Build your support system at home and explain to them what is autism

With Miss Ashley on a trip to Puerto Rico in 2017

Kids thrive in close-knit communities, and adults have respite in being able to count on other adults to help in child-rearing activities. It takes a village of supportive, loving, strong, good-natured people to raise well-adjusted kids. This is priceless and healthy for everyone: the children, the parents, the caregivers...the world at large. When you have children with disabilities this becomes obvious. However, it seems we, the parents of children with disabilities, don’t know how to ask and receive help. I’m here to tell you, you cannot do this alone. Ask and receive it. Life will be easier and much more joyful.

Because some people with disabilities cannot advocate for themselves, finding people you can trust is of highest importance. This can be challenging because of the fears that circle in our minds about the safety of our children in the care of others. This is where I suggest you do your homework and listen to your intuition as parent; it is always right.

Besides the usual requirements, like self-motivation, capability and maturity, expected from a caregiver (all caregivers, including grandparents, aunts, uncles, cousins, etc…), I would add the following requirements:

A background check
Basic CPR training and First Aid response
Have them watch your child while you’re at home with them for the day. Do this a few times before leaving them completely alone. Once you do, come back home without warning and see how your child is behaving with the caregiver. On the other hand, give them space to create rapport between them. They will have to understand each other without you there.
Give the caregiver all the tools he or she needs to have a successful day with your child. Tell them what works with your child and what doesn’t.
Watch their demeanor, both your child and the caregiver’s. Are they getting along? Does the child listen to his or her caretaker? Is it a successful relationship?
Concentrate on the wins, but if they are not getting along, have a very candid conversation with the caregiver. Ask them how they discipline children they have taken care of in the past. If there is a lot of tension between the caregiver and the child, maybe it’s time to find someone else. As soon as an adult blames a child for his or her behavior, i.e. being belligerent, naughty, “being bad”, that’s a red flag.
Children are not bad, they just need to be taught the behaviors we expect from them. That is why we, the adults, have to be very explicit in the behavior we want to see from them. You’d be amazed at how accepted behaviors vary widely depending on the culture of a society. Pay close attention to this if your caregiver is from a different country. Then be ready for all parties involved to be clear in speech, practice openness, patience, and humility. You never know what you might learn from another’s culture and what you might teach them.

Once you find your jewels, take good care of them. Ours have turned into family (or are family… thanks dad! thanks Beck and TJ!), because they invested so much of themselves into our boys. Hopefully you can find a few people like this.

Teaching a little bit of ABA (or whatever therapies have worked for you) to your support system:

Once you have your support system in place, teach them ABA therapy. If you yourself have not had the chance to use this fantastic tool, talk to your child’s therapists. If you take them to ABA therapy, Speech, OT, etc., ask the therapists what will it take for them to teach you their methods. This will allow you to generalize at home what they have learned in therapy. The point of generalizing therapy is for them to apply it to other areas of life. For example, if your child has been working on eye contact with a greeting, and you catch them doing it with you and others at home or outside the home, make sure you praise them as much as possible so they can understand that this is a favorable thing: “I like how you looked at Michael when you said ‘Hi’ to him! Great job looking at him!” You will see the child will start looking at people when greeting them.

Besides praise, in order to change behaviors or create behaviors in a child, it is important to build a collection of motivators. To do this, you need to observe the child. What does your child love? What will he “work” for?

With Will these were a little hard at the beginning because we truly had no clue what to look for. So, as the good scientists we were, we worked on our observational skills. It’s surprising how much you already know about your kids but don’t use those things to your advantage. This exercise is about to change that.

What does your child love to eat?

Will loved Cheerios and animal crackers.

What does your child love to play with?

He loved to play with flashlights, pressing buttons, coloring, building with wood blocks, Legos, trains, cars. Outside, he enjoyed swings, slides and spinning.

Now, take what you’ve observed about your child and put those things in order of preference, from most preferred to least preferred.

Then observe those things your child does NOT like.

Will does not appreciate loud noises, super bright lights, loud places where the acoustics make it sound louder, busy supermarkets, among other things.

Finally, observe your child’s behavior: when does your child actually respond to requests or his/her name? What is his/her demeanor like? Was he/she happily playing or was he/she starting to get frustrated?

Pay attention to what was happening right before the behaviors to see what is causing them.

I remember Will getting so frustrated that the laws of physics were not working the way he wanted them to when he could not fit a square plastic piece in a round hole. Luckily, I caught him early enough to help him breathe, showed him it didn’t work there and pointed to the square hole. The plastic piece went into the little house. Sigh of relief. Tantrum averted.

Yes, there is quite a bit of data that needs to be compiled before getting started using ABA, but it helps if everyone knows this information to be able to be consistent with the therapy.

