One of my favorite books to read to our children was The Bike Lesson by Stan Berenstain. The book is about daddy bear teaching his son various lessons, but he keeps messing up. The drone that resonated throughout the book is…”That is what you should not do. So let this be a lesson for you”. So, on that premise, I share this with you. These are some of lessons we learned the hard way.
- Don’t drink alcohol to drown out the stress. Having a child with Autism can be exhausting and stressful. I fell into this addiction. It started with a glass of wine at night, and accelerated to a full blown alcohol addiction. It negatively affected my whole family. It’s not worth it. Instead, talk to your physician about options to treat anxiety and depression.
Related article: http://www.drugaddictiontreatment.com/addiction-in-the-news/addiction-news/stress-of-parenting-an-autistic-child-can-lead-to-addiction/
- Don’t expect every family member or friend to accommodate your child. Everyone has different ways of coping with Autism. Some of our friends/family did not want to deal with it all, or even acknowledge it, ostracizing our entire family. We experienced this over and over through the years. Often, I felt loneliness and anger thus, more negativity. Instead, find ways to let friends and family know you need their support. Don’t be surprised if they don’t want to be involved. Let it go. It’s their choice to make. Be pleasantly surprised and blessed by those who DO support you and your family.
Related articles: http://www.snagglebox.com/article/autism-family-acceptance http://www.goodtherapy.org/blog/why-do-friendships-fade-for-so-many-autism-spectrum- parents-0616155
- Don’t assume your other children will know how to appropriately respond in stressful situations, especially those which occur in public. I have numerous stories of siblings’ reactions. (I will share them in a future post.) I learned how to prepare my children for stressful events as they arose… eventually. I wish I had known this from the beginning.
Here are a few examples:
- Before a family outing at a restaurant, talk to your other children. Tell them something like: “Tyler” could get upset and frustrated while we’re eating. If so, Dad will stay with you guys so that you can finish your meals, while I will take Tyler outside to help calm him down. I will wait with him in the van until Daddy pays and you all can join us.” (or whatever may be your plan.)
- If your child has a history of bolting (or the formal term eloping), have plans for the search in the event he/she does. Here’s an example: Tyler would bolt for several years about 2-3 times a month. (the topic of another future post.) Our talks would go something like this: “I will call 911. (to oldest child) You follow me and we will search for Tyler in the neighborhood and surrounding areas. (to 2nd oldest child) You stay home and watch over your baby sister. Don’t leave the house. We will return as soon as possible.” In that instant, everyone knew their rolls and executed them with great calm. I was always amazed at how mature they could be during those events.
- Before going into a store, let them know the plan. “We’re about to go into (store). As we all know, Tyler may become upset and disruptive. If the situation becomes uncontrollable, we will all leave and get back in the van. Whatever items you may already have in the cart, we will leave. We will come back again and resume our shopping as soon as possible. I need your help to remain calm. Remember, it doesn’t matter if people stare. Just ignore them. They don’t understand. I am proud of you guys for understanding your brother.”
Related books for siblings:
I Have Needs Too! Supporting the Child Whose Sibling has Special Needs by Elizabeth A. Batson
Views From our Shoes: Growing up With a Brother or Sister with Special Needs by Donald Joseph Meyer
Oh Brother! Growing Up with a Special Needs Sibling by Natalie Hale and Kate Sternberg
Living with a Brother or Sister with Special Needs: A book for Sibs by Patricia F. Vadasy
- Don’t avoid basic daily hygiene for your child because of screaming and outbursts. Children with Autism can experience extreme sensitivity to hair brushing, hair cutting, tooth brushing, washing hands, hair shampoos, or getting nails cut. We realized this almost immediately. I must admit that I am a Mom who was adamant that these basic hygiene tasks were a priority, not to be skipped – EVER. However, every night one of us would have to hold little Tyler’s head still, while the other brushed his teeth as quickly as possible. He screamed, chocked, cried and squirmed. I dreaded it. I knew it had to be done, but I admit there were a few times I chose to put him to bed without brushing for the sake of peace. This was the same reaction to the other hygiene tasks I mentioned. Thank goodness, I usually had the courage to follow through. Thus, through several years of persistence, Tyler began to calm down. Now, at age 24, he accepts it as normal, I suppose.
