A Place to Start

We would like to provide you with some information about things that we think have been beneficial to Nicholas and often our other kids as well. We are not experts on High-Functioning Autism, but we are becoming experts on Nicholas and how he is affected by so many aspects of this diagnosis. The things we list below may or may not be helpful but when Nicholas was smaller it would have been so great to have some things to try, a place to start. These ideas come from a combination of parenting classes, Occupational and Speech Therapy sessions (all 3 of our children have had speech issues, and 2 of 3 have attended Occupational Therapy), trial and error, friends and lots of books. We’ve tried to share some of our experiences with these ideas. We hope in some way these might be helpful in your journey!
These are everyday ways of doing things. You may want to try some of these ideas, just don’t expect immediate changes. This is 13 years of collected information – you might not want to try to absorb it in one sitting.


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Start With Small Steps
Sign Language
Tell, Show, Do, Review
Love
Teaching What Is Intuitive to Others
Literal
Plan A Crisis
Food Challenges
Activities
School
Learning Opportunities
Talking About Autism
Therapies
Follow Through
Research Services
Teaching Opportunities
Plan Transitions
Organization Helps
Be Amazing
Be Calm
Discipline
Family and Friends


Start With Small Steps
Take baby steps, most things that are overwhelming can be broken down.
E.g. Our son hated changing shoes and clothes. Once we understood that we would buy shirts in a couple of sizes so if he was a size 3, we might also buy size 4 and 5. We would wash them a few times and there was less of a transition. With shoes we would do the same. Before he grew out of the old shoes we would get out the new ones, often identical but one size bigger. We might say we are going to put them on and count to 3 and then we can take them off. 1,2,3 and they were back off. The next time on, count to 5, off. We would also leave them lying around in his space. Don’t get me wrong – we frequently didn’t know if he understood but that takes us to the next item. top


Sign Language
To the degree we could, we always spoke to him like we did the other kids. We needed to say it more frequently and often with gestures but always with respect and authority. If he could take it in with more than one sense that was better.
E.g. If we would say stop, but also make the sign language sign for stop, he could see it and hear it. I know this sounds like a lot of work, but nowhere on this page have I said it would be easy. Although we probably only learned 5-10 words in sign language they went a long way! Sign language can also become another way for your child to communicate with you if they are non-verbal. We used words like stop, quiet, I love you, and drink. If it turns out this is something your child enjoys, they may also benefit from improved fine motor skills as they work to make the sign letters.
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Tell, Show, Do, Review
When I was in restaurant management school I learned a system for training staff. In an adapted form it turned out to be very helpful in working with our son. What I learned when teaching a task or skill was a system of Tell, Show, Do and Review. So in its new form, it would be (1) show and tell them at the same time, (2) have them try it, maybe with your help, maybe not depending on the task, (3) ask them to tell you about it. Obviously, they will only do the last part if they are verbal. Then praise, praise, praise!
E.g. If you were showing them how to tie shoes (in our house we use the bunny ears method) you would explain what you were doing while you tied their shoes, then have them start by just trying to make a loop or a different simple step so they feel successful , then have them try to explain. They do not have to get everything right. It’s just learning instead of being helpless.
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Love
Don’t believe they don’t show love, it just doesn’t look exactly the same. If you do it on their terms and they are not overwhelmed, they love in the deepest way.
E.g. Although Nicholas will scream “get off me”, at the top of his lungs, he really loves being part of a monkey pile with his brother, sister, and dad. We know this because if we don’t engage him, he will come and join on his own. Sometimes hugs and kisses also have to come on his terms.
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Teaching What Is Intuitive to Others
Plan on teaching things that most people know intuitively. (How to show their love, getting and telling jokes, learning about idioms.) Our son is very literal and that is an on-going challenge.
E.g. We walk around telling silly puns, then we say “Get it?” We try to get him to explain and if he can’t we explain it to him. Now he loves Laffy Taffy – there are jokes on the back!
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Literal
Accept that they are literal. Be willing to explain idioms when you use them or just say what you mean.
E.g. If you say things like “don’t beat around the bush” or “don’t bite off more than you can chew” and it is taken literally, imagine how confusing that must be.
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Plan A Crisis
Plan a crisis. Sounds odd, doesn’t it? Have the crisis or meltdown take place at a time that works a little better for you. The intent is to help them eventually “go with the flow” and be less anxious about change.
