Parents, We Need You.

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First, yes, it’s been awhile. A lot has been going on over here, including some big decisions that will probably be announced in the June site update.

A recent situation has caused me to take a hard look at the idea of “parent buy-in.” It’s a bit of a buzzword/concept in my field, and it centers around the goal of getting the family invested in our therapy work. Too often, I see parents who simply hand their child/children off to the therapist/interventionist/specialist and basically say, “Here, fix them.”

The truth, parents and guardians, is that we cannot “fix” your child. First of all, many of us don’t really like the idea of “fixing” anyone. It implies that the individual is broken, inferior, or not up to some invisible set of societal standards. Second, we are in your home/community or you are in our office a few hours a week.

In order for your son or daughter to become the best that they can be, they need YOU.

In order for us to be able to find those sparks in your son or daughter, we need YOU.

I always try to tell families at the very beginning that this is a team effort, and everyone must be invested in it. The clients I worked with who blossomed the most were the ones who had the support and follow-through from their parents/guardians, their siblings, and even extended family. The families who were sponges, hungry for information, skills, and concrete examples…these were the cases that led to more fulfilled lives. No, the child didn’t get “fixed.” The child got love and acceptance, and that made them work at becoming more confident, loving, and ready. All children want to receive acceptance and praise from their parents/loved ones, I truly believe that.

When the families meet us at the table, ready to make the world of their family unit a better place, amazing things happen. I’ve seen it over and over again.

I have a saying when meeting families: “My end goal is to essentially be fired because you don’t need me anymore.” I don’t want your family to become dependent on me or my team. I want you to apply learned skills and build relationship bonds so that you don’t need my “expertise” anymore.

Us professionals want to see the child AND the family unit flourish and thrive independent of any services or interventions.

This needs to be everyone’s goal.

black and white boy child childhood
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Tuesday Thoughts

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I think Tuesday posts are going to be the days where all of my not-quite-realized post ideas are going to go. So, without further adieu…

  • Reading the thoughts of a young adult on the spectrum (via Facebook) has been one of the biggest eye openers for me, because he brings up situations and viewpoints that I never conceived of.
  • The autism world with regards to therapeutic approaches is becoming increasingly marginalized. It’s like being in a circle surrounded by base camps…and you are either not invited to them, or you don’t quite agree with them. Interesting position to be in…and a great launching space to create your own base camp.
  • A parent told me that she was confused when someone asked her what her son’s “special gift” was. She shrugged and replied, “I told her that I didn’t know what it was or what she meant.” I glanced at him, looked back at her, and thought, “Spatial intelligence.” I don’t really see them as gifts, though.
  • I follow several families on the @sparcguidance on Instagram. They are all composed of pure awesome, and I love that they are sharing their journeys. It’s not easy and not for everyone, but I appreciate it.
  • A 2-minute questionnaire has been developed by researchers at Rutgers University that could identify autism in children much younger than the average age of around 5 years old. You can read more about the questionnaire here and here. This is fascinating, especially since it appeared accurate across different socioeconomic groups. I think that has a lot to do with the fact that the questions are in layman’s terms, as opposed to overly academic or analytic jargon.
  • Finally, a multiple intelligence note: As I’ve mentioned in my post on spatial intelligence, I’ve noticed that quite a few of my clients have been above average or exceptional in this category, regardless of sex, race, etc. It is not the easiest intelligence to spot, though. So here is a tip for parents: Someone with high spatial intelligence is often good at building, but they may be also really good at directions and orientating themselves to areas. They are really good at games that focus on spatial strategy (like Blockus or Tetris-like games), and can probably help with putting things together, be it a Lego set or that new chair for the living room. The key to remember in any of the intelligences, though, is that the person enjoys it. If they love it and are good at it, you have potentially found their purpose.

Programing Note: We’re on the lookout for guest bloggers, so please drop us a line at sparcguidance@gmail.com if you want to write something about autism, multiple intelligence, life purpose, etc.  We’re also working on our first workshop on multiple intelligence and uncovering them! We will give more information once everything is finalized, but we are definitely excited about it!

Have a great week!

