Lessons Learned - Tips For Parents

 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!

Third-Hand Report

My husband met with our Cognitive Behavioral Psychologist yesterday to get an update on our son. The doctor is leaving for vacation and we wanted to get a report before Thanksgiving. I am in my busy season at work so hubs went alone.

Although Colin has had another round of observations at his new school and at his new home, the report from this week is not yet filed. We are encouraged by last week's report. The observer is a CBT intern that is finishing up her PhD. She is young, petite and seems to have a good rapport with Colin. He seems to have opened up more than we had expected.

During the home visit, Colin gave The Observer a tour of his new home and was able to point out sounds that bother him. It seems that the trigger noises at home are minimal and Colin can cope by either avoidance or in the knowledge that they are only temporary and will be over in a moment.

He also appears to be coping well at school so far. Colin mentioned vending machine noises as an annoyance. When there are noises that bother him in the class, he asks for a hall pass and escapes to the bathroom. We are not sure how often that happens.

The biggest issue so far seems to be our son displaying "rigid thinking". This was observed in Geometry when the teacher was trying to help Colin solve a problem. He was resistant to the teacher's method and initially wanted to stick to his way. This is a minor blip and not a big deal at this point.

Where the "rigid thinking" appears to be problematic is pertaining to Mom and Dad. He holds us responsible for putting him in the hospital. Colin does not acknowledge any personal blame.

He seems relatively happy and well-adjusted with his new life. Reconciliation is not in the cards for now. My husband and I will stay home for Thanksgiving to avoid upsetting Colin. This is a small price to pay for stability. We have much to be thankful for.

We are a work-in-progress!

Gaming the System

Saturday afternoon, our 15 year old middle son had an idea. If we could upgrade to an X-Box Gold Membership at $60 a year, he could play video games such as Halo remotely with Colin. How could we refuse?

Our boys made arrangements after Colin was assured that Mom & Dad were not involved. The boys could communicate via headsets as they played. My middle-son started to ask his brother about school but was shut-down as Colin was afraid that his parents were behind that question. His brother was genuinely concerned. We had nothing to do with their conversation. The rest of their time was spent strictly on the game.

After an hour, it was time for Saturday Night Live and the boys agreed to play again the next day.

Sunday afternoon, the brothers met again online for another hour of gaming. All seemed to be going well until Colin abruptly seemed to be agitated. He broke off the game and said he didn't want to talk to his brother.

Middle-son called the house to speak with Aunt P. She went to check on Colin and he had retreated to his bathroom. This can be the prelude to a rage. Although he has yet to have a full-on rage at his new home, Aunt P was warned to give Colin his space when he retreats to his bathroom. She thanked her nephew for the warning and that was the last we have heard.

I am still following the adage, "No news is good news" and will continue to stay in the background, out of the way.

We are a work-in-progress!

No News Is Good News?

I have not heard anything about Colin since Tuesday morning. The last I heard is that Colin was to drop French and be put into a STEM (science ) class. He now should be able to sleep later and not have to take the early bus to the High School. This should help lower everyone's stress levels.

One of the hardest aspects of this "Sound Sensitivity" disorder, is all of the uncertainty. What will set Colin off? What is going on in his head? Will he learn to cope? How can he be helped? Will we be able to reconcile? Why, Why, WHY?!!!  It is important to take things day by day.

It is also very stressful having to answer the same questions over and over. Everyone wants to weigh-in and help. Sometimes it can feel like we are being judged as parents and constantly "second guessed". Now my sister has this added stress to her life. It is hard for us to have a conversation without getting into heated discussions. We have reversed roles. She is now the parent of our child and we sit helplessly by the sidelines wanting to help. This is not something she signed up for but has stepped up to the plate as our options were pretty grim. For this we will be eternally grateful.

For the time being, I am backing away and letting my sister contact me with any updates or issues. I will maintain "radio silence" and learn to let go. This is my busy season at work which is helping keep my mind otherwise occupied. It does not do anyone any favors by continuing to worry.

We have less than 2 weeks until Thanksgiving. We have no idea what will happen by then. I will just be thankful for today and assume that "No news is good news".

We are a work-in-progress.

This is Hard

This has been a hard and stressful journey for all of us; one of the most scary rides of our lives. There are no playbooks, no hard and fast rules and unfortunately no turning back. If someone told me six months ago about what my life would be like now, I'd laugh and think they were insane. The challenges we face are no laughing matter.

