Listen as I interview a family on how their lives have been changed for the better because of two sons with autism. Lessons, advice, tips and love shared.
The Anderson Family: One Family’s Perspective on Autism
Anderson family Bio
Justin (old) according to the kids. Husband to Tamara for 22 and a half years, and father to four amazing children.
Jordan, age 21. College student majoring in Elementary Education. One of my typical kids.
Nathan, age 20. Mostly non-verbal kiddo on the autism spectrum. We talk about Nathan on our podcast, but he doesn’t comment (mostly because he would just echo back whatever we said).
Jacob, age 16. Jacob is an amazing kid that has high-functioning autism. He just learned to drive last year and is attending high school.
Noelle, age 14. Noelle is our only girl and she is an amazing “second mother” to the group of boys. She is also in high school and is my other “typical” child.
What was it like to grow up with two brothers on the autism spectrum?
Jordan: It was a learning experience. They didn’t grow up doing “normal” activities. He noticed that he couldn’t interact the same with his brothers as other brothers that he saw. He dreamed of playing catch with his brother or wrestling with his brother, but Nathan didn’t want to do those kinds of social interactions. When Jacob came along he was able to finally grow into doing some of these things as he got older.
Jordan explains that he had to learn to interact with Nathan differently. He learned how to show him that he loved him without a reaction.
One interesting thing is that Jordan has always been extremely social and he wanted to tackle and interact with Nathan (who didn’t always appreciate that). I often felt when they were little like I was always playing referee. But looking back I realize that was probably the best thing for Nathan, because he had someone constantly inviting him to interact in the “real” world instead of always staying in “autism’s world.”
Jordan is not intimidated by children with special needs, and he believes this is one of the blessings of growing up with brothers on the autism spectrum. As he is studying Elementary Education, Jordan looks at each child differently and he knows, he “can work with them.” He concludes he has a baseline because he has two amazing brothers with autism. He feels he has been guided to this major so that he can help children with all different kinds of needs.
What is it like to have autism? What goes on inside your mind, and what makes you different from other kids?
Jacob: The problem is learning to relate the “autism world” to the real world. “I don’t know what the normal world is like. All my life I’ve been living just being me.”
Jacob is now fully integrated into regular high school. He didn’t always used to be able to handle this, but has grown to this point. One thing that is important to explain is that there is this real draw or pull to click over to the autism world in his mind or what we call “Imaginations” in our home.
When I asked Jacob what he is thinking about when he does his “Imaginations” he answered that it is kind of a wild card. He explains that he can’t just think of one thing because that would be boring. So, he thinks of lots of things, but he can’t always control where his mind wanders. Sometimes he thinks of recent video games he has played, and creating off-stories in his mind. He also likes to imagine what would happen after the end of a book he has just read or the story before the book begins. Basically prequels, sequels and stuff like that.
That is one of the cool things about having Jacob in our home is that he often thinks outside the box. When he was little he crafted these amazingly creative Super Jacob-man comic books that were so fun to read. He made the illustrations for them and everything. Jordan remembers having Jacob read him those comic books and helping him create the characters and then just watching the story come alive.
I think every child has a super-power. Some of Jacob’s super-powers are learning math or numbers and dates. When he was little we would randomly ask him when people were born or when they died and he would tell us. It was pretty cool. So, this means he does well in history as well. Another of Jacob’s super-powers is music. He can memorize songs much more easily than most kids. Noelle has also noticed how easily Jacob memorizes long classical pieces after only playing through them a few times. She admits she wishes she could do that too:). I think we all do.
“Kids with autism and normal kids have their own super-powers. You just have to find them.”
Noelle enjoys interacting with Nathan because he is so pure and he isn’t distracted by things in the world. Some of the things that make him happy are “drop pillow” when you drop a pillow on him and tickle him. Jordan adds that doing “Star Wars” where you do the Darth Vader’s breathing and then tickle him. He then laughs with this big gut laugh that is so contagious.
Nathan is like a giant 2-3 year old child, but he outweighs all of us and he is taller than all of us, well, maybe Jacob is slightly taller than him now.
It is nice that Nathan now has some very simple words or phrases to ask for certain things. He definitely lets you know if there is something that he doesn’t want by saying, “all done,” “no,” or “go home.”