This. This is why SPARC exists.

This is why I do what I do, why I want my organization to be successful. Stories like this are the reason why. Your entire life can change when you identify your life purpose and passion.

20-Year-Old with Autism And His Mother Open Bakery to Employ Others On Spectrum

Here is the link to the bakery: No Label at The Table

 

To read my MI Series, which discusses theory of multiple intelligence and the different areas of intelligence, click here. Or, catch up on the first two blogs of the series, Spatial/Visual and Interpersonal.

Thursday Thoughts

After dealing with hurricanes threatening most of the people I know, some family crisis, and a generally busy schedule, I have emerged from oblivion!

The article that pulled me out of, well, life was a somewhat familiar trope for me in this field: the hunt for a “cure” at any cost. This time, though, the focus was an approach I had never heard anything negative about until now.

I have heard about the Son-Rise approach off and on throughout my career. For some reason, it was often interchanged with the DIR/Floortime approach, which is different but seems to have a similar thread of being more naturalistic. I noticed, though, that I didn’t see many families in my work attempting this approach. I went on to study Floortime and ABA more closely, becoming an advocate of the Early Start Denver Model’s combination of the best of both worlds.

This article, though, really looks at what happened when autism therapy became a business. It aims mostly at Son-Rise, but the pattern is pretty familiar for any family who has uncovered every stone in a search for answers. They really go to all corners for their children, and sometimes people/organizations take advantage of that by suggesting that they have all of the answers.

I wanted to say this much: Parents, I know you see many of us as experts, the ones to come in and “fix” everything. I do not see that as my job, and I know others who feel this way. I want to empower YOU, because at the end of the day, you are the ones who love and are with this individual 24/7. Yes, I know lots of terminology. Yes, I have seen lots of clients and gained great insight into the world of autism. I still need YOU. Your child/teen/adult still needs YOU. After every therapy session, homeopathic oil blend, or new breakthrough, it still comes down to you and them. In all honesty, I learn more from my clients than any book, training, or degree program can possibly teach me. They are some of the most amazing people I have ever met, and so are their families.

Anyway, coming off of a really great session yesterday, I wanted to share that. The session wasn’t great because the client had “perfect behavior.” It was great because everyone (me, the parent, and the client) learned something.

I feel like I’m rambling randomly (and I probably am), but I wanted to share those thoughts. The article is below, and opens up quite a dialogue about the Son-Rise approach in particular. Oh, and shout out to one of my former coworkers, Andrew Shahan, who is featured in this article and who I count as one of my favorite trainers. 🙂

A ‘cure’ for autism at any cost

The Value of Connection

I saw an article today on the results of a study about music therapy and autism. The study indicated that “improvisational music therapy, compared with enhanced standard care, resulted in no significant difference in symptom severity based on the ADOS social affect domain over 5 months” (Bieleninik L. et al. JAMA 318, 525-535 (2017).

This is a bit of a letdown to many in the music therapy world, but it is also a call to action of sorts. Some of therapies outside the normal scope of the traditional autism therapies (including music and listening therapies, dance therapy, drama therapy, etc.) can take a lesson from this study.

By improving and adjusting the therapies to accommodate individual differences, focus on connection/engagement, and folding the parents/family into therapy, there may be clearer and more positive results. I have noticed this to be the case in many of the more “traditional” and clinical therapeutic approaches.

I have seen clients improve from these more art-related therapies, but a key component to client success lies not necessarily in the therapy itself (though it may certainly help, of course). The key is connection and relationship. In an article about the study on spectrumnews.org, it was noted that other studies have indicated that having a connection with the music therapist improved clients’ social skills. Working on creating a connection is, in my eyes, the most important part of any autism therapy. If you have engagement, you will naturally be able to do more with and for your client.

Below is a direct link to the article about the study. I would love to hear others’ thoughts about this. Have you tried music therapy before? Did it help? What was the experience with the music therapist like?

Music therapy for autism shows minimal social benefit

 

Quick Tidbits

I’ve been having my own form of writer’s block for the past few weeks. I can’t tell you how many blog posts I have started that now sit idle in the Drafts folder. I will get to them, I promise. In the meantime, I decided to give some practical tips that I’ve learned/been reminded of by some of my new clients. We can always use tips, right?