The clearer you are on the goal and how to get there, the faster and more successful the shift in behaviors can happen. Some goals will be different for different settings, others will be generalized and needed in all environments. For example, when speaking to someone in the American culture, you look the person in the eye, regardless of the place you happen to be at (a skill needed in all environments), but the volume of the voice is different in a library than it is in the comfort of our homes (an awareness of expected social behaviors in different locations).

Also, every household has its own set of rules, spoken and unspoken. If they are clear and reasonable, they should be easy to follow, and life could be led harmoniously under the same roof. Of course, this is real life and that’s not always the case, but we try. The point is to be clear and decide which ones can be trained as second nature through routine, which ones are worth following through with the kids, and which ones we can just let go.

For example, Martin and I are very clean people, almost OCD. We both like our things clean and in their rightful place. We eat at the table or in the kitchen. We do NOT take food in the rooms or around the house. The boys were expected to do the same, but we had to teach them what was expected. “When it’s time to eat, we all sit down on our chairs. See papa? He’s sitting in his chair while he eats. Can you show me how you sit on your chair and eat sitting down like papa?” When they did it, we made a big deal of it. “I LOVE how you’re sitting down and eating like papa!”, while grabbing their hand and making them high five me. Yes, I’m still super silly and make them laugh with my celebrations, and because of it they are proud of themselves for getting the message, and doing what was requested of them. They got attention for something they did and it was a great celebration. They now feel like they can do that more often; they want to do that more often. We positively reinforced them into sitting down on the chair. They now understand that It can be fun to sit on the chair, and eat with the rest of the family.

I cannot stress enough the importance of routine. Yes, they have to be reminded often, but they know what’s expected of them. Everything flows much more easily once you establish the behaviors that are most important to you, so that when issues do arrive, you can rely on their knowledge of the routine you have already instituted at home.

And we are all happier for it.

Finally, teach your support group to be cool, calm and collected during moments of high stress. This will create the space the child needs to be able to calm down with the caregiver.

I’ve found that it’s best to get down to their eye level and reassure them that all is well. Sometimes, it’s a full blown tantrum, and all you can do is wait it out. We ask them if they need a hug, and that usually works for us. I’ve even gotten a “thank you, mama” from both Will and Stevie after holding them while the emotion fizzled out.

As they calm down, the caregiver should give them options of what they CAN do at the moment so they don’t feel like the situation is completely out of their control.

“I REALLY want to play video games, mama,” big fat tears rolling down his cheeks.

“I know, bud. But you know we don’t play video games in the morning before school.

So yes, you can play video games, but not until this afternoon after school.”

“But mama, I REALLY want to play video games.”

“I know, bud. I already told you my answer, so I’m going to ignore your question now, ok?”

“But mama, can I play video games?”

“What do you think, bud?”

Silence. Looking at me in the eye, tears strolling down the cheeks, but breathing is deepening. All of this happens while I’m hugging him, or he’s laying in his bed and I’m laying across him, holding myself up on my forearm, but putting some pressure on him to help him relax. Sometimes I use the weighted blanket too. He calms down and finally accepts the verdict. Sometimes it takes a little longer time than others, but we’re finally able to redirect by reminding him he’ll have it later in the afternoon, that he needs to work at school first and he gets his reward at the end of the day. (Doesn’t it remind you of your own reasons to work...paycheck, anyone?)

Having big emotions is not easy on anybody and having someone yell at you or look at you disapprovingly while you’re having a difficult emotional time does not help. In fact, it creates more suffering and resentment between the parties involved… all because both parties want to be right. With children, it’s better to have peace, know when to apologize to them and know when to let it go. Not everything needs to be a fight. That’s why you pick and choose what is worth fighting for, and you need to follow through.

Kids on the Autism spectrum tend to see the world in black and white and take almost everything literally. They need to be taught how to act and behave in the world step by step because they don’t assimilate the social information naturally as their peers do. Their brain is not developed in that way, and it’s up to us to teach them so they can be successful living in this world.

This is why it’s important you and your child’s caregiver are clear on goals and expectations for the child. When it comes to behaviors, the most important thing is to ignore the ones you don’t want and praise the behaviors you do. You also need to be the model of the behavior for the children. This takes practice, but it’s absolutely worth it.

And it’s okay not to get it right every single time. Be just as loving and caring to yourself as you are with your children. We are all trying and we’re all alright.

All is well.

A HUGE thank you to Miss Ashley for being our amazing caregiver in the early years for both boys, and to my dad, my sister and my brother-in-law for babysitting for us the nights that mama and papa need to have a date night! And thank you to all who have babysat for us at some point in time, Miss Gaby, Miss Tess, Miss Rebecca, Miss Kiran, Miss Shelby, Miss Emily, Mr. Nick (and everybody else that has watched the boys but I forgot you helped us out at the time). Love you guys!!!