- Don’t assume your Autistic child will understand transitions such as moving, changing school/classrooms, new siblings, visiting relatives, etc. My child did not understand and it caused many unnecessary outbursts of frustration. It took quite a few unpleasant situations for me to realize this. I learned to plan and make a Picture Story. Keep it simple. Add pictures as much as possible. Show it to him/her once or twice a day beginning a week or two prior to the event. When appropriate, let them have it to look at on their own initiative. Talk to your child’s teacher. More than likely they are familiar with making a Picture Story and will be happy to share some examples with you.
- Don’t avoid having pets in your home. The initial reaction may be negative, but this could become one of the favorite family members your child needs. At the very least, your child will learn tolerance of animals and not fear them in the future. We had pets from the time Tyler was born and continue to have them today. (In the future I will post about some funny stories about Tyler and our pets.) As a result, Tyler is extremely tolerant of animals in general.
Also, you may want to consider Assistance Dogs. They can be helpful for some children with Autism.
Related articles: https://www.autismspeaks.org/family-services/resource-library/assistance-dog-resources
- Don’t avoid going out with your spouse/significant other because you haven’t found anyone you know willing to watch your child. Most of Tyler’s growing up years, we lived far away from extended family. Our relationship would have greatly benefited from a few nights out together. We didn’t feel we had that option most of the time. Ask your child’s teachers/Para-pros for sitter recommendations. Go to the nearest High School and talk to the director of their “Peer-to Peer” program. These programs offer opportunities for mainstream HS students to help their fellow special needs peers. These students may want the experience of helping with your special needs child and may welcome the opportunity to make a little extra money for sitting. We did this and found the most amazing student willing to help. Megan was a light in our lives for many years and she remains a close friend of our family. Her bond with Tyler was nothing short of a miracle. (I will be making a post about this amazing peer helper experience in the future.) Of course, I highly recommend that you ask the director of the program for recommendations. Interview perspective peer helpers. Trust your instincts. You may find the perfect match like we did!
Related article: http://www.friendshipcircle.org/blog/2012/03/06/why-your-school-should-have-a-peer-to-peer-program/
- Don’t avoid theme parks because you are concerned about outbursts. We did miss out on quite a few chances to go to a theme park. We lived about 45 min. from Six Flags over GA. As soon as I realized they offered accommodations for special needs family members, we began to venture out more. Disney World was accommodating as well. Call ahead and ask for special needs accommodations. You may be required to bring medical documentation of your child’s special needs. In most cases your family will be able to avoid long lines and enjoy the park.
Here is a link to amusement parks accommodating to special needs kids:
- Don’t refrain from taking pictures and videos just because things don’t seem to be going well. As I share with people about experiences we had, both good and bad, I wish I had as many pictures/videos of the times that weren’t so great as I do the good times. The few that I have that document the difficult moments, I treasure. They are a reminder of the struggles and what our family learned from them. Those bonding moments eventually brought our family closer. Even if you take the pictures/videos and put them aside for now, I think you may be glad you have them for remembering the moment.
- Don’t stop trying new solutions to ongoing problems, even if all the previous “solutions” ended up being mistakes. Chances are, you will eventually happen up on the perfect solution that uniquely works for your circumstances.
Here are a few examples:
- Tyler ate his shirt collars for several years. (there will be a blog about Pica behavior soon) After exhausted attempts at stopping this behavior, I learned that Bandanas are made of very strong cotton material and are difficult to tear. So, I bought lots of them and he wore them to school over his shirts…problem solved!
- Tyler climbed up on and jumped from a high entertainment center in his bedroom. Nothing would stop him it seemed. Then one day, I looked at the bottom of my husband’s office chair mat. It had spikes-not sharp ones, but they would cause discomfort. I turned it upside down on top of the entertainment center. It looked like crap! But it worked! He-he, form follows function. Well, until he decided to put a comforter up there and jump off anyway. But that’s another story. My point is, keep brainstorming and be creative. It’s worth the effort.