Some of my favorite passages:
I hope that by sharing my story, I can help men find a way to open up about my emotions that we often don’t or can’t express, and women can understand more about the different ways deal with their troubles.
Holly and I were so blessed with our wonderful babies, and that there were so many opportunities before us.
Little did I realize then that R.J.’s diagnosis of autism would shake us down to that foundation, test me and our marriage, and bring me into a kind of fatherhood nothing in my life had prepared me for.
A few months before they hit that 2 year mark, Holly took the twins in for a check up with our pediatrician. They’d had ear infections and were both coming off a course of antibiotics. Holly asked the doctor if he would delay their next round of immunizations because she thought loading them up with that much medicine while they were still a bit weak from the antibiotics might be too much for their little bodies.
The pediatrician brushed off her concerns as those of an overly cautious first-time mom. This didn’t sit right with Holly,
Something about this disturbed what she calls her “mommy gut”, an instinct that moms have that goes beyond what professionals say.
She asked him if there was any way he could break up the measles/mumps/rubella vaccination so that they would not have to get such a potent cocktail all at once. The doctor said that that couldn’t be done.
Besides, the nurse said, the twins were behind in their immunizations. Part of the purpose of this visit was to get them all caught up.
The nurse looked at her like she was psycho mommy, and told her to relax while she took R.J. in to be weighed.
Holly was sitting in another examining room holding on to Ryan (her other daughter) , when she heard R.J. screaming , “No! Mommy!” She ran to R.J. and saw that the nurse had given him the MMR plus the second hepatitis B and the polio vaccines. The nurse said that it usually was easier with the parents out of the room.
Maybe it was easier for the nurse, but for the next 8 years, nothing about R.J. would be easy for our family.
That night R.J. had a terrible fever and started shaking violently. She called the pediatrician and he said to give R.J. some Tylenol. She did and R.J. had a terrible reaction to the Tylenol and we rushed him to the emergency room. We believe that he went into some kind of toxic overload shock. After that, we didn’t hear the words “Mommy” or “No” for about 4 years.
There is a lot of controversy in the medical community about what causes autism. Researchers and doctors reject parents’ claim that vaccines, particularly the MMR, can trigger the disorder. Many parents believe that the mercury-based chemical thimerosal, which is used as a preservative in vaccines, reacts dramatically in the immature immune systems of some children and triggers autism.
Within a week of the shots, he stopped responding to his name. Shortly after the shots, R.J. withdrew.
(They went to meet with the head of the school) “We’ve talked”, the head of the school said, “and we think your son is unteachable.
(We quickly took R.J. out of that school).
That’s what it takes to be a great dad to the child you brought into this world: being the person who helps a child grow into the fullness of who he is.
Something happened between Holly and me after R.J.’s diagnosis. When we found out R.J. had autism, it felt like losing a child. We had had years to dream the dreams that all parents have for their children, and then that child was snatched away.
Both of us had our moments of Why Me? Why does everyone else’s kid get to be normal and mine is not?
After I put aside my ego, and really opened myself up to understand what autism is, I taught myself not to impose my dreams upon R.J., but let him express his own interests at his own pace.
After their children are diagnosed, some dads just shut down for a few years. For many, their work like goes to hell too. It’s not that they can’t deal with their child’s autism. It’s that they can’t deal with themselves. In the beginning, many fathers see their child’s diagnosis as their personal failure. If there’s something wrong with my child, I am less of a man.
It’s as simple as the fact that you were thrown this curve in life and that’s too bad, but you have to deal with it. Overcome it, or let it overtake you. It’s not what you expected and it’s not fun, but it is what it is.
Do you remember when you first held that child in your hands moments after that baby entered the world? I don’t know how you felt then, but one of the big things I felt was that suddenly my life wasn’t just about me anymore. When we got the diagnosis and I had come through my denial, I understood that I had just been fooling myself when I thought that in the delivery room. I still wanted it all to be about me, and the perfect family portrait I imagined presenting to the world.
It was only when I got myself out of that comfy chair and started to understand our real situation that I also understood that life had handed me an incredible opportunity.
My dreams didn’t have to die.
In fact, they are bigger and more powerful than anything I could have imagined before. I had to let go of a lot in order to grab on to the reality of my child and of his world. I’m saying this as a man who has been humbled by the raising of his children.
I stand in the world as a better man with a bigger heart and much more to give.
Holly and I estimate that we spent at least $160,000 a year on the different therapies, services, unconventional medical treatments, and aides for R.J. in the early years of our journey with autism. I know this is an incredible amount of money. It probably sounds completely ridiculous to you if you are unfamiliar with what it costs to really help a child with serious special needs.
(They decided to address the parents at R.J.’s school and this is what they said)
For those of you who do not know, R.J. is on the autistic spectrum. He’s come a long way and I want you to know he is a great kid. Just like your kids, he wants to be included. He wants to go to birthday parties and playdates. So don’t be shy about asking him, because we know he’d be happy to go.