  • For some of my older clients on the spectrum, a lot of anxiety is reduced when they are given the whole picture or situation first. We tend to assume that they will not be able to process everything at once, but giving information in little pieces (especially if they are directions) can also make them anxious because they don’t know what’s next. What I’ve learned to do is to give the overview first, and then each step afterwards as we hit it. For example: “Okay, we’re going to make lemonade today. We’ll need lemons, water, and sugar so that we can mix them together.” Boom, I just summarized the entire recipe. After I did that, the client walked me through the process, asking when he needed clarification. While he is what would be considered “higher functioning,” he still needed the anxiety reduction.
  • Many kids love the feeling of independently doing and choosing for themselves. Even if it is not a true choice (say, choosing between your two choices), the illusion of choice can be a great asset. I try to give my clients choices whenever I can. Sometimes they bounce the ball back into my court for me to decide, but I offered them the choice, and that goes a long way.
  • To my fellow workers: it is really easy to assume that a parent is just being bossy, lazy, whatever trait you believe you’re seeing that week. Try to step into that parent’s shoes. Most of us get to go home at the end of our day. For those of us without kids, we go home to stillness (most of the time). For our clients’ parents, their challenges and triumphs continue long after we’ve gone home. It’s just a few hours a week for us…it’s 24/7 for them.
  • That being said, workers, know your boundaries. You have to take care of yourselves before you can take care of anyone else. Our clients can pick up when we’re tired, hungry, or just plain pissed about something…and the result is usually a less than stellar session. Parents, we go through a different kind of burnout. We are not just worrying about the well-being and future of your child; we often have several more families we have to put equal energy and time into (or dozens more if you’re a case manager). We’re not trying to be rude or mean if we hold our ground on session times or availability. We’re trying to make sure we can continue to be the best that we can be for all of our clients, including you.
  • Workers, think outside the box. Not just with your clients, but also in regards to your job/position in an organization/your own practice. What are your strengths? How can you use them for the betterment of your organization/practice? Are you doing things that others are not? If others are doing it, do you have a unique spin or voice to bring to the table? Is there something you see in your client that others don’t?
  • This one goes to everyone: have fun. I’m serious. I work mostly with kids, and I see so many instances of family and workers alike getting so wrapped up in the goals and the data that they forget that they are dealing with a kid. I celebrate when a client has a “kid moment.” In that moment, autism wasn’t some horrific veil hanging over their heads (according to everyone around them). Autism was a way to really feel the sunshine and the wind, to appreciate every color dancing across a bubble. Autism led to a laughing fit to end all laughing fits. I’m not trying to downplay the challenges of this type of neurodiversity. It is a tough road to tread, nearly impossible at times. What I am saying is to really be in the present when it comes to those moments where the child is just being a child. I dare say that maybe, just maybe, you may want to join them there.

Passed Over, Brushed Aside

This article is why I do what I do. I have seen first hand how signs of autism that are clear as day to me and my client’s family are brushed aside by professionals. This seems to especially be the case with minority communities. I really want to change this. I want families to be educated and informed, but I also want that for the professionals that see and treat them. Sometimes you have to go beyond the diagnostic criteria and trust that maybe, just maybe, the family has an idea that warrants a closer look.

A family’s yearlong struggle finally results in son’s diagnosis of autism

The Bridge: Siblings

In working with child and teen clients, I have seen other professionals address the subject of siblings in one of two ways: inclusion or exclusion.

Thankfully, most of the time there is some degree of inclusion. Siblings are an intricate part of the everyday life of a child, and when the child is on the spectrum, brothers and sisters can take on a much more important role.

In most of my experiences (but not all), the siblings have been neurotypical. They are having a host of emotions regarding their autistic brother or sister: they are at times protective, sometimes jealous (because of the attention their sibling gets), often a bit confused as to how they can help, but almost always coming from a place of love.

