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When your child receives an autism diagnosis, many things in your family’s life change quite dramatically. For our family, one of the hardest adjustments was to in-home therapy.
Four to five days a week, we have a therapist, or sometimes a team of therapists, in our home. Its difficult to get used to other adults having the run of your home and, for a few hours, charge of your child. It can turn the equilibrium of parents, other children, and the rhythm of the home on it’s head.
Here are a few tips I’ve learned over the years of in-home therapy:
You Are the Parent, and You Are the Ultimate Expert on Your Child
Yes, these people have gone to school for years to study psychology and behavioral therapy, and you should respect them. They probably care very much about your child and want to help, and are convinced from years of experience and study that they have a plan that will work.
You, however, are the one who has spent years studying your particular kid. If, after listening to a plan and their reasoning, you strongly feel that it’s the wrong approach, politely express your reasoning and ask for another plan, or to delay implementation and to revisit it at another time. It may make sense at a later date, or it may confirm your intuition that it’s not the right plan.
2. This Is Your Home, and Your Rules Apply:
If you don’t wear shoes at home but your therapist really wants to keep her stilettos on, too bad. You get to set the rules in your own home.
In my house, we have a no-cursing rule. One day, a therapist let a string of four-letter words fly and, when she saw the look on our faces, defended herself by saying, “It’s nothing they’re not going to hear in school, anyway.”
That’s not even remotely close to OK, and I let her know that I don’t care what’s said in the general public, it’s not acceptable in my home and it couldn’t happen again. She apologized, life went on and that was the end of it.
3. Should I Be In There Participating?
Maybe, but maybe not. This is a great discussion to have with your therapy team. Generally speaking, there will be a therapist or therapists who work directly with your child, but you should be regularly meeting with their supervisors. The supervisors usually set goals and give the therapist tips on how to best work with your child and reach those goals.
When Hope first began in home therapy, I didn’t participate in her therapy because she needed to develop rapport with the therapists and learn to listen and work with them. If I was in the room, she wanted me to rescue her from work, and as her mommy, I wanted to rescue her. I hated seeing her unhappy or upset, but if I wasn’t in her line of sight, she usually got to work and was actually pretty happy about it.
As she’s gotten older and used to working with her therapy team, I have been included in her therapy and her goals. I now have parent goals and things I work on as part of the team and she handles it just fine. Sure, maybe she tries to sneak in cuddles instead of work, but redirecting her doesn’t result in a meltdown so we’re good.
4. Ask Lots of Questions and Give Your Input:
Ask about anything and everything that you don’t understand. Ask about the goals that are being set, and suggest things you think would benefit your child. Ask them to interpret the data they keep so you can understand what’s happening in session and how your child is doing.
If you think a goal is not useful, ask about the possibility of modifying or even discontinuing it. It’s important to be an integral part of the process, even if you aren’t in the room when actual therapy is happening.
5.Treat the Therapist With the Respect You Would Give a Co-Worker
This one can be tricky, because it’s someone who’s in your home often and naturally, you chat during breaks and when you may be working together. You care about them and they’re seeing the inner workings of your family. Having someone in your home, knowing you and your child in a very personal way can create a false sense of intimacy.
But keep it appropriate and don’t pry, because this needs to be somewhat professional. There may come a point where you need to ask for a change in staffing, and it’s going to hurt if you’ve become besties.
Realize that this is a job and they may choose to walk away and not keep in contact and you need to be okay with that. Don’t put them in the difficult position of unfriending you because they don’t want to mix their personal social media with their professional lives.
There may be a point, say when they move to a different job, where they ask if it would be alright to keep in touch. In that case, go for it, but wait until the appropriate time.
6. Your Child’s Therapist is Only Human – Part 1
There will be days when your therapist isn’t feeling the greatest, didn’t sleep well or has personal issues that are affecting their performance. This happens, and as long as it’s not happening too often, just go with it. No one can give 100% every single day, but as long as their overall performance is good, it’s not a big problem.
7. Your Child’s Therapist is Only Human – Part 2
If, however, your therapist seems like they’re having serious personal issues that are interfering with their ability to consistently perform well, pay attention. Because they are only human, they may have issues with substance abuse, physical health or their own mental health that make it impossible for them to effectively direct your child’s therapy.
I’ve personally been in this situation, and it was difficult because I really liked the therapist, but I could see that it wasn’t an effective environment for my child. Most of all, it wasn’t safe for either one of them. We literally had a therapist fall asleep in the middle of the session and Hope wandered away from her. Luckily, we were at home and she only went as far as the living room, but if it had been a community excursion it could have been very dangerous.
As much as you may hate to “tattle”, sometimes the best thing for the therapist is to step away and take care of themselves first. If red flags are popping up, share your concerns with the supervisor and think about asking for a change in staffing. This is your kid’s chance to learn and progress, and they need to be safe.
8. Keep Your Home Safe and Reasonably Clean
Your house doesn’t need to be spotless. You can have some crumbs on the floor and dishes in the sink, goodness knows I do! But a little messy is different than filthy. Keep it clean enough that it’s not a health hazard.
Correct any obviously dangerous stuff. If you know your kid has a problem controlling themselves with scissors, keep the scissors locked up. Just take care of anything you know your kid can get into trouble with.
Remember that your therapist team members are all mandated reporters. They’re most likely not going to go looking for something to report, but if they see something, they must make a report. That’s the law and their licenses and ability to work in their field depend on following it, so don’t put them in a difficult position.
9. If Your Child Does Get Hurt (and they all do), Document, Get Necessary Medical Treatment and Pro-Actively Inform Your Team Members
I think we’ve all heard the horrific stories of special needs kids who’ve been abused and no one wants it to happen to your child. But if there are unexplained injuries or a pattern of injuries that may seem suspicious, your team is required to make a report. It’s just the law and there’s no way around it.
However, everyone understands that kids just get hurt sometimes. Be proactive with your team about pointing out injuries and letting them know how your kid got hurt. If you don’t know (and sometimes with nonverbal kids or kids who self-injure, we don’t), let them know and document it. It’s important because it may alert all of you to a behavior that actually needs to be addressed in therapy.
Also, if your child is hurting themselves because of self-injurious or repetitive behaviors, ask them to document every incident during therapy times. When it happens outside of therapy, try to keep your own log. It may be very helpful in getting the help your child needs.
10. Give Yourself A Break
If you’re not participating in all or part of a therapy session, take a break. Know that you’re there if needed, but that for the moment your child is well cared for and safe. Read a book, drink your coffee, fall down a Facebook rabbit hole or whatever you do to relax (keep it legal – see above points about mandated reporters). Everyone needs downtime and this might be your only chance for the day. Embrace it!