By Lyla N
It’s challenging thinking about exactly what to say for this final part. Not because there’s a lack of content but because I’m slowly realizing this could be a book. In the first part I addressed our journey, and in the second part I addressed how to access Medicaid, so it seems fitting that this last part should be about maintaining personal well-being and time management. Before we get into this, please note I’m not saying there’s one specific way to find your peace, simply that this is my method. For me it’s about empowerment—for my son, myself, and my family.
When it seems impossible say, “I’m possible.”
If you are reading this, you probably know all about neuroplasticity and could write your own book on it, but just in case you are not familiar with this term, let’s talk about it. Neuroplasticity is how the brain rewires itself. It was once believed that neuroplasticity could only happen in early childhood. While there’s a plethora of reasons why doing this massive amount of intervention work is better during early childhood, the scientific community now understands that neuroplasticity can happen at any time. This isn’t to say that a disability is an inability, where if you just learn a new skill, your brain magically fixes itself, but it is to say that how someone learns can help bridge the gaps in information processing. There are many ways to achieve it—for some it’s medication, for others it’s surgery, but my experience with it is theraputic intervention. An example of this is using motion to teach speech,which is one of many reasons why music therapy is so effective. Or applying kinesthetic tape or swimming in warm water to spark proprioception to help with walking. Proprioception, otherwise known as kinesthesia, is your body's ability to sense movement, action, and location. This isn’t to say that you would become the next Nobel Prize winner, but that anyone can learn anything when the method of teaching is meaningful, successful, compartmentalized, and most of all, enjoyable. Neuroplasticity is personalized, and it depends on a ton of factors and can be blocked by things such as frequent seizures, toxicity, or a punitive environment. For us, crossing midline (moving one limb to another side) is among our daily task list for occupational therapy, so one of the ways we do this in a fun way is with my son’s drums. He loves his drum set, and it’s something he frequently goes to. We combine speech exercises by counting the beats or singing a song. There’s no prompting for words; instead when he chooses to vocalize, we praise him with his favorite activity of “ups,” which is getting thrown in the air. So speech and occupational exercises can share the same space while also being fun. Neuroplasticity is also achieved by being consistent, and it integrates strengths and joys to address challenges. Another l way I’ve discovered to do this is by inviting everyone to have a seat at the table.
The Individualized Educational Plan (IEP) is a plan or program developed to ensure that a child who has a qualifying disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services. The IEP is a legal contract. The school is required to provide the services and supports the document’spromises for your child. But teachers and administrators are busy—and human. Sometimes details are overlooked or forgotten or sometimes a diagnosis will overshadow how your child experiences their disorder. . Part of your role as your child’s advocate is to make sure your child is getting the services and accommodations outlined in the IEP. A way to empower your teachers is to help them craft a strength-based IEP. This not only addresses how your child learns (for example, my son needs a special cushion and a box in the classroom), it also addresses how the disability looks for your child. For instance, if your child is classified as nonverbal but can make sounds, can point to objects, uses sign language or a communicative device, then all of that needs to be in the IEP. My son needs motion to help regulate and help to deal with stiff joints, so a part of his IEP is the requirement for movement, but also a part of his IEP is his joyful nature, his sociability, and how he thrives with structure and routine. This approach helps educators integrate recommendations from the private therapists but also your observations at home. There are a ton of resources on how to advocate for a Strength based IEP from Idaho Parents Unlimited (IPUL) as well as other parent advocacy groups across the states.
If it isn’t fun, it isn’t fun.
Possibly one of my favorite humans is online parent speech facilitator Marci Melzer. Her words, “If it isn’t fun, it isn’t fun,”have validated my decision to fire the therapists that simply weren’t connecting with my son. My son has challenges, but he’s overall a very happy child. So when he was screaming during speech therapy, that told me we were on the wrong path. It doesn’t mean they aren’t talented, but in each of the therapeutic modalities there are multiple methods of working with kids. Sometimes people don’t connect, and sometimes it’s just the wrong modality. My son doesn’t respond to prompting. In fact for him, he gets triggered by that pressure. There’s also the problem with unhealthy redundancy, where you have two therapists specializing in one modality, but they conflict because the path they use to get there clashes. So it becomes convoluted and confusing. The end goal of therapy is to help empower your child, so if you and your therapist can resolve this and your child benefits that’s wonderful. If there is no resolution, than it’s okay to seek another path, whether that means a different therapist, a different practice, or even parent facilitation. .
What’s not ever okay is for a therapist to threaten you with an ultimatum or to claim that you are harming your child by seeing another professional. When you are in doubt about what’s happening in your child’s speech therapy, you can always call The American Speech-Language-Hearing Association (ASHA). ASHA is a professional association for speech-language pathologists; audiologists; and speech, language, and hearing scientists in the United States and internationally. I actually had one of ASHA’s directors return my call after one of my ex-speech therapists was trying to use my son as political pawn and was lying about the methods used by another therapist. Tragically these things happen. However, now we have multiple practices of therapists who all work fantastically together; each practices their own modality, and that modality fits exactly what my son needs. For speech my son has an exceptional feeding therapist who works on building the muscles of his mouth. She works closely with our alternative and augmentative communication (AAC) device speech therapist. Lastly, he has a therapist in a different practice who also works to help him build sounds by using gross motor exercises and his AAC device, andhe is working on signing. My son’s condition is very complicated, and it’s not uncommon to find individuals like him who never find words. My son is beginning to verbally respond to questions. He’s still far from producing words, but this small step tells me it’s possible for him.