Mark (R.J.’s aide at school) was in the schoolyard one day and he saw R.J. surrounded by a bunch of kids from his class. They were all laughing hysterically. A few of the kids were holding their sides. There was R.J. right in the middle. Mark edged over to the group quietly to see what was going on without disturbing the scene. What he heard shocked him. The kids were prompting R.J. to say foul words like “poop” and “dookie”. He was going along with it without knowing what he was saying. Mix in his echolalia (the endless repeating of a phrase) and he was like a real live windup toy, repeating it over and over. One one level, R.J. felt like this was a big success. He was the center of attention, getting a big reaction, even though he didn’t really know what was so funny. Of course, on another level, it was heartbreaking that they were exploiting his vulnerabilities, as kids sometimes do.
I’ve played stadiums in front of 90,000 screaming fans, and I’d take that any day over trying to explain autism to a classroom of 4th graders.
(Then they addressed the entire student body of the school and this is what they said)
“How many of you have heard of the word ‘autism’?”
“How many of you know a child who has it?”
All the hands were down.
“You can put your hands back up, because R.J. has it”.
“Do any of you know what having it means?”
“What it means is that his brain is wired in a different way, and because of that, it’s harder for him to communicate. So talking to people, starting off a conversation, is something that R.J. isn’t very good at. Have any of you noticed that R.J. doesn’t come up to you very much?”
“Most of you do that all the time and don’t even think about it because it’s not hard for you. That’s very, very hard for R.J., but it doesn’t mean that he doesn’t want to talk to you. I bet if we went around the room here, every one of you could say that you are good at some things and not so good at others, couldn’t you?”
“Guess what? R.J. can tell you the name of every president and vice president of the United States in order”.
“And he can tell you the name of every single active player on every team in the NFL or the NBA. Even the NHL.”.
“But making friends is really hard for him”.
“Sometimes when you call him, he won’t answer. You have to call him more than once because that’s just how long it takes for him to get the message.”
“And if you’re his friend, he’ll always like you for exactly who you are, not for the sneakers you’re wearing.”
I watched the kids around him now and saw how they embraced him.
They understand him and they care of him.
When I say “take care”, I don’t mean that they baby him. They get him. They include him, because that’s what friends do.
Federal law requires that every child in this country be allowed a “free and appropriate public education”. If your public school system isn’t able to meet your child’s needs, then it is obligated to fund his or her education at a private school that is equipped to challenge and nurture children on the spectrum. There is often friction between parents and a school system about exactly what constitutes “appropriate” education. What a parent sees as appropriate might seem outrageous to a cash-strapped school district. Parents often find themselves squared off against a sprawling bureaucracy with impenetrable procedures that are designed to intimidate families and keep them from asking for what their child needs. Parents often even have to sue the school district in order to make it cough up the resources that a child on the spectrum is entitled to.
Tips for making friends
Let everyone know. The school will know your child has autism, but their schoolmates and their parents must know too. Being embarrassed or secretive about it further isolates your child and doesn’t give the others a chance to extend a hand. Explain your child’s limitations, verbal or otherwise.
Talk in a language kids understand.
When you talk about autism to the other kids, make sure that you describe it in terms that are not over their heads.
Remind the parents that your kid has social needs too. Don’t be shy about encouraging other families to invite your child along. I realize that this might seem awkward, and a little embarrassing, but it’s your child’s social life we’re talking about here, not yours. A little nudge from you might get a parent to invite your child over, and a new friendship might take root from that invitation.
Make sure the other parents know your child’s routine. You want any playdate or outing to be a success, so that your child will be asked back. To make this possible, the other parents have to be fully informed of the things that set your child off.
Create “family” playdates. If you put together an afternoon event and invite one of your child’s friends family along, the other parents can see how you interact with your child. This may take some of their hesitation away and can expand your child’s social possibilities.
Participate in school outings. Driving a group of kids in a car pool to the museum or going on a nature hike with the class gives you a chance to watch the way your child fits in with peers. This can help you understand where your child needs a little coaching. You might also identify a potential new friend in the group.
Practice skills that will help your child socially.
Tips for discipline
Be clear and complete when you want children to do something (or stop doing something). “Stop it” isn’t enough for them to get it. Be specific about the action you want them to stop doing. Say it 2-3 times.
Eye contact is important.
Repeat instruction and get a verbal acknowledgement.
Give plenty of warning. Start a half hour before you expect children to obey the command.
Rules are rules. Enforce them!
In working with your child to find his or her internal drivers, you’ll learn what activities or foods you can take away as an effective punishment for bad behavior or noncompliance.
Try to visualize the tantrum as a process and ride it out without it getting the best of you. If you let frustration or anger show, it will make everything worse.
To be effective, punishment must be swift and short-lived. Special needs children can have a hard time connecting the punishment to the action that triggered it.