Challenges with Autism

February 2024

Well a lot has happened since the last post. Christmas was fun but we had many changes to the schedules and routines that caused more meltdowns and aggression.  We had our main support worker out on vacation, but as soon as they came back Samson accepted them back in with no issues. It is really good to have consistency for people with autism.   We got a new ABA Technician and unfortunately they did not work out and actually increased Samson's aggression. Our BCBA found another person but then they flaked out and so we are now without a technician again. Darren had his trial date and the deputy did not show up so the case was dismissed. According to someone that was an officer if the officer is still in training they have to show up unless they are on a call and cannot get away. We know that at the time that the officer gave the citation she was only deputized 3 months prior and thus would have still been in the first year of training. They also recommended we petition the county because the deputy didn't show up and possibly get the money back for the lawyer, but Staci and I are just glad to have that case dismissed. It is one less thing on our plate. Daniel has now been diagnosed with autism as well although he does not face the same level of difficulties as Samson faces. This will not change much in our lives other than more paperwork to take some of the financial burden off of us. Darren caught the cold that the boys had and all of them are still getting over it. Another thing that is positive is we got a projector that we are using for regulation in the sensory room. This is helping the boys to relax and listen better. We do have some rules in place to make sure that the boys do not just have full control of it and so far it is going well. 

November 2023

Samson has continued to struggle to eat and the doctors have him on a appetite stimulate. We are noticing that he seems to get tired and that is some concern. Samson also has gotten sick this month and has been constantly rubbing his face / nose. He does this so compulsively that his face turns bright red and looks like he has a staff infection. Luckily we are starting to see some improvement in accepting the Vaseline over what we call the mustache, a strip of gauze taped to his upper lip, but wiping is still a problem.  Daniel was moved into Samson's room to make way for a sensory room. This seems to be what both boys needed as they are in there a lot and love to be sleeping in the same room together. We are still working on putting the room fully together but this is a step in the right direction with their needs. Darren also went to the doctor to see what was causing him pain in his foot for over a year and a half and after a X-ray and two MRI's it still showed signs of a sprain. He was put in a boot and has made it difficult to assist with the needs of the boys. Staci has done an amazing job managing all this but is getting worn out. Darren was going to address the citation he got back in August but that got moved to a later date so we will see if that sticks or not. We also were invited to a birthday party for one of Darren's coworkers' daughter and the boys had a great time at the carousel with the rest of the kids. There were some little challenges with the toys not being Samson's and the boys running all around but over all things went smoothly. The boys are eager for Christmas and loved seeing the tree go up.

October 2023

Staci and I had a wonderful time on our 3-Day cruise on  the Royal Princess. We met some new friends out of Washington and enjoyed played games with with them. After getting back our ABA Technician  requested to be reassigned and this left us navigating the transitions with Samson. It may not seem like a lot but for someone that needs schedules and consistency this has caused a lot of stress for him and everyone else. It really takes a large team of people to assist with all his needs. Samson has been much more agitated and expecting his way all the time. Food intake has also gone down as the routine of eating is not enforced as much. We are working though all these challenges and are thankful that we did get some time away but it has been harder since we got back from our cruise.  We are hopeful the ABA company will find someone else soon and that we can get back to normal. Our other son Daniel is now on the waiting list to be evaluated as his challenges continue to grow as well. It definitely looks different than Samson  but Daniel is starting to have issues with eating now as well. We are going to be starting feeding therapy with him as soon as they can get them in. 

September 2023

We have been doing ABA therapy for a few months and the BCBA that we had remotely in California recommended we have a person that could come out to the house and observer our Son and the technician. We are starting that transition period to the new BCBA and it seems like she will be a good fit for our family.  Although this is going well the constant changes that are always happening with services for Autistic individuals can be hard on them. He has also been having a hard time regulating his emotions and being able to stay focused. This continues to create stress on the whole family but we were able to have a respite day that allowed the rest of the family to get away and  have what most would call a normal day.  We are counting down the days till the parents get to go on a cruise with no kids as stress is just really high. On a positive note we now have an attorney to remove the citation that was not warranted. The attorney feels we have a good case. Insurance has completed their investigation and has denied the insurance claim however the other party has obtained an attorney as well so we expect a potential lawsuit. This just adds to the stress that our whole family is under and causes more challenges for people with autism as they often are very susceptible to instability in their environment.  

August 2023 Update

We are continuing to flush our sons system and it is not always easy. Our son struggles to have wet and sticky things on his skin and this is seaming to cause him a lot of anxiety when he has an accident. We have to act swiftly and address both the accident with the poop that is more like liquid chocolate while the overwhelming sensation bothers him extremely. This is also causing more issues with Stimming and him mentally checking out more. On a positive note he is starting to understand the pooping sensation that leads up to pooping which is seeming to help him potty train. Thank God. Our stress at home has recently increased due to all this and Darren witnessed a car accident and was sort of brought into it with a ticket after repairing his car that day. Children with Autism typically have bigger mood swings when things are not as they should be and this has been the case for him as well. Please note that Darren was not involved in any collision and we are addressing everything with both the County and our insurance company. 

August 2023

As you may know our son struggles to eat on a regular basis, this can cause other issues and challenges from medical and emotional/ behavioral challenges. Today we are addressing an issue that a lot of parents face. The issue of pooping. Some children have no issues with this but others seem to not understand the need to poop or how to do it. This has not been the case for us but recently he has started to potty train and that has been going amazing. Unfortunately it seems that he has either forgotten how to poop or there is another issue here as he has not pooped in over 11 days. The Doctors are requesting to flush his system and have given a regiment at home that would be a lot for even an adult. We are following the process but are worried that this will affect his willingness to go potty on his own as this is not comfortable for anyone. The other option we had was to go to the hospital and have them do it there. Please note that hospitals put more stress on everyone and thus create more behavioral challenges for us. We are hopeful that we can get him eating more and fully potty trained at this time but it is hard to know how he will respond to this system flushing.