For workers and professionals, they can present a challenge. The siblings often want to be involved in some way, particularly if the therapy is a play-based approach like I tend to use. They see the “cool” things I’m doing with their sibling, and naturally they want to be a part of it. Completely cutting the sibling out of the play (or worse, telling them that I’m only there for the client) can have negative results; the sibling may start acting out or “sabotaging” the session. Of course, if they have too much freedom, they could undercut whatever the worker is trying to do.

Here are some of the things I have done to incorporate the siblings into the sessions in a constructive way:

  • Sometimes, they just want to play with the “new” toys (if a worker brings toys) . With one family, I started giving the older brother his “own” toy/play station at the start of the session. This greatly minimized his tendency to snatch toys from my client.
  • Doing activities that all of the siblings (and ideally all of the family members) can participate in equally. Active games like ball games (kicking/rolling back and forth), art activities (fine motor skills treasure troves!), and board games (turn-taking, social interaction) are great ways to have fun, work on skills, and involve everyone.
  • Enlisting the siblings to help their autistic brothers and sisters. I honestly believe that kids want to be loved, accepted, and praised, and this is a great way to fold that in. I have seen parents do this really well, and in a variety of ways. The easiest way is having the sibling model some behavior or routine that they would like the autistic child or teen to pick up on. The praise they receive for their help does a lot to raise the self-esteem of both siblings.
  • Cooking can be a great activity, especially if any or all of the kids/teens show an interest in doing so. Interventionists have created some great cooking sessions where they have made everything from sandwiches to stews with the family. Make sure to use safety first!

I always try to talk to the siblings in some context, even if it is just a check-in while writing up my note or setting up. They often feel left out when their neurodiverse siblings have special friends coming in to work with just them. Looking at it from the neurotypical sibling’s viewpoint, I can see why they would feel isolated in that sense. I also make a point to commend the parents who have fine tuned the delicate art of giving all of the kids quality time, because it is by no means an easy feat. I encourage my fellow professionals to do the same. 🙂

 

The Extra Bridge: The Workers Listen

I’m adding in an extra chapter to this series because of what went down on my personal Facebook last night.

Knowing that some of my Facebook friends are practically ABA zealots, I decided to write a segment I sometimes call “Unpopular Opinion.” In this one, I put the ABA community to task for not appearing to listen to the autistic adult community when they give their critiques and suggestions for ABA and how it is executed. I also noted how ABA has monopolized the autism field, leaving little room for any other approaches. I then ended with a dig at the new healthcare bill by Republicans, adding that if it goes through then all of this may be a pointless rant. Then I sat back and waited for the incoming torpedoes.

They didn’t come, at least not exactly.

One person did come on defending ABA as the only evidence-based practice. I then explained down thread what I called the “Catch-22 Carousel.” ABA gets funding and put onto insurance because it is evidence-based, which takes away from funding for other approaches to conduct research to…prove they’re evidence-based. That aspect of the conversation stopped soon after I made that point. When they asked where the research was, I pointed them to Stanford’s Annual Autism Symposium, which takes place in about two weeks. They genuinely seemed interested in attending.

What really made the conversation, though, was the intrigue from others over other parts of the post. I had a great conversation with one former coworker about the effects of the healthcare plans on autism services (which included our job prospects), and another conversation about offering more support to autistic adults and what that should look like (employment/workplace support was high in priority). Just about everyone agreed that there should be a variety of therapeutic services for families and clients to choose from, and to not have that is a detriment to our overall goals and why we entered this field to begin with.

Most of my Facebook friends are ABA enthusiasts, so their silence did not surprise me. I was actually impressed with the ABA Specialist who wanted to hear more about the research into the other approaches, as opposed to just ignoring or shutting down when I made my point. Another friend from back home mentioned the PEERS approach, which I had never even heard of. My rant led to a new approach (at least new for me), and I am now going to go learn more about it.

Some of the parents, meanwhile, simply liked, loved, or thanked me for the post.

The conversations that sprang from that post made me think beyond my viewpoint, go and research some things as I was replying to others, and led me to new ideas. Sometimes speaking your truth can lead others to do the same, and sometimes, everyone listens and learns something in the process.