E.g. Our son didn’t play with toys the first few years of his life. When he finally started to play he had a peg board with rainbow colored pegs that he loved. In his world, order was a requirement and at this point rainbow order was his favorite thing. So when I explained this to his OT she instructed us to take one of those pegs out of order. I thought to myself, you have got to be kidding me! He has cried for the better part of the last 3 years and you are telling me that one of the few times he’s not crying I should upset him on purpose??? Well, I had to trust her, so I picked a quiet time when I didn’t have to do anything else and I pulled out that orange peg. I tried to make it a game, but let me tell you he did not think there was anything funny about it! He screamed! We did it again and again, each time treating it as a game and believe it or not, eventually it was a game and there was no more crying and it was the start of his flexibility.
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Food Challenges
Work on their eating habits. Kids cannot live on chicken nuggets alone or whatever their food choice might be. Again we do baby steps. Take into consideration the possibility of dietary issues that have not yet been diagnosed.
E.g. Even if they just start with touching it to their tongue or tasting a small bite it’s a start. Make them feel good about trying it. At our house we required our son to try something on the table when we had a family meal. It was most often dipped in ketchup but we were getting there. I think for Nicholas it was a sensory issue and once we got his mouth a little less sensitive he could eat a wider variety of food.
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Activities
Be engaged in their activities, know the people involved. You may want to call ahead to help educate them about what works well and what doesn’t. I would sometimes just call to see if when I mentioned special needs they were enthusiastic and helpful or if they seemed uncomfortable. We didn’t want Nicholas in places that didn’t want him there. Our son was usually in a blend of extra activities, some designed for special needs kids and others designed for typical kids. If you have siblings or a friend close in age some things allow you to do semi-private lessons (like ice skating). This allows them to participate with another person but not in a large group setting. It’s also less expensive than private lessons.
E.g. Our son currently plays baseball on an amazing Challenger League (special needs baseball). He has also participated in typical soccer, swimming lessons, and is hoping to join the football team in high school.
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School
Know your kids teachers, be supportive of them. Help out at school and in the classroom if you can. Email is a great way of communication because they can read it at a time that works well for them. Don’t assume it’s always a good time for them to talk with you. Be respectful of their time, they have a lot to do each day. They will likely want your input but remember at school you are in their classroom and they run the show. Even for your child. Ask for what you think might be helpful but try to do it in a way that isn’t demanding. With the school district that might be a different story – sometimes you need to be more forceful. Act intelligently; know what your child has a right to before you go in. There are books written specifically about IEP’s. We were fortunate to have a school and staff who wanted to give their best.
E.g. We have had amazing relationships with his teachers. In IEP meetings we have tried to clearly express his needs, thinking them through before we attend the meeting and understanding all of our needs might not be met by the school.
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Learning Opportunities
See every situation and person as an opportunity to learn something. Think outside the box. It would, I suppose, be a form of networking.
E.g. The OT tells you about a Chiropractic Neurologist, who refers you to an online reading program that works to help your child’s visual tracking improve. While on that program you see a reading program. Don’t be so goal oriented that you miss all of the opportunities along the way.
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Talking About Autism
This idea is definitely not for everyone. I am very comfortable talking about Autism so I do. To us it isn’t a label but a diagnosis. Whether you say a person has Autism or is Autistic we don’t personally believe there is a big difference. We would never want to offend anyone but to us it’s the same as saying someone is diabetic or has diabetes. It doesn’t by any means define who you are, but it certainly has an impact.
E.g. By being willing to talk about Autism, my husband and I have been able to help educate people, share our support, create a support network for ourselves and now hopefully with this site create a community of people who can get support and proceed in a positive direction to help others.
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Therapies
Do not under estimate the value of Speech, Physical and Occupational Therapy. They can do Amazing things. It is never too early (or too late) to start. Our son started Speech and Occupational Therapy at age 2, even before his diagnosis of Autism, which helped him make significant progress. There are other therapies that can also be considered. Music and Equine (horse) therapies to name just a couple. There are also significant costs involved which are frequently not covered by insurance. If you can afford it, do it! Even some therapy can go a long way in helping. We have had therapists who helped with some basic ideas that could be used consistently at home. Once you have an initial evaluation you have better information to work with. If you truly can’t afford any therapies, read some books about therapies that might be helpful and never underestimate the value of the internet!! You can also ask therapy offices if they do discounts for out of pocket payments or if they know of any financial help that might be available.
