Tips For Parents At The Beginning of Their Journey

 Post to Parent Support Group, Sunday Nov. 24

Tips for Parents that are at the Beginning of their journey:

We are now approaching the 6 month mark of our journey with Miso / 4-S and thought I'd share some suggestions.

1. Start with a trip to an Audiologist. We did this to rule out Hyperacusis/ Recruitment. Our son's hearing turned out fine but the audiologist referred us to a Cognitive Behavioral Psychologist as she suspected Misophonia. She was very concerned because he was 12 years old. At the onset of puberty, the combination of hormones and rapid brain development can help create the perfect storm. We were warned to get help immediately as triggers can migrate/ expand very quickly at this age. Sadly she was correct in her assessment.

2. Create a list / timeline of triggers and a list of goals / objectives for treatment. If you are dealing with rages, try to get a video of one. Also take a video tour of your home to give doctors a snapshot of the home environment. As our son's triggers were mostly mechanical, it was helpful to point out the problem areas in our house. When doing so, try to be brief and to the point. Also include any school/teacher reports that will shine a light on your child's behavior at school.

3. Avoid self-diagnosis of your child. As Misophonia / 4-S is not yet a medically recognized diagnosis, MD's can be put off. You don't have to accept every diagnosis that you are given and are free to get 2nd and 3rd opinions. Stick to the facts; this is what bothers my child and this is what happens.

4. Visit with a Cognitive Behavioral Psychologist. - This is the stage we got derailed as my son was adamant in not wanting to be analyzed by a Psychologist of Psychiatrist. We forced the visits and as a result our son started having trust issues. I now know that the child needs to have some sense of control. Honesty is the best policy. Trickery or lies will destroy your relationship. Treatment can not be forced.

When the Psychologist confirmed the audiologist's assessment, we were told that our son has Misophonia and there is no cure. The best he could do is teach coping skills.

This was not an option for us as our son refused to admit that there was anything wrong and would not speak with the doctor.

5. Home and School Observations - A trained observer would go incognito to observe your child at school. Home visits may also be in order.

If autism is suspected, there is a good chance that the school system will pay for this.

Due to our missteps, we did not do this at our home and my son's old school. However, once he started to live across town at my sister's house, we were able to do this. We have applied to make my sister our son's legal guardian. It made sense to our son when he was told he would have to be observed to make sure he was doing o.k. in his new environment. We are using a CBT Intern that is part of our Psychologist's team. The strategy is to let our son drive the process. After the observation period is over, our child will be asked about what he wants. The team will try to help him get there. (we are hoping that eventual reconciliation with his parents will be part of this).

6. Treatment - This is the tricky part. There is no proven treatment at this point. A psychologist will teach coping skills and not much else. We wanted to try Neurofeedback and found a provider through this referral site
(http://directory.eeginfo.com/), but you can not make someone do this.

7. Psychiatrists - with openings for new patients are hard to find. It takes months (or longer) to get in to see one unless your child is suicidal or will likely harm someone else. They are key if you need to have your child medicated. If your child will not take medication (such as a SSRI or GABA) then they are not a good use of resources. Same with hospitalization. Our experience was a complete waste of time and thousands of $$$$$.

8. Most importantly, make sure you have a support system. Groups like this as well as a team of family, friends and professionals are key.

Stay strong!