A Nathan Story
For example, recently we took the family to go watch Captain Marvel. This requires a little bit of tricky planning. We always get seats on the very back row of the theater and we always seat Nathan in the corner. This way he can play on his iPad (with the screen turned all the way down) and not distract anyone.
Anyway, on the way to the movies he let us know, “No movie. Go home.” We tried simple reasoning (with a little bribery). “First movie, then Walmart?” NO! “First movie, then DI?” (DI is a local thrift store where Nathan likes buying used DVDs). Yes! So, he happily walked into the theater and then I took him to DI afterwards. We didn’t used to be able to reason with him, so it is nice to have hit this point.
Changing schedules with these kids is challenging. They do well with visual schedules and so we usually have to write things down to let them know what we are doing. Jacob comments that spontaneous surprises are very hard for him as well, and it bugs him.
A Spontaneous Story–And Why that Doesn’t Work
I shared the example of spontaneously buying tickets to go see the Lego movie while my kids were at school. After I picked them up I told them we were going straight to the movie. Jacob freaked out about this saying, “This is not what we do after school. First we go home and have a snack and then we do our homework.” So, basically I had to try to reason with him and help him try to get past the change to even allow us to go. After the movie when I asked him if he liked it he answered, “Yes, but next time we have to follow the schedule.”
So, spontaneity with these kiddos is very challenging. Jordan says he is very spontaneous too, so Jacob and Nathan act as a counterbalance for the spontaneousness in our home.
This is going to look different in different families and from child to child. So, each family is unique.
When I ask the kids how they feel about our family being talked about in my book, Normal for Me, Jordan answers that he is glad that we can share our story and spread more light. It is important for people to get a look at how autism impacts families and how we incorporate God in our family as well.
Jordan goes on to say that he hopes this will help people see that children with autism do have super-powers and they have desires and hopes just like typical children.
What are some of Nathan’s Super-Powers?
Noelle shares that Nathan is really gifted at doing puzzles. Most people take their time with a 500 piece puzzle, but Nathan can crank it out in about 2 hours.
Jacob adds that another of Nathan’s super-powers is doing word-searches. He does them on his iPad but he will also crank through an entire word search book in about a day. But he has to circle the words in the order in which they are liste. I have to buy word search books at the 99 cent store because we go through them quite quickly.
So, Nathan can see patterns in puzzles and in words and letters more easily than the rest of us. Those are his super-powers.
The Kids Favorite Bible Verses
Noelle–Psalm 46:10, “Be still and know that I am God.” Noelle likes this verse because it helps us remember that we are in God’s hand and that He can help us, and He knows what we are going through. He is always there.
Jordan–Proverbs 3:5-6 “Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.”
Story behind the verse
Jordan was at a point in his life where things were challenging and this verse taught him that I can’t do this, but if I rely on God, He can pull me through it.” The more we give ourselves to Him the more He can guide us to where He needs us to go. He still feels God prompting him and guiding him even in college.
Jordan explains that some people think of God as a puppeteer, but Jordan sees us more as a Pinocchio. We can choose where we want to go, but it is good sometimes to let go and let God guide us.
This is often hard to do when God is putting you on a path that you don’t want to go on, like I describe in the Normal for Me book, when my kids were diagnosed on the autism spectrum. Trusting God at those times is hard, but we do learn a lot. One of the phrases I coined at that point in my life is “Two people can do anything if one of them is God.”
Jacob–Matthew 5:14-16 “Ye are the light of the world. A city that is set on a hill cannot be hid. Neither do men light a candle, and put it under a bushel, but on a candlestick; and it giveth light unto all that are in the house. Let your light so shine before men, that they may see your good works, and glorify your Father which is in heaven.”
To Jacob this means that it is important to share your talents. Going into Junior high this was hard for him because his friends seemed to outgrow his comic books and it became a little harder for him to fit in socially.
Social Interaction Challenges
Social interactions are often more challenging with kiddos on the autism spectrum–and it seems to be more challenging for the higher functioning kids. Lower functioning kids like Nathan don’t really care if they socialize or not, so it has never been a big deal for him. But the older Jacob got the harder it got for him to socialize, know what to say, or how to talk to others.