E.g. In our son’s case his muscles were very low tone. OT and Horse Therapy were used to increase his strength. His early Speech Therapy helped significantly. At this point we work more on conversational skills. Occupational Therapy has also helped with self-regulation, balance, hand writing, concentration and significant sensory issues.
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Follow Through
Follow through on therapy at home. It’s like learning to play piano or any new skill. It’s really hard to improve if you work on it one day a week for 30 minutes. If you practice every day you will get better, faster. 10 to 15 minutes a day can make a huge difference.
E.g. A statement we would constantly see on reports which came home from therapy was that one of the most beneficial things for Nicholas was that we followed through with therapy suggestions at home. Home is where the real benefits of therapy develop into successes.
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Research Services
Stay well-informed about how your state is required to support you. That is just something you need to research as it varies greatly by state and diagnosis. Be your child’s biggest and best advocate. Most, and probably all, states have some form of support for children with some disabilities.
E.g. We live in a state where our son had special needs preschool in public school from age 2-5. We were also eligible for therapies and respite care. Funding for this support is always subject to change.
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Teaching Opportunities
See a lot of your day as a teaching opportunity, after a while it will become second nature. It might be working on speech or social skills or manners, whatever situation presents itself that day.
E.g. I was on the phone with my sister when my son walked in and said “I’m done outside”. I asked my sister to hold for a second and explained to Nicholas if he was done he needed to go out and tell the people he was playing with that he was going to stay inside. That would not have occurred to him but as he learns, some of those things are becoming a little more natural, but they clearly need to be taught over time and repetitively.
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Plan Transitions
I can’t emphasize enough that you need to keep talking with them. Whether you think they understand or not. Whether you think they are paying attention or not. Whether or not they will make eye contact, keep talking. Say what you mean, keep things simple at first but keep talking. So when things like a transition are coming up (leaving for school, bedtime, etc,) you reach a point where you can say, we are leaving in 10 minutes (or bedtime) please shut down your game or finish the page in your book. If you were reading the news paper and suddenly someone got out of their seat and said “it’s time to leave right now” you would probably feel agitated and disrupted too.
E.g. At our house the rule is get completely ready for school first then you have free time until we need to leave. We usually have a 5 minute warning before we leave. It used to be 10 minutes and then 5 minutes but they don’t need that much anymore. Remember we are also working to foster independence. Sometimes a check list is helpful for them and you, again you can eventually work away from that as they build good habits.
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Organization Helps
Stay organized, stay sane. I know easier said than done. I’m not a consultant, I really have three kids and three dogs and a husband and a house. You really will benefit from it. It takes a while to make things a habit but there is a definite pay off. Use calendars, plan ahead, do simple things like pick out clothes the night before. Minimize unexpected events but expose them to new things, just try to let them know ahead of time. Sometimes things just come up, get through it the best you can try to learn what works and doesn’t for your kids and move on. If my husband was traveling I would plan to shop for the week on Sunday before he left. We would have 4 gallons of milk in the fridge because nothing would be worse than running out! When Nicholas got to preschool, I made the most of the couple of hours I had. I really tried to do my shopping then. The stores were completely overwhelming to him.
E.g. A couple of years ago my brother died suddenly in a snowmobile crash. We had to leave the kids home and head out the following day. My wonderful brother-in-law (who has no children) happened to be in town and offered to stay with them. Even in my dazed state, I have to say I thought he had gone insane, I literally laughed out loud. After some discussion, it was decided we would leave him for 5 days with three kids, my calendar and friends phone numbers and very limited instructions. Because our kids have a fairly organized life the kids sort of knew the ropes they and everyone survived with no permanent damage, even Uncle Tim was ok!
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Be Amazing
Don’t try to be like everyone else. As a family, we are not. This goes back to my great book title – Typical Isn’t All It’s Cracked Up To Be. We don’t have to be typical to be amazing or to be happy.
