that they are a great resource as well as a sounding board. We share information, resources, and our life experiences to help others.

My wife is all of the above. I want to say a special thank you to her. She usually inspires the information I write about each week. Even though I love research I usually end up writing about something that she has been researching or talking about. If I have writer’s block she will usually give me something to talk about. She proofreads my column when I’m done so that I don’t sound unintelligent.

On top of this she is the biggest advocate for Konner. She pushes hard to get the best possible therapies and education for him. We (along with Kruz) are lucky to have her in our corner.

3.       Therapy – If you have a child with autism therapy is a must. You have to get the proper training to help them cope with their neurological downfalls. I’ve talked many times in the past, but we have occupational therapy twice a week, speech three times a week, and behavior therapy twice. You have to push children on the spectrum to understand what issues they have, know how to head off the meltdowns, and communicate with them.

4.       Patience – I sometimes hate the fact that I’m probably misunderstood, or misrepresented in my columns. I think sometimes that people think that I’m a great father because I do this research and maybe have a picture of me being perfect. I’m far from it. In fact most of what I research stems from something that I’ve done wrong. The one thing that anyone close to me knows is that I don’t have patience. In fact, until Konner came along I really had none. I lose my temper and yell when I’m frustrated with the way things are going with him at home. I know that this is counterproductive, but sometimes life gets frustrating. I think that’s true with any child, but it seems to be magnified with a child on the spectrum. That is why we have to learn patience. Trust me, I’m still working on this one, but I know that I need to work on this so that’s a start.

5.       Understanding – We have to understand many things. We must understand the disorder or we will never be able to help manage it. We have to understand that the children are trying, and they are just children. Sometimes we tend to push them because we know they can do better, but we forget to let them be little. It’s also hard to understand the difference between what is caused by the autism, and what is “neurotypical”. I only recently learned some of this by watching the way Kruz is.

6.       Determination – You have to have determination to help your child grow to be the best they can be. This is sometimes seen as being pushy, or over protective, or just outright unreasonable. I’ve been accused of all of the above, but I refuse to apologize for doing what I feel is best for my child. If that means that I’m asking for too much then I just call it determination. I’m determined to help my child, and in turn I hope it helps other people’s children.

7.       Information – You have to arm yourself with data. The latest therapies, the best information about advocacy, the best places in your area to find treatments, etc. If you don’t know this information you will never know if you’re getting the best for your children. The internet is one of the best resources we as parents have. You can find so much information out there that it’s hard to know what to use and what to ignore. Books are also great. There are so many of those that you have to pick and chose what you use. However, you must arm yourself with knowledge or you can be missing out on things you and your child need. You also need to know the laws of advocating for your child at school. If you don’t know what to ask for and who to ask you can be missing out on things your child needs to better his/her education.

8.       Love –I saw a sign the other day on my mother-in-law’s facebook that said, “If you think my hands are full you should see my heart.” This is so true for most parents, but for someone with autism it seems to multiply. You spend so much time and effort doing what is right for them that you have a special bond. Don’t get me wrong, both of my children are very important to me and I don’t love one any more than the other. I’m just saying that Konner has had such a struggle so far, and it makes me extremely proud when he reaches milestones with his autism. Everyone must have that love that sparks them to do what’s right for their children every day.

9.       Thick skin – You have to be able to take the criticism of ignorant people in the public. You know that you’ve done what is right to raise your child. Don’t worry about what some uneducated person says because your child is not “typical”. They don’t understand what a struggle it was just to get that child into a public place in the first place. Hold your head up and be proud of where you have gotten.

10.   God – We have to have a strong relationship with God. Often times, especially in the beginning, we search for answers to why this happened to us. We blame ourselves for things that we might have done, and wonder if we are being punished. While many times it can seem like punishment, it also is a blessing, because it makes us stronger people. You have to have that outlet of prayer to help with understanding. This will bring other things into perspective.

I know this isn’t the typical column, and that it may be more open than some that I have written in the past, but I feel that it is where I draw from day in and day out. I hope that it gives a little perspective on what my life is like with Konner, and helps you find some direction in your day-to-day struggles.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.

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