In the Wetzel House
This is going to be a long and honest post about the "Good" and the "Bad" of what has been going on in the Wetzel household the past few months...
BUT before we get to that, I want to share something exciting. Last year, I was contacted by an author in Texas. She was writing a book about families with children with autism all over the world. She ended up using the story about when Mark attacked me in her book (I know...not the most glorious story but this is the kind of stuff that sells...). I have written about this before in the blog in May 2017. This past September, she traveled up to Idaho and we had a book launch party which included a Mom's Night Out for mom's of children with special needs. It was an amazing event. Over 100 mom's registered to come and every mom that attended got a goodie bag (with about $50 worth of free items), dinner, dessert and drinks, a comedy show and then a chance to win a larger prize at the end of the evening! The entire event was free!
and use this Code: AUTISM33
"The book, United in Autism: Finding Strength Inside the Spectrum, brings together thirty inspiring and heartfelt stories from parents raising children from all places on the spectrum and from all corners of the world. These mothers and fathers have experienced some of the worst of what this disorder can do, but in seeking help, they found it…and more. Now they pay it forward, by sharing their accounts and giving back to the autism community. United in Autism: Finding Strength Inside the Spectrum (Foreword written by Dr. Temple Grandin) offers families living with autism understanding, comfort and hope."
We felt honored to be included in the book! I have often thought about writing about our adventures with the kids. Of course, I would have someone else write it because that is not my strong suit. Who knows...maybe this blog will morph into a book some day. Okay, now that we have that shameless plug out of the way, I want to give you an update on what has been happening in the Wetzel house. I have to give a little bit of background...
In March, our youngest son, Joshua, spent 3 weeks at a psychiatric hospital. The treatment did not go well and they wanted to send him to the state hospital in Boise but we refused this. We brought him home and worked on counseling, Community Based Rehabilitation (CBR), and psychiatric medication management. The issue was actually similar to the situation with Mark that was written about in the book. Joshua was attacking us and the police were called several time and we ended up in the Emergency room a few times trying to get him to calm down. It was so upsetting to have to go through all this (again) but the salt-in-the-wound was when the social worker at the hospital told us that we just need to take some parenting classes...
I have been working with Crisis Prevention with the Department of Health and Welfare (DHW) since March to try and line up some services for Joshua and get help for me and Henry. It has been VERY slow.
Bad = The CBR was unsuccessful. Joshua just completely refused this help. He can be defiant and when he doesn't want to do something, he really digs his heels in.
Good = After being switched between 3 different counselors (one quit and one had health issues), we finally got a counselor that Joshua likes and will talk to. She mentioned to me this past week that he showed some empathy...this is HUGE!
Good = In July, we found some medication that seems to work well for Joshua (thank God! I was really getting tired of the "call 911, police arrive and we are escorted to the ER routine"...).
Good = The new medication worked so well with Joshua that we decided to try it on Mark (we started it in September with Mark). Mark has had sleep problems for the past couple of years (a lot of kids on the Spectrum have sleep issues). Some nights, he is so manic he will not sleep at all. For example, I remember this past August there were 3 nights within one week that he did NOT sleep at all. The new medicine is working for Mark and we have not had any sleepless nights since we started it (knock on wood...).
Good = In September, the Crisis Prevention with DHW was able to identify a Habilitative Interventionist (HI) to work with Joshua. He has worked with a lot of "difficult" kids. There was the traditional honeymoon period with the new HI and then some resistance from Joshua but that seems to have smoothed out and it is going better.
In August, we started meeting with a Behaviorist to work on a Functional Behavior Assessment (FBA). Just this past Friday (11/16/19), it was completed. The FBA suggested that Joshua has difficulty with his Executive Functioning and Social Skills. This is not new information. A lot of kids on the Spectrum have these issues. The big question for me is: How do we help him develop these skills?!?
Bad = the Behaviorist that could have helped us with setting up some goals/methods to help us with Joshua is moving out of the area. I was given a book to read. So, now, in all my spare time, I have to read a book to learn how to work with Joshua. Fingers crossed...I do want this to work...I need to work on my attitude...