E.g. As a family we have learned to slow down and enjoy things. We used to not go out to eat if it wasn’t a kid’s restaurant where Nicholas and for that matter my other kids, could be up and moving. Instead of fighting it, we learned it could be fun to hang out at a pizza place and play with your kids (I love skeeball!) Now we do different things together but they still need to be what works for both our son and our other kids as well. You may need to get creative but they will probably have something in common.
Hiking, swimming, movies, board games, the zoo (if your zoo isn’t really expensive it might be worth getting a yearly pass, then you don’t feel like you have to stay all day to get your money’s worth) even some family time on video games. We like Family Game Night for the Wii. Make sure everyone is engaged in the activity. It goes back to baby steps; if your child doesn’t like to hike, start with a 3 minute walk from your house; if they can’t hold a game control do it with them. Help them be an important part of the family, but remember they may soon get tired or overwhelmed. Just a little is a great start and next time, try it a little longer.
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Be Calm
Find what calms you and what calms your child. Don’t compare your children to others. That’s tough on everyone. Appreciate them for who they are, even though that might be challenging when they are frequently crying and unhappy. If you start to take away some of your stress by stopping and thinking about something positive their worries might start to decrease as well. Less tension is always better.
E.g. I realized by about the time Nicholas was 4, the more stressed I was the more anxious Nicholas was. It was like there was a direct line between us. If I could get to a calm place and work with him it would be ok, if I panicked or raised my voice it just got worse. Let me tell you that sounds better on paper than in real life because when he was 4, I frequently panicked and sometimes raised my voice because I had no idea what else to do. Redirection was a huge help to us. At 3 or maybe 4, he couldn’t complete sentences or understand most of mine, but boy could he spell!! So he learned to spell all the colors. When we got in a place that made him uncomfortable, most often that was my daughters preschool where he would have to wait and it would get loud and busy as the classes were released, but it was pretty much everywhere else as well, I would have him spell. I would say green, he would say G-R-E-E-N, you get the idea. It accomplished two things – it gave him something he liked to focus on and when others looked on they saw something amazing. Instead of a screaming, fearful little boy they would see this little blond three year old who was obviously quite smart spelling words!
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Discipline
This is another tricky one, some level of discipline is still required. We had such a hard time determining badly behaved two year old from complete sensory overload. I think ages 2-6 were the hardest for us in this area. Discipline to us isn’t the same a punishment. It’s just an appropriate consequence for an action or guidance in the direction of being able to control one’s self better. It is being given the tools required to become a responsible adult. This doesn’t mean we never raise our voices. We are far from perfect parents, but we do spend time thinking about how we parent as opposed to just reacting.
E.g. At about 3 years old Nicholas would get really frustrated and hit anything that happened to be in front of him, or sometimes himself. We needed to stop him. We gave him something appropriate to hit. We had a big therapy ball in our family room. The family room and his bedroom these were the places he spent most of his time. When he would get angry we would say you need to hit the ball if you are angry, but we couldn’t just say it we would have to move him to the ball and do hand over hand. Over time it worked. At this point anger is almost never an issue. He still gets easily frustrated but for the most part can remove himself count to three and come back better. Like many of the other suggestions to get any results from this you need to be really consistent . There is still no guarantee but there is also certainly no harm in trying. While we were working on this with Nicholas I said to a friend “I am so tired”. Her response was, “Of course you are. Everything we do once you do three times. You tell him and do it with him and tell him again.” I had and still have great friends who are nothing short of miracles in my life.
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Family and Friends
Surround yourself with people who get it. I don’t mean Autism, I mean life. Spend time with family and friends who love your children and you, for exactly who you are, people who will support you, even though they might not understand what each day in your life holds, people who will lift you up. You also need to accept their help and support. If grandma wants to babysit, let her! The more time they spend with your child the less of a mystery the different aspects of Autism will become. Let them see the good. I had a friend who used to call my son, “my little Bill Gates”. I got through years thinking of that compliment. She understood he was brilliant!
E.g. My husband has 4 amazing brothers and I have 2 great sisters. I could go on and on. We live thousands of miles away from everyone but remain close to our immediate and extended families. I can’t say for certain that they all know how to understand what goes on with Nicholas but they all work hard to have their special relationships. His uncles on both sides need to call him up and tease him about who will win a football game, his cousins might just check in. His aunts might send a card or come to visit. Encourage people to get to know your child on a deeper level. The surface stuff will start to vanish and they will get to be touched by what is deep inside.
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