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Plans for regressions, when to review/monitor progress, longer-term plans of treatment, anticipation and preparation for future challenges.
(Emotional Regulation, rapport, and self-esteem/identity; finding what is meaningful and purposeful)
Engaging in parent support groups, sibling support groups. Finding a higher purpose to all of this madness. Advocating for change in how the public views and accommodates this disability will ultimately lead to an increased sense of fulfillment, decreased anxiety about the future, as well as greatly expand their support network. (For me) These groups are extremely easy to run because they are more about emotional support and less about education and skill-
Here’s where we learn what the educational institutions can and will do for our child (they are with the child 6-8 hours per day!) We will learn how to navigate an IEP and all about all of the other fancy acronyms and eligibility laws and job descriptions within the school districts. There is much to learn here and much to evaluate if an IEP and/or a psychological assessment by the district is unsatisfactory. In order to obtain a second opinion, IEE (Independent Educational Evaluation), the diagnostician must be pre-approved by the district.
Concern: should I get approved? Or even better, team up with a fabulous neuropsychologist or doctor of educational assessment? I need a pocket full of special education advocacy specialists – I know they are out there but I do not have connections with them, as well as disability lawyers and other individuals who are well-versed in this area and have muscle! This step can either be very simple if the previous evaluator is good and the school’s IEP is strong, or it could be the most difficult step if the school is resistant because of budget, laziness, lack of resources and we get involved with a change of placement and/or have to push hard to get more needs met.
First we begin with the nuclear family, then expand to practice within our extended family. Here we address the delicate topics unique to every family and handle disagreements within the marriage, within the family; sibling issues, balancing self-care, including the patient/child in decisions. Putting this step into action means practicing in the home, at family parties, playing with everyone’s comfort level. The more we can practice advocating within the family, the more comfortable we will feel advocating for our needs and the needs of our child in the community. It also opens communication channels within the family and brings what is ‘unsaid’ and the most delicate topics onto the table for discussion in a safe, therapeutic environment. Even if disagreements are not completely resolved (what family disputes ever fully are?) after this step those family members that choose to be a part of our ‘team’ can come from a unified place, thus strengthening the core of the child’s team.
“it takes a village to raise a child”
This is where we would match-up appropriate physicians, psychiatrists, speech therapists, OT, ABA, animal therapies, lawyers, tutors, etc. – whatever treatment providers would be appropriate for the family based on the Needs Assessment. I would like to pre-approve and work closely with these providers. It will take time to not only find individuals I like, but individuals I approve of and have a team vision as well. Concern: To save time, how can I get these professionals to seek me out?
This step also involves an educational component where the parent/patient learns the ins and outs of what professionals do what. What types of interventions (empirically-supported by research) are available, what are all of these acronyms? What are all of these job titles and name-droppings all about? E.g. what does an Occupational Therapy (OT) session look like?
Take some steps to get some immediate relief, even if it only temporarily buys us time to get to steps that establish more foundational, long-term support. This could include creating a sensory diet for a patient, establishing a behavioral plan in the home, creating the visual guides to be used in the home. ABA therapy can get involved at this point and a home visit is a strong suggestion. Occupational therapy equipment would be purchased and demonstrated to be used in the home at this time.
Diagnostics, 2nd opinions, rule-out diagnoses, in-office, in-home, in-school observations
Concern: Being poked and prodded has to come early in order to determine best course of treatment, but not before trust is established to reduce risk of premature termination. This process will be tedious and not immediately rewarding or helpful to the patient. Did you know that in order to get reimbursed by insurance panels, a diagnosis of a SMS (Serious Mental Health) condition must be made in the first 60 minutes. At times I feel an accurate diagnoses cannot be reached until after several weeks/hours and I personally dislike diagnostic ‘labels’ unless they provide comfort to the patient.
The renowned Duke Method brings practical application of proven techniques in Spectrum Disorders. Dr. Duke focuses on the latest therapy methods coupled with her own techniques. Learn about the Duke Method here.