March 23, 2011

When Reality slaps you in face once more.

There are times, only when I am alone which isn't very often that I daydream.
I think to myself maybe he isn't that different.
Maybe we are making a Mountain out of a molehill.
Maybe one day we will look back, b/c they were all wrong.
Maybe he will be just fine, and life will be "normal".

And then you wake up and read that your life really is different, and not normal.
It maybe our normal, but it's really not going to "just be ok".
Shocking that I was part of this report, the words came out of my mouth. 
But living in it I get lost.

Anyways, this is where I have been. Dealing with it all.
A letter to the government on our behalf, asking for respite.

Mason Sears, a two year old boy, was seen for a speech/language assessment by this speech/language pathologist in Fall 2010 as part of a multi-disciplinary assessment to rule out Autism Spectrum Disorder (ASD).
I had the opportunity to assess Mason in his home and observed his interactions with his parents and siblings as well as with myself.

Mr. and Mrs. Sears reported that Mason’s physical, developmental, and social skills varied from day to day and within a day. This was observed during the assessment sessions. At times, Mason was happy and well-regulated, particularly when engaged in preferred and / or repetitive activities and behaviours, such as watching a favourite movie that involved Harry Potter or Peter Pan. However, within moments, Mason was observed to become aggressive towards others in his environment, whether that was his parent or another adult. Mason was also observed to rapidly shift to become aggressive with his siblings. Even as a professional who is trained to work with children with significantly challenging behaviour, I was on guard for my own personal safety while working with Mason. For example, on one occasion, I was interacting with Mason as I administered an item on the language test. Mason was smiling and talking with me; however, in an instant, Mason suddenly hit out at me with a toy, hitting me in the face. This was despite having been in a guarded state when working with Mason as other acts of aggression had already been observed towards me and others. Mason did not respond with any empathy when an over-exaggerated emotional response was given in response to the injury. Mason was observed to hit his mother and father as well as his brothers, again without emotional response or checking in to see if the targeted person was hurt. It was obvious to this speech/language pathologist (SLP) that Mr. and Mrs. Sears feared for the safety of Mason’s brothers. There is significant risk for physical injury to family members and to others who interact with Mason in his home or in the community due to Mason’s tendency to suddenly become aggressive towards others.

Mr. and Mrs. Sears reported that they no longer can have friends over to visit, especially if those friends have children, as there is a history of Mason hurting the other children. This is emotionally and socially devastating to Mr. and Mrs. Sears. Mason cannot be left in the nursery or Sunday School classroom at church, cannot attend community and therapeutic playgroups, or engage in play on playgrounds in the community due to concern for the safety of other children. This risk for sudden and extreme aggression is impacting the social interactions of Mason and his family members.
During the assessment sessions, Mason was also observed to engage in self- injurious and potentially physically harmful behaviour. Mason was observed to hurt himself when frustrated and aggressive. He had no awareness of safety within his home environment. He readily scaled to heights or onto surfaces that were unstable or unsafe. His parents were continually on guard to ensure that they could remove Mason from such situations as they spontaneously and suddenly arose. Mason was observed to scale the stove, to find a pair of scissors that had been hidden, and to reach into a kitchen drawer that contained knives or other pieces of silverware. In each instance, Mr. or Mrs. Sears quickly intervened to remove Mason from the risk situation. I was cautioned as I entered the home to make sure that my keys were tucked away out of reach as Mason had previously been electrically shocked when placing keys in electrical outlets. During the initial session, Mason was quick to notice the location of my keys and sought them out. They were removed from his possession and stored in an even more hidden location from that point on.
Mason was observed to eat and drink food that was unsafe for him, as determined by feeding team recommendations. He would seek out his brother’s bottle as well as any food or inedible item that he could find as he sought to put them in his mouth. Again, Mason’s parents were quick to intervene and remove the item from Mason’s possession. Mason’s swallowing issues put him at significant risk beyond that of other typical preschoolers due to risk of aspiration. Mrs. Sears reported that they must continuously watch Mason around any source of water, including water in the bathtub and the toilet, as Mason will attempt to drink the water if not under very close continuous supervision. This seeking out of water or thin liquids tends to become an obsessive behaviour. Due to his feeding issues, drinking such water or thin liquids could potentially cause aspiration pneumonia.

Mason was reported to be a safety risk when traveling in the car as well as when around vehicles in general. He does not keep his seatbelt on while riding in his car seat in the car, despite ongoing verbal prompts to do  so. 
Mason’s fascination with keys puts him at risk when around cars. He was reported by his parents to have put the keys in the ignition of his father’s car on one occasion.

Mason was destructive when it came to his own possessions and the possessions of others. This examiner had to closely monitor test materials as Mason was quick to reach out, attempting to tear pages and break test props. Mason was observed to walk right over toys on the floor with no regard to what he was doing. He dumped out bins of toys and threw them, rather than playing appropriately with them. Mrs. Sears reported that these were not uncommon behaviours for Mason. Mason readily threw toys and other objects around the home, with no concern for the toy itself or what object it might hit and break or person that it might injure. Mrs. Sears reported that Mason has damaged the walls in their rental home. She was concerned about the cost of repairing the damage when the potential time comes for them to move from this home.

Mr. and Mrs. Sears both looked exhausted and worn from caring for Mason both during the day and during the night. Mason was reported to not sleep well and his parents had to ensure that he remained safe during the night, especially with respect to his G-tube and feeding equipment that he wears during the day and at night, resulting in minimal sleep for them. Mrs. Sears reported that she very rarely cooks meals for the family on the stove or in the oven any longer due to safety risks with Mason. Microwaving is primarily the only means of cooking food in a safe way in the home at this time, due to the need to continuously supervise Mason. Mrs. Sears reported that it was difficult to make sure that she ate adequately or had time for personal care due to the time demands of caring for Mason.

Mason’s parents and his brothers are in urgent need of immediate respite care for Mason. Such respite care would allow Mason to be kept safe while the family could have down time from the high levels of vigilance they all personally must engage in.
Mr. and Mrs. Sears need the opportunity to have time to connect as a couple in order to preserve their marriage so that they can continue to provide strong parental support for Mason and his brothers.
Mr. and Mrs. Sears also need individual personal time to rest and distress from the ongoing challenges of monitoring Mason’s safety, medical, and behavioural issues.
It would be of great benefit for Mason’s brothers to participate in a sibling support group. This would ensure that the social and emotional needs of the brothers are met as they face the daily challenges of being a sibling to a highly reactive, aggressive, and unpredictable brother.
Mr. and Mrs. Sears also need the opportunity to spend focused time with their other two children when they are not monitoring Mason’s behaviour in order to ensure that they are meeting the emotional, psychological, and developmental needs of these boys.

Overall, Mason demonstrates ongoing and daily extreme safety and health concerns that are impacting the quality of his life as well as the quality of life of his family members.
If you have questions or require further information, please contact me.

Funny how this testing that this Person did was to rule out, Autism. But in fact got us our diagnosis.

I don't know where I was or am going with this post. Just thought you should know why and where I have been.

1 comment:

  1. Oh Dana...I am just reading this post and my heart goes out to you. I'm so glad you were able to get some of the help that you so desperately need.