Jacob confesses that sometimes he just can’t think of words to say.
The advice Jacob would give to parents and other teens is to “be patient” with kids on the autism spectrum. They need love too and are often lonely. Don’t be afraid to help kids with autism out and be a friend.
Another tip: Kids on the spectrum are usually pretty honest–there isn’t much of a filter that goes on between what they think and what they say. They will tell you if you do indeed “look fat in that dress” (whether they should or not).
Jacob’s Advice to Parents of Teens on the Spectrum
Help your kids practice social things like getting someone’s phone number, asking a friend if they want to hang out, how to text properly.
Be nice to kids on the autism spectrum and try not to be super-sarcastic. The reason for this is they often don’t always understand sarcasm. They are sometimes very literal.
Jordan chimes in that he likes to think of kids with autism like Drax on Guardians of the Galaxy. Sarcasm goes right over their heads.
Final thoughts from Jordan
“Be patient with these kids. They are not kids with autism. They are kids with super-powers. Just like in the movies, sometimes the superheroes get attacked.”
Jordan has been doing some classroom observations this semester at an elementary school. There is a sweet girl with autism in one of his classes and she has a wonderful aide that is so patient with her. When Jordan asked the aide what got her into this field, she said, “I see potential in all of these kids.”
“If we give these kids chances to change the world, they will.” Often that change is in our own world.
My final comments: “Having children with autism has changed me for the better.”
Interview with my Husband, Justin
Justin’s advice for parents of children with autism
You are in for a different life that perhaps you had planned. There will be challenges, but there will also be some really great things as well. Having kids on the spectrum can be something that will bring you closer to your spouse as you let it. It can also help you find a different level of love and patience than you naturally had.
Some of the Lessons Learned in Hard Times
- Different people process diagnosis differently. Justin was more quick to acknowledge there was something wrong with Nathan while I lived in denial for a little longer. I was terrified of an autism diagnosis. Justin was more terrified as he realized life was going to be different.
- You will go through the stages of grief. There is also anger. I felt anger. Justin felt cheated out of experiences he was going to have with his son. He felt very sad.
- When expectations have been changed by diagnosis it is hard to envision a clear future.Take things day by day and week by week. Hold on to hope because these kids are amazing!
Some of the Things Justin Learned from our Children with Autism
1. We are children of God. When Nathan has had hard times and we have had to just hold him and pray, God has opened Justin’s mind to see what a special person Nathan really is. There is a big, strong, manly and faithful spirit inside of his body and his disability simply impairs his mind, but it is not who he is.
2. Knowing who your child really is as a son or daughter of God, helps you to have a different level of patience, love, kindness and understanding. This is who they will be forever.
3. These kids are not their disabilities.
4. Pray for this gift from God to see your child from a more eternal perspective.
“Heaven is close when you are on your knees in a really hard spot.”
Another lesson: Be Willing to Try New Things and Support your Spouse
I was the more aggressive in wanting to try new things with Nathan. Justin was supportive. Sometimes we found things that worked, and other times we ruled out things that didn’t work.
Advice for Dads
- Ask what you can do to help and keep on trying. The work you are doing is so important and needs a father’s strength and support to accomplish it.
- This is not a one-person job. If you aren’t pulling your weight, then it is time to step up and be a man. This means talking, listening, offering support, and doing things with your child that are different from what you expected.
- Help your spouse. They need someone to talk to.
- Justin subscribes to a Google wordsearch for “autism” each day. This pulls up any articles that come up on autism. This helps him to see what is going on.
- Join Facebook pages. Sometimes all you can do is listen and offer encouragement, but that is good enough sometimes.
- Give your spouse a “break” and help.
It is also really important to note that full-time caretakers need breaks. If they don’t have a spouse to help them, then they need to get some kind of respite. This is often available through government programs.
Justin’s Favorite Bible Verse
Isaiah 12:2 “Behold, God is my salvation. I will trust and not be afraid: for the Lord Jehovah is my strength and my song; he also is become my salvation.”
This verse means that having Jesus Christ in your life is the only way you are going to be able to accomplish anything. It also means that He will give you strength to be the parent of a special needs child who needs your care.
“God is strong enough there to help us moment by moment as we learn to parent different children differently.”