Integrating the therapies.
For us intervention starts at 8 am and ends at 9:30 pm. When he’s not with someone from his therapeutic team, we use the things he really loves to help us with his goals. We watch Sesame Street during potty training or during feeding exercises. It’s used as a reward—for every two bites with a fork he gets one minute of Sesame Street. When he’s all done, he gets to enjoy some extra time watching to take the pressure off having to continually eat. We use his swing or his drum sets as tools when we need a break, but they also serve to provide cross midline exercises and proprioceptive work. We read constantly,and I find sensory-based books are the best for him. At home we read in front of a mirror, pointing to pictures, pointing to ourselves and each other. We are still working on isolating his finger, but we are getting close. Dad is in charge of bath time, and during that it’s all about singing songs with hand motions. My son is highly responsive to water, and Dad is super fun. On Saturdays you can find us at Champs Heart riding horses, and you might hear my terrible singing while we practice our hand gestures. Or you might see us at the zoo, where we’ll talk about the animals and maybe repeat the lines from some of our favorite books. We also do a ton of cooking together.
I didn’t just come up with all of this on my own, but I used the goals from all the specialists, including his teachers at school,and added them to this board, which sits in kitchen.
While not beautiful, it is useful because it keeps everyone who comes into our home on the same page. It also reminds everyone of our specific goals, provides updates on themes, and gives inspiration for activities. It looks exhausting, but this is every week for us, regardless if it’s on a board or not, and honestly,trying to keep up with all goals living just in my head was more exhausting.
When our respite provider comes it’s like Christmas. My husband and I stay home locked in our room watching movies with lots of explosions and possible cursing; we order food and nap. We don’t do chores or organize anything. I do yoga or give myself facials; my husband reads fanfic. We sometimes talk about our kids, but mostly we just check out for three or four hours. When we need a break from an exceptionally exhausting week, we give each other respite. He takes the morning; I take the afternoon, and again we nap and check out. This break makes it so I can do all the things we need to do. I love the UCLA free mindfulness app—the loving kindness meditation is my favorite, and it helps me maintain order through my day to day.
I would love to say I don’t do laundry. However, my son drools way too much and gets food on everyone, so I changed how I do it; I do it every day and fold every other day while again watching movies with explosions and cursing. I would like to say I skip doing dishes at night, but again I don’t have that luxury because we start therapy at 8 am and this place needs to be ready for a therapist to come in, plus I have to be ready to leave my home once they are out. So at night I watch my shows and clean. I would like to say I nap during therapy, but while being in my car while he’s in therapy because of Covid, my two-year-old and I normally take walks because he needs mom time too. Lately my two year old been wanting to take naps again, so on those days I’ve been writing this. My living room is a command center, and it looks like a pediatric therapist’s office. I even had a dirty box for all the books and toys used during therapy. I would like to say that my whole house is clean, but that’s not true either. It’s clean enough to satisfy my mental health. I discovered when I let everything else go, it actually made me more depressed and overwhelmed . In my son’s room he’s got multiple therapy swings that we switch out. When I’m cooking I let him play on his therapy swing while watching Sesame Street. I would like to say we order out all the time, but my son has a strict diet, so there are consequences to not having a home-cooked meal. But while getting organized seemed impossible, I discovered that my organization doesn’t have to look like Pinterest—it simply needs to work for me, and whatever can save me five to fifteen minutes every day ends up actually worth the hour or two it took to get there. There’s zero mom shaming, and honestly it took me a long time to get here. The key is balancing your personal needs with the needs of your family, when it comes to creating the Theraputic space in your home. There’s no right or wrong way to do this, it’s all about what you find empowering. It also took me a long time to realize that I had everything in me that I needed to do this, and the trick was changing the environment to fit my goal of empowering my son and my family. In that process of changing my environment, I also changed my mindset and I can happily say that while my life is extremely busy, it’s happy, it’s less stressful, and there’s a flow. This of course is what works for me; for you it might be doing laundry once a week or a million different ways of doing things. However, the most important thing I would say about how a physical space impacts you is that you have to make a command center where therapy can easily happen in your own home. I’ve talk to a lot of therapists who have told me it makes all the difference.
It’s weird saying I’m a stay-at-home mom because honestly, I work harder now than when I was an event planner. Filling out forms feels a lot like grant writing, and managing all the therapists feels a ton like volunteer management. I truly believe our children choose us. Some argue that things aren’t destined to happened but rather it’s what you do with those things that define your life. However, for me, I truly feel I’ve been preparing to be my son’s mother my whole life. I couldn’t see it at first, but the more we go through this journey, the more it becomes clear to me. I hope this helps, I hope it inspires or empowers your own voice. I hope you realize that the second you decided to step into this journey you joined a die-hard group of mothers who will fight with you and embrace you as you are.And if you ever feel like you need a friend, I’m here and happy to listen.