Living With Labels Part 3: You Have the Diagnosis, Now What?
In Part 1 of IOH’s “Living with Labels” series, we faced our fears of stigma head-on and shared how faith is our most powerful ally.
In Part 2, we walked you through the steps involved in obtaining an evaluation and included a little-known tip for helping families in need secure an evaluation for a reduced fee.
Today, in the final post of our three-part “Living With Labels” series, we provide practical tips to help you in the days to come post-evaluation.
Taking It All In
Receiving a diagnosis (or even the absence of one) can help point you in the right direction for how best to proceed. Evaluations can help provide insight into your individual child’s needs and guide the next steps of care.
For many families, mine included, having a set diagnosis brings all sorts of mixed feelings. From the relief that comes with the validation of trusting one’s instincts to the worry of what comes next going forward, emotions can certainly run a range.
As a professional counselor, I am all about utilizing support systems. In Part 2 of our “Living With Labels” series, I recommended taking a few moments of uninterrupted quiet time to read the examiner’s report in full and perhaps re-reading it a second time at a later date in order to fully process the information. I suggested having your spouse or a trusted friend or family member nearby to bounce questions or ideas off of and as a source of comfort.
As you take in all of the information, remember the words on the page are not the sum total of your child, merely one part of the whole (and a very small part at that). As my friend, fellow mom, and DCD advocate Sue Hille recently said to me, “Chin up, square your shoulders. You can do this.”
Educate Yourself
In our next blog post series, “Advocacy and The Role of the Parent,” I will expand on the important role we parents play as advocates. For now, I will give you a little preview of what to expect in this upcoming series.
In order to successfully fulfill the role of advocate, one must first have knowledge. Knowledge is power empowers. Learn all that you can about your child’s diagnosis (and about any diagnoses that may co-occur). Gather as much data as possible to help you navigate this new world of learning differences. Let the information help take the mystery out of the label.
Insight can help you dispel any fears you may have regarding the days to come. As parents, concerns about our kids are commonplace whether your child has a learning disability or not. Yet, I humbly submit to you that you use the newfound knowledge you glean to help you grow in wisdom. Wisdom can help you discern how big you are willing to allow your fear to grow. Let your wisdom help you talk back to the biggest fear of all, the fear of the unknown.
Make a Plan
Remember my self-professed love/hate relationship with labels? Well, here is the part where labels (or the absence of them) can actually be beneficial.
Ruling a diagnosis out (or in) can help guide steps for intervention. Once you have your questions answered from the final report, you can decide how best to move forward.
At the end of your report, you should be provided with a list of recommendations. Suggestions that can help guide your decision-making.
Do you want to begin some form of therapy for your child (occupational, physical, speech, or a combination of any of these)?
If the answer is yes, then you should speak with the evaluating clinician about which type of service to begin with. In cases where multiple therapy modalities are recommended, try not to feel overwhelmed. Simply begin at the beginning.
Ask the examiner for suggestions as to which intervention to start with first. Different modalities often complement one another, working together to help children accomplish the same long-term goals by simply starting in different areas.
Being A Collaborator: Working with a Treatment Team
Part of being your child’s best advocate means being an ally with the treatment team. After all, you are all on the same team anyway, your child’s team!
Keep the lines of communication open. In Part 2, I talked about the importance of signing releases. Releases are important as they allow different team members to openly communicate with one another from your specialists to your therapy crew to your pediatrician to your dentist. (Yes, I have a release on file for my son’s dentist.) Having a dentist who is knowledgeable about how best to work with a child with sensory processing issues has made our biannual trips far less stressful. I also have a release on file for my son’s ophthalmologist as her results helped guide our OT’s interventions.
Professionals aside, the most important line of communication I am referring to is the one where you, the parent, are a participant. Just as I discussed in Part 2 with the evaluation process, open communication during therapy is crucial. When visiting your therapy office, your clinician will typically ask how things have been since your previous visit. This is more than friendly banter. While I am sure your therapist is lovely and cares a great deal about how your week went, this quick conversation also helps them gather data. Data that can help guide the day’s therapy activities, adjust treatment goals as needed, and help formulate possible homework ideas.
Keep a log of any questions or concerns you may have in between appointments. Depending on your therapist’s preference, you may be able to send concerns his or her way as they arise. I do this with our therapy crew, texting updates throughout the week (during business hours only, mind you). I also asked permission in advance prior to doing so. Communication is important, but so are boundaries. I adore our therapy crew and have become very close with them over the years, but I also understand they have lives and families outside of the therapy office. I value and respect their time.
Prioritize goals. Receiving a report with recommendations can overwhelm; it can also inspire. Ally hats on, there can be a tendency to want to tackle “all the things” at once. After months or perhaps years of being able to put a name to your child’s struggles, it is understandable that you are now ready to move forward with intervention. That’s wonderful!
