Disclaimer-this post is from April!
I've hijacked Brian's blog for the time being as Brian's schedule has been pretty full. Samuel continues to received ABA therapy three times a week and progress is being made in some areas. Samuel is learning to ask specifically for what he wants. Learning to ask for the specific item has cut down on some of his frustration. We are also working toward potty-training and proves to be more difficult than expected. Samuel has learned to "push out" his urine but has not yet figured out the feeling of having to go. If he is wearing underwear and has not fully emptied his bladder he will go where he is standing with little understanding that he urinated on the floor. We have faith that he will be potty-trained in the future with the understanding that Samuel's development will not be "typical."
Samuel has become very rigid in his routine and schedule and we have to stay one step ahead anticipating any surprises. He uses a visual schedule which allows him to see what is coming next. We also verbally inform Samuel of any changes to his routine. For example, if I know I am not going to pick him up from school, I have to tell him at least a day in advance and I have to tell him who will pick him up. If Samuel knows the changes to his schedule(even if he doesn't like the choice) he seems to adjust better. However if a change occurs to his routine and we haven't explained the change a meltdown usually ensues. Meltdowns continue to happen a few times a week and usually stem around his inability to fully express his frustration and when these moments occur it's trial and error to find the source of the meltdown.
Samuel is acquiring more language with his vocabulary has been expanding it tremendously. He is able to talk in sentences putting several words together. Much of the conversation is one sided meaning that he does not engage in conversation. He will ask for things he wants and he will speak when he wants to show us something of interest (currently he is very attached to his Thomas and Friends mini trains and only desires to play with a certain few even though he has very many). He can't answer open ended questions like, "How was your day"? or "What did you do today"?, even asking him what he wants is difficult for him to answer. As his speech and language are developing he presents echolalia, which is a repetition of speech and many children with autism exhibit this. Often if we ask him an open-ended question he will repeat the question instead of giving an specific answer-he also uses more echolalia when he is tired, frustrated, or focused on an activity. We are learning when we ask him a question we should give him a specific choice such as, "Do you want milk or water to drink?", and then he is able to give an answer.
A major change in our family occurred after Thanksgiving when I stepped down from my position as a chaplain at Lower Cape Fear Hospice & LifeCareCenter. It was a very difficult decision to make as I had come to love the work I was doing, but trying to schedule visits with patients(attend meetings, document, and travel back from visits which could've been anywhere in Onslow County) pick Samuel up from school at 11:30 each day and have him ready for therapy in the afternoon (three days a week), and get Cameron from school. I became very overwhelmed. For this season in my life I am at home and while I miss my work terribly at times, I am where I need to be. I feel like the level of stress and tension in our home has lowered and that is beneficial for everyone. In the process of being a stay-at-home-mom, Samuel has become very attached to me and has separation anxiety if he does not know where I am. He does great at transitioning to his classroom each day, but I have to let him know in advance if I will be away even if it's taking a walk/jog around our neighborhood. He doesn't like it and I often leave him in tears, but if I don't tell him where I'll be it will result in a meltdown. I am grateful for his love and affection-he loves to cuddle and will find his way to my lap in the evenings and sometimes drift to sleep. Some children with autism have sensory issues with touch and do not want hugs but Samuel hasn't exhibited any signs. I am grateful for those times he wants to cuddle (even if in the moment I need a break) and I look at it as a way he communicates with me.
Samuel continues to attend Pre-K five half-days during the week and I believe this is a good balance for him. He had his annual IEP review in January and everyone was in agreement that this was a good plan. Samuel becomes over-stimulated easily in the classroom which results in some unwelcome behaviors (knocking kids toys down, running in the classroom, sometimes hitting and kicking) and by week's end he is tired. Staying until 3:00 pm would only increase those behaviors and would inhibit learning. Brian and I feel very blessed with Samuel's teachers, Mrs. Pajak and Mrs. Cassandra. They show much compassion, understanding, and patience with Samuel and truly care about his success in and out of the classroom. Kindergarten registration is coming up the first week of April and the plan is to register him. Brian and I will have a Kindergarten transition meeting sometime before the school year ends to discuss what the plan will be for Samuel next year. At this time we don't know if Samuel will be in a traditional classroom or what kind of support or resources he will receive in the next school year, but I am hopeful we can come to a consensus that will most benefit him.
Samuel is also participating in TOPSoccer, which is a nation-wide program that offers soccer for kids with physical disabilities and/or special needs. There were around 62 kids in the Jacksonville and surrounding areas who participated and everyone seemed to have a great time. Each child receives a jersey, is on a team, and has a buddy who assists him/her during practice. This gives children an opportunity for socialization and participation in a sport they may not otherwise be able to. Samuel's buddy works great with him and is very patient as Samuel has difficulty focusing and is easily over-stimulated. Samuel has a great leg on him and can kick the ball pretty far for his age. I feel Samuel is having fun when he plays and that is important to me.
I could go on and on with this post but I will digress for today. Everyday is a new day and with autism I've had to learn to take it one step at a time. Some days are better than others and being patient is the key (although I fail with patience at times). April 2nd is World Autism Awareness Day and for those wishing to participate I encourage you to wear blue. Hopefully this blog will be updated more often-you may see more post from me and some from Brian-and our hope is that this blog will raise awareness and acceptance for autism.
Blessings!
April
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