We've had to put my sister and her family in a very stressful position that they did not sign up for. I hate that we have had to dump our child on someone else. It is so hard to watch helplessly from a distance as my child struggles. I want to help but the best I can do is back away. I will need to learn to control my stress and let others take over.

There are so many things we would do differently given the chance.

Au Revoir to French Class

Yesterday was the day the guidance counselor was to tell Colin he needed to drop French. He got a "D" on his test Friday. The class is for High School credit and will go on his permanent record if he continues. We all thought Colin would listen to the counselor and be o.k. with switching to a STEM class. He was not and thought he could turn things around. He challenged the scores and wanted to speak with his aunt.

While my sister was not expecting this to happen, she made a strong case why Colin could not continue.This was not the same class that he was getting an "A" in at his old school. He was offered help in the form of tutors and extra work and refused the help. Colin blew the chances he was given and needed to face the consequences.

He finally said o.k. and seemed to reluctantly accept his fate. His aunt then took him to Wendy's and his mood brightened. Chicken tenders and a Frosty are a go-to treat for our family when on the run.

Aunt P was also able to talk to Colin about expectations in the future. She explained her role and set some boundaries. I am proud of how she handled things and hope that she finally feels more at ease and in control.

Word from the Observer

So far it seems like Colin is transitioning well in school (other than in French). He is engaged in the classes that were observed and seems to be interacting with other students as well as the teachers. Colin also seems to be thriving in his new home.

He is still very angry at his parents and is not interested in returning home or seeing us. In Colin's eyes we are to blame for his hospitalization and this is an unforgivable offense.

Thanksgiving Plans

As the wounds are still raw, unless there are any changes in attitude, my husband and I will stay home for Thanksgiving. We need to pick and chooses our battles and this is not an important one to push. We don't want to rock the boat.

My brother has offered to help shuttle our two older boys and I think we will take him up on the offer. I would still like my son to stay connected with his siblings.

I'm not sure what the future holds but am mindful of our Behavioral Psychologist's advice to not look too far ahead. 


We are a work-in-progress!

Breakfast with My Sister

I took my 15 year old out for a visit with his brother this morning. We picked up a dozen donuts at Tim Horton's on the way. The plan was to drop off my middle-son and to pick up my sister and take her out to breakfast.

Aunt P & I went to a local eatery and enjoyed a breakfast of Eggs Benedict as we caught up. I wanted to make sure my sister knew that we were grateful for her help. I also wanted to make sure we were on the same page about Colin.

While I want to help in any way we can, I don't want to interfere with her parenting. I made it clear that she needs to make the decisions for Colin and only needs to give me the important details. I suggested that if there are issues that she does not want my opinion on, she can choose not to tell me. We have different priorities and parenting styles and I want to avoid arguing with her. I also suggested that we start communicating more by email to avoid unproductive and lengthy conversations. She agreed with me.

On the way back home, we stopped at the grocery store so that she could pick up bread, cheese, lunch meats and other items for Colin. This gave me a chance to pay for them. I went with the flow and let Aunt P pick out brands we don't normally buy at home. My sister thought it was best not to purchase the same things he was used to at home as these would be reminders of his old life which she would not normally buy.

Crossed Wires

My sister phoned home after we left the grocery store to alert the boys we were coming back. She asked my middle-son if he was ready to go home. They were in the middle of a video game and he wanted to stay a bit longer. She then told him to ask Colin if it would be o.k. if I came inside to wait. The idea was for me to hang out with my sister in another part of the house until my 15 year old was ready to leave. Colin said yes.

When we reached the house, my nephew came rushing to the door. Apparently they tried to call back. Colin had not understood the question and did not want me to set foot into the house. He stormed off and went into hiding. I called out to my 15 year old and told him we needed to leave. NOW!
As we were ready to drive off, Colin was found hiding in the master bathroom. I had sent his brother back in to say goodbye but it was too late; he was now labeled "persona non grata".

There was also an angry exchange that took place between Aunt P and Colin. He was mad that I was out to visit and got my "foot in the door". He saw the groceries and protested that he would not use the lunch items as he knew I bought them. Aunt P fired back that she originally wanted him to buy his lunches at school, that she picked out the groceries and defended her position where I was concerned. She ended up retreating to another part of the house to cool down. I hope my son realizes that he has pushed his aunt to her limits and is smart enough to back down.