But slow your roll. I have learned (ok, I am still learning) that multitasking is really nothing more than an inefficient means of merely partially completing several tasks simultaneously. The same applies to intervention efforts. It is better to eat this elephant one bite at a time. Work with your treatment team to help you decide if it is best to start with the trunk or the tail. 🐘😉
Ask your therapy provider for homework (and be sure to do the homework). One therapy session a week is not sufficient for any child to make progress. (I don’t care how amazing the therapist is.) Ask your therapy provider for a list of exercises you can perform at home during the week for the time between sessions. Putting in the work at home will help you facilitate progress and reach your treatment plan goals.
Accommodations and modifications. The beauty of being homeschoolers is we have the freedom to accommodate learning and modify curriculum as we see fit. We understand the why as far as adjustments are needed. Yet, we may need a little help with the how. I am thankful our therapy crew is there to show us the way. You do not have to know “all the things.” In fact, you can’t. It’s impossible. The good news is you don’t have to. Your child’s treatment team is there for you as an invaluable resource. There is great comfort in surrounding yourself with people who know more than you do.
Financial Considerations
Therapy services can be quite costly. Below are some options to help ease the financial burden:
Utilizing insurance. Just as with testing, insurance coverage for therapy services varies greatly. When our son was diagnosed at age 3, our insurance company at the time would not cover any diagnoses that fell under the category of “developmental delay.” I fought tooth and nail for services to be covered but I did not succeed. Instead, our family made sacrifices in other areas to cover the cost until we were able to switch plans.
Read through your policy with a fine-toothed comb to be sure which services are covered. I must apologize in advance to those in the profession of technical writing for insurance companies. Or perhaps I should thank you. On more than one occasion I have found myself temporarily cured of insomnia from attempting to decipher my own healthcare coverage policy.
If need be, turn your insurance card over on the back and call the Member Line. While going through the seemingly endless directory menu of contacts and departments is annoying, do not be deterred. After all, this company works for you. Enlist their aid to help you understand your benefits better.
Ask your therapy provider for options. In many cases, therapy providers will offer a reduced rate for services. Particularly for cases when they may be out-of-network or for clients who want to avoid dealing with insurance altogether.
Please note if you decide to pursue this route, you may be asked to sign a waiver indicating you do not plan to use insurance services. Do not be alarmed. When clinicians contract with insurance companies to become listed as in-network service providers, they agree to certain terms. These terms protect both the client and the clinician. The waiver is merely a written record of your decision as the client to waive your right to use your insurance.
Rotate sessions. In the early days when it simply was not financially feasible for my family to cover the costs of both weekly physical and occupational therapy services, we would often rotate weeks between the two providers.
Alternate interventions. If biweekly care is not in the budget, consider monthly. Oftentimes goals build upon and complement one another. Work closely with your treatment team to determine which agreed-upon goal takes precedence. Then ask your provider to break treatment goals down further into smaller more manageable goals that can be reasonably achieved with fewer or further spaced-out sessions from one provider.
For example, my son had some fine motor goals related to handwriting a few years back. In order to help him with these fine motor skills, he needed a bit more work developing his gross motor skills. So, we effectively “paused” our occupational therapy services in order to free up both time and money for physical therapy services. Once our PT goals were achieved, we resumed OT services.
Take a break. My family frequently takes summer “off” when it comes to therapy. With travel and camps during these summer months, it gives us time to either enjoy vacations and save up financially for the next round of intervention while also helping avoid burnout.
Universities, Teaching Hospitals, and Advocacy Groups. We discussed these options in Part 2 of our “Living with Labels” series. Please check out that blog post here. These resources are hidden gems for families seeking services who can also demonstrate a financial need.
Opening Up To Others
As parents, it is our natural instinct to protect our children from all forms of harm, physical, emotional, spiritual, and mental. This also includes judgment.
In Part 1 of this series, we talked about overcoming the fear of stigma. Acceptance is a universal human need. And when you are a parent, the desire for the world to love and accept your child as you do is paramount.
Yet, we live in a world where this need often goes unmet. So what do we do?
For our family, it all comes back to faith. The ability to rest in the knowledge that we are ALL fearfully and wonderfully made in God’s image. Understanding that our Creator makes no mistakes is invaluable. There is no greater comfort than the unconditional love of our Heavenly Father.
When the world does its best (and it will) to knock you down, you get on your knees so that you may learn how to stand. Stand in your faith. Stand in His love. Live by His grace.
Stepping out in faith takes courage. Courage, mind you, is not the absence of fear but rather pressing forward in action in spite of it. I forge ahead in fear with courage with every blog post I write, every podcast episode I record, and every YouTube video I film. The “imposter syndrome” is real and one of the greatest lies of the Enemy. For God does not call the equipped, He equips the called.
COMING UP
It is this spirit of walking in faith that led me to my next blog post series, “Advocacy and the Role of the Parent.” In this series, I will be switching up the playbook and moving from defense to offense. I want to empower you to become an advocate so that you, in turn, can teach your child how to self-advocate.
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Blessings,
Kimberly
IOH Mom
This website is not a professional counseling website and nothing here should be construed as professional counseling advice. Although Kimberly Bennett, LPC is a Licensed Professional Counselor, she is not your counselor, and no counselor-client relationship is established unless she has signed an agreement with you. All information provided through this website is for informational and educational purposes only.This post may contain affiliate links. Please read my disclosure statement. Thanks for visiting!