Speaking of spare time...this is another issue for me BUT I am working on it. In early September, I was given Mark's budget for his adult services and it hit me like a ton of bricks that I have not even started preparing for our home to be certified to be a Certified Family Home (CFH) to care for Mark when he turns 18 in January. I am the Executive Director for a small nonprofit and I have been trying to quit this job. We hired a ED in May so that I could train her to take over and she quit the end of June. So, we had to start over with finding a new ED. We identified someone in September and I started training her right away. I also work as a Support Broker to help people with developmental disabilities and their families to get services. I have over 50 clients. I have a hard time telling people "no". This has kind of gotten out of control. One of the supervisors in the program told me that 40 clients would be considered full time work and I am treating this as a part-time job.
I hope the irony of the situation is not lost on you...I help other people find services for their children and yet I had trouble finding help for my own son. Kind of like...
In October, I took Mark to the pediatrician for his annual physical. The doctor was concerned that his blood pressure was too high. He had us check Mark's blood pressure several times over the next 2 weeks (we would walk to the Rite Aid). Mark went to have an ultrasound of his kidneys. I was worried because Mark had to lay down and be still for an hour during the ultrasound but he did well!
The pediatrician still did not like the blood pressure readings that we had taken at Rite Aid. So, he gave us a referral to a cardiologist. They did an EKG at the cardiologist office and Mark's heart beat was fine (yeah! more good news). The cardiologist said that the blood pressure is borderline but that we did not have to start medication unless we really wanted to. Of course, he suggested a low sodium diet and weight loss. The cardiologist did not feel the Rite Aid readings were accurate so he advised that we buy a cuff (which we did) and use it in our home to monitor the blood pressure. We meet with cardiologist again on December 17th.
Of course, I feel awful because both of the boys weights are up (Joshua's is due to the sedating medication he is taking). Mark used to have a worker that would come each day and take him out for walks and jumping at the trampoline park. We had a great guy last spring and he said he wanted to work with Mark this fall but when I went to contact him, he did not respond. I have been so busy with work, Joshua, and getting things set up for the CFH, that I have not had time to try and find a new worker for Mark. As a result, he just comes home from school and sits on his bed watching YouTube videos.
Good = I have given over all duties of Families Together to the new ED. I only have one more small task to complete with that work (which should only take a couple hours) and I will be completely done with that. I have also been letting go of some of my Support Broker clients (if any of my clients are reading this, sorry, but I need to start putting my own family first).
As my time frees up, I have more time to concentrate on Mark. We are starting to monitor Mark's intake of food more and working to get him more active. The last 2 Fridays, I have taken him to the trampoline park and he has worked up a good sweat. Last night, we walked to church (it is about a 1 hour walk). We will work more on his diet and encourage him to eat new foods (I introduced him to Larabars and kombucha yesterday). I am taking his blood pressure and weight every other day.
Things have just been a big mess these past few months but I can see the light at the end of the tunnel. I feel that we are finally on a good path to getting the right support for Joshua and I have the time to dedicate to helping Mark eat more healthfully and get more exercise.
One more piece of REALLY good news to end on: Henry and I both "caught" Mark typing independently on his iPad!!! When I saw him, he wanted to watch a JumpStart video on YouTube and I heard him sounding out each letter and typing it in to the search bar! I couldn't believe it. We have worked for years at typing and he is finally starting to do this independently! This is so amazing (but probably not book material...LOL)!!!
I am just SO excited to get our farm together in 2019 and get Mark busy on the farm. I have been looking forward to this for years and, sometimes, I can't believe it is finally going to start happening!
We have MUCH to be thankful for. I am still just so grateful that we were able to purchase this little farm property! I am so thankful for our little garden this past summer! We feel so blessed to have friends and family that care about us. We will be counting our blessings this Thanksgiving and wish the best to your family during the upcoming holidays!
~Denise and boys