While I am grateful that the boys had two hours together, we now realize that we have some unresolved issues for Thanksgiving. We are not sure what will happen but it looks like it is too soon for my husband and I to be under the same roof as Colin. We have two weeks to work it out.....


We are a work-in-progress!

Control

So far the last few days have been Rage-Free. My sister thought about posting a daily sign counting the Triggered-Attack Free Days like they do for accidents in factories. There have been only a few noticeable signs of noise-issues and they were met with minor reactions such as avoidance (leaving the room), asking to turn off the offending item (wipers or car  heater) or to please hurry (driving in the rain).

Control

It was mentioned that Colin seems to have control over his triggers and that he might be using his rage to manipulate. While I agree that some of his reactions were due to anger at his parents, control is not easy. The new environment and the fact that Colin is not yet comfortable in showing his rage may account for some of the lack of attacks. He also is in a home that is much less full of the triggers that he faced in our home. I had to point out that we all have some "Control" over our actions.  I drew the analogy that my sister has control over her stress and anger and this is a choice. Not so easy is it? Control over emotions is hard.

One of the challenges my sister and her family face is to set reasonable boundaries as to how much control Colin is allowed to have. It is important that our son not run their house (this is the trap we fell into). There was a battle over wearing the same clothes (that he slept in) a third day in a row even though they were a bit dirty. (he wore them Sunday, Monday & Tuesday) Colin won that battle with some help from his Uncle. Another issue was Colin calling from school to inform Aunt P that he was staying after school for a Science club and that he needed to be picked up at 4:15. This was done in our house as we live less than a mile from school.Colin could walk home if he couldn't get a ride. His Aunt made it clear that he is to ask in advance next time and that she is not his chauffeur to boss around as she is not always free to do this.

There is also an issue of clear communications. Colin will answer most questions with " I am fine " even when this does not make sense, such as "Do you want Pot Roast for dinner?" They are pressing him to answer with a "yes" or a "no" and are finding out that "I am fine " usually means "No". Another common response from Colin is "OK. Thank You" which is believed to be the equivalent of "screw you"- quote from Aunt P:

 Me : "Colin it is 6:55 and you are not dressed you are going to miss the bus!" -- Colin "Oh I can get dressed fast. "  Me : "Ok well do it"-- Colin " Ok Thank you"

While Colin comes across as being polite, there is an underlying defiance that is being detected.

Trip to the Department Store

Shopping on Tuesday night was frustrating. My sister took Colin and her son to Kohl's. I can't help but wonder if my mother was looking down from the Heavens and smiling. This had to be some kind of Karmic payback from childhood when my sister was a nightmare to shop with. When Aunt P tried to help him in the dressing room, Colin used a defiant and irritated tone to ask "Is this my decision or yours?" When his cousin went to check  a little later, Colin was overheard muttering in the dressing room, "Stop asking me" with tears in his eyes. His poor cousin had to ask his mom if Colin was Schizophrenic.

Call from the Guidance Counselor

My sister called me yesterday to tell me about a call from Colin's new guidance counselor. She was reviewing the Ohio Achievement Test he took last year for 7th grade (8th grade math). She noticed on Math, he scored in the 94th percentile which is quite good. Upon further inspection, it appeared that he had left a section of simple multiplication problems unanswered. The rest of the test he scored 100%. The burning question is why he skipped the easiest section of the exam? Was this out of defiance or A.D.D.? Was he upset that he did not have a calculator or felt these questions were insulting to his intelligence? Was this an honest mistake due to an oversight or not enough time?

Today is the day that Colin will need to drop French. He may be allowed to take the test today which the teacher is sure he will fail. It is clear that while some classes at his old school put him ahead, French is not one of those. Colin had a solid "A" in his old class but in this new High School French Class, he appears to be hopelessly behind. The school wants to replace French with a STEM class.
I am hoping that issue is handled well by my son.

Gratitude

One of the hardest things for me to do is to let go of my son. We are no longer in control here. I hate that I have to burden my sister this way. Aunt P is realizing that she will have to learn to have Patience in spades. This is not her strong suite and realizes

"Maybe I have been given this burden as a way to expand my chronic lack of patience." 

I may not always sound grateful for this huge task we have dumped on my sister and her family but I will be forever in their debt. I also pray I will never have to return the favor. This has been a gut-wrenching journey for all.

We are a work-in-progress!