Our son Silas is getting older and turns 5 the end of this year. We are fortunate to be able to allow him another year at home before entering Kindergarten.
One thing that has become abundantly clear is that the goal placed by our child’s clinical supervisor will not be fulfilled. Initially what they had hoped to accomplish is to have Si blend in with other children in a school classroom setting.
Expectations set early on to ease a parent’s concerns I suppose they try and be optimistic. We have gone through a number of ASW’s that are overworked, unappreciated, and grossly underpaid – hence leading to burn outs. The program is government funded and we are thankful for where we live to receive what we do. It’s hard to imagine living anywhere else because these early intervention programs are rarely free.
In order to function positively as a family unit we’ve had to modify our lives everywhere. We’ve learned what works and what doesn’t. Unless you have a child yourself that is autistic you don’t grasp this. Church life has been the hardest to accept because there is no place for us. Thankful that we can still run our community playgroup (non structured).
Teachers that work directly with special needs children are pretty much the only other people that truly understand the challenges you will face as a family. Regular school teachers that operate a class room are ill equip to handle these complicated children. Regular school teachers tend to claim to know all about autistic children. Just like your GP – General Practitioner, they will refer their patients to specialist who focuses in one particular area.
Feelings of both encouragement and discouragement I seem to experience all in a run of day. Sometimes I get my hopes up in one area, to have a door close. He hasn’t shown any signs of awareness of bodily functions. Having goals is healthy, and communication was and is always going to be at the top of our list. The saying “Autism Speaks” has received a lot of heat because the reality is not all autistic children will learn to speak. We now fit into this category.
We continue to focus mainly on PECS (Picture Exchange Communication System), and are remaining in the middle phases of adapting this skill. Eventually we are told that Silas may be able to learn to use a tablet. This sounds great to us! We would love to know what Silas wants and needs are. Guessing has led to an outpouring of frustration from him.
As usual my blog is the only place I can safely write. It boggles my mind how judgmental some can be. Loads of experts out there let me tell you. Here I keep it real with both positive and negative parts of our journey. I don’t need pity, pats on the back, or condemning me for speaking about our son.
Silas is one happy little boy lately. He is finally seeing clearer for the first time. We have had our moments keeping them on. I went back to the park yesterday in the pouring rain hoping to find them. After searching high and low all over our property, turned our home upside down, God led our daughter to a place they were tucked away.
Lydia literally just stumbled upon them hidden away in a drawer where somehow they ended up? I’m taking her out this afternoon for a reward. Naturally it involves sweets :) She is one incredible sister to her brother Si. Both of our children are enormous blessings.
Psalm 37:4 Delight yourself in the Lord and he will give you the desires of your heart.