Most people would probably wonder why I do therapy at home. I too would ask and would question the motives and the ability of any parent who said that they were doing “home therapy” with their child on the autism spectrum. Not that I need to justify myself but I do feel that I am accountable to our society and to my husband and children, that is another reason that I am blogging. Our story is a bit different from others but it also shares a resemblance to those parents years ago and even in some areas now who are unable to get the resources needed to help their child.
We decided that we would not be solely reliant on others to help our son.
We were very thankful to find the pediatrician that we did when we moved here, our other pediatrician didn’t feel that there were any major concerns with Daniel that he wouldn’t grow out of. I did not have that same reassurance, when we moved here our primary goal was to find a doctor to help Daniel or to at least guide us in the right direction. The pediatrician we went to listened to us, I had documented all of Daniel’s issues, shared how we had researched autism and had my check list. She was very receptive, we were afraid that once again our concerns would not be listened to, but she had a nephew with Asperger’s and was very receptive and recognized right away some key issues. She sent us on our way with lists of different doctors and her office set up the appointments for us.
The first was to have Daniel’s hearing, sight and mouth/throat checked to see if there were any issues concerning them about him being non-verbal.
Of course he was fine in all areas so we went to the next step. I had to fill out what felt like a billion documents and I was very glad that I had already kept journals of Daniel’s issues because it made it a lot easier. We were sent to Occupational and Speech therapy right away and he got evaluated for his sensory issues and eating problems/being non-verbal. They set us up for 5 days a week with both of them. Then we hit our limit with insurance and had to go to twice a week, we were going for an hour each session than half hours for each session. Now Daniel was progressing so the fact that the time got less and less was not a huge issue but both the therapists made it clear that in order for this to work it had to be done at home as well.
I sat in on every session and asked questions and asked them to guide me in what to get for resources.
Whatever they told me to do at home, I did it and we saw progress. When our insurance ran out completely and we now owed over $5000 for something like 6 to 9 months of therapy, I can’t remember now and since I cannot find our medical papers still, I have to guess, it felt like a long time (What we owed actually isn’t as bad as some.) we had to evaluate what to do. The therapists had confidence in me to work with him at home until we could find another solution. What David and I did was looked long and hard at the whole situation. Where we live the only therapy options are about 30-45 minutes away, that is if we are lucky, some of them cost $30 a session which is a good price but still something that we cannot afford at this time. Daniel can qualify for free services and coverage but we have the added issues, as do all people with everyday home life, along with gas and driving time. During the months that I took Daniel it took about three to four hours out of our day. That took away from David’s work, from our home school schedule, the other kids could not get on a schedule, Daniel and I both having social anxiety, even though it was good it was all very stressful.
There is only one highway to our house, there is a train that goes through, it is a 20 minute train.
Now after that image, imagine what it is like for a child on the autism spectrum who has been in and out of the car for about two hours, trying to sit in a waiting room full of other children on the spectrum, going through all sorts of challenges with his sensory and social things for about an hour or longer and also being stuck in a car for 20 minutes, but not understanding why. Those days were not fun and needless to say nothing got accomplished when we got home. Between the drive, the gas money spent, the fact that David lost jobs because of having to watch the kids, we couldn’t afford childcare, the school district is frightening here, (let’s just say they have had a couple of teachers convicted of child abuse) and the stress that it all put on us, we decided to not pursue other interventions at that time and focus on me doing it at home. Side Note: I later discovered another route to the areas but it is still the same distance and for some reason I cannot understand how to use the other highway. I know that sounds silly but I have direction problems.
It seemed natural, I was homeschooling and researching therapies anyway.
I had learned a lot from the therapists and was given a ton of resources to start with from them. We did go to the school here and Daniel was accepted into the special needs program for free but their main focus was on tying shoes, using the potty and coloring with a crayon. They did not show us his classroom or introduce us to his teachers, the questions we asked were answered evasively and frankly David and I had a bad feeling from the second we walked in, this was before we knew of the abuse. Daniel was completely non-verbal at the time, we trusted our gut and didn’t pursue that route. We have tried to do other options and it just hasn’t worked out but that doesn’t mean that I should not be doing what I can to help him while we wait.
This whole thing was not easy, I had several break downs during this time.
I didn’t think I could help Daniel but I was already. I felt at any minute God was going to miraculously heal Daniel and I wouldn’t have to worry about it anymore. Finally after reading Tony Attwood’s book, The Complete Guide to Asperger’s Syndrome, things started to click. I began reading a lot more books about different therapies to help Daniel and I went down the path of researching homeopathic therapies but I couldn’t get past Jenny McCarthy being the loudest spokes person for them and I just felt for us that it was not a reliable source. I would ask David about these things, I would get desperate and say let’s just try it and his background in chemistry made him very skeptical, he would show me what certain chemicals were made of and lead me to resources from the science field that would help me to come to a conclusion. He would help me discern the hype around certain products and guide me to more reliable documents about these things. We do give multivitamins, fish oil, are on a gluten-free diet and try to restrain from eating processed foods as much as possible. We do believe in a healthy diet and since Daniel still eats a limited diet we feel that is it necessary since he doesn’t get enough nutrients from his food source.
There were only certain times that David flat-out said something like that is a bunch of bull and we are not using our kid as a test dummy for it.
I knew that it had to be pretty bad if he said that because he doesn’t normally. I stuck with the more reliable sources that have studies to back them up. I have mixed in Floor Time, my own take on ABA, Developmental, Occupational, Speech, Social Skills, music, art (in various forms) therapy and basically I do what comes natural to me and to Daniel. I looked into the Sonrise program and used some of their methods that they shared for free and I have used YouTube to watch conferences, get ideas about therapies and try to stay on top of the new things coming out. I read about them and then decide if it is worth pursuing. The way I see it school is pretty much all of this anyway so why does it have to be separated?
I try to include all of it into a natural flowing curriculum for all of the kids.
This is a full-time job and I thoroughly enjoy it. At this time in our lives it is working, Daniel has continued to progress in each area, he works very hard and tries to try new things. He is the one who has put in most of the work, I am just a guide and I cannot wait until he gets older and sees all that he has accomplished. I feel the same for Ariel and Joshua but this post is focused on Daniel mainly so I will stick to it. I am not an expert by any means but in the world that we live in and the added bonus of David’s access to medical books, sites and other resources I am able to work with Daniel at home. I never think I have the answers and I always know that I can do better or gain knowledge from an unexpected resource. If Daniel were not doing so well we would definitely do what we had to do to help him. I know that I naturally do well with young kids, that is a gift and as he gets older I may not be able to help him like I have been able to.
The good thing is that David has a natural gift with the 12 to young adulters so hopefully he will be able to step in at that time.
BUT we are not limited to our own gifting and we know that we can always benefit from other people’s perspectives and ideas. I try to keep an open mind as long as it doesn’t seem physically or mentally harmful and I am always willing to give something new a try. I am not an expert on these therapies but I am an expert on my son, most times I understand what he is doing and thinking, I may not always know the why until later but I relate to him. I feel many of the same sensory things, some I do not, I feel his social anxiety, I feel his misunderstanding of this world and I have found it to be very helpful. I also know my limitations and I do not kid myself about being able to help in those areas, I cannot and I do not torture the both of us by pretending to be able to. I look to others or creative resources like DVD’s and YouTube to help him with some of those. I also want to interject here that Ariel and Joshua are a large part of Daniel’s progress, they have taught him so many things that only little ones can. I hope I explained thoroughly about our story.
I share this not to be compared with others, I share this because this is what we have to do, I hope it encourages others to do what they have to do for their family and to keep up the strength to do it.