"Always make decisions with I before e -- intelligence before emotion, that is."
Easier said than done really. I have been sitting outside tonight after a long day, helping out at my eldest son's swimming carnival. Enjoying the peace and serenity that this offers. I sit out side a lot. Usually when the boys are asleep, just thinking about things, about the day, the challenges I will face or reflecting on, how it was that I managed to get through a really difficult situation. My thoughts are usually clear and I can contemplate or recharge.
But I my mind is heavy tonight. I know that I am tired and maybe that is why my ability to be strong and positive is questionable.
Today when I was at the carnival, I had received a phone call from my youngest child's paediatrician. I had contacted him a few days ago about a mountain of paperwork I needed to discuss with him and a possible appointment to investigate issues my son was having regulating his sensory needs. As I have said earlier, my youngest, was having a really difficult time at school.
We talked about his sensory traits, the issues he was having, the lack funding and grants available to aide my son after he turns 7 years old etc. (It is so incredibly frustrating that there is not much available to support him. I mean it is not like my child's Autism is magically going to be cured on his 7th birthday.)
Anyway we got onto the topic of his tonsils. This is not new information to me. I had been to see an Ear, Nose and Throat specialist when my son was 2 years old. This was before he was diagnosed. I guess at the time, I was having his eyes tested and his hearing tested, all in hope that the reason why my child could not speak, was something other than Autism. Anyway the E.N.T I saw, who was a family friend, told me then that my child had extremely large tonsils. But other than ear infections and early teething as a baby, he had not suffered from any tonsil or throat infections. The decision was made to wait and see. It wasn't until last year when I changed paediatric specialists, that the topic of his tonsils arose again. They are incredibly large, almost blocking his throat. By then, yes he was having many infections. They usually followed weeks of no sleep and distress, as my boy cannot tell you if he was sick, or if anything hurts.
On top of this, a high sensitivity to pain, and having no ability to blow his nose, these infections were difficult to handle. I was asked again, if I had followed through with the referrals, (which I had not.) There were many factors as to why, or maybe just excuses. I tried to reason with myself; the fact that he hadn't been sick, I was dealing with bigger issues, financial issues and of course, the clincher; I was terrified of going through with this process. I had been informed that this would be no simple operation. It would maybe involve sedation afterwards, feeding tubes and weeks of discomfort. The thought of my child rupturing his throat, causing bleeding, with a squeal or head butt, basically scares the living day lights out of me. So all I could do was listen!
It has to be done. I cannot put it off any longer. I got goose bumps at the thought of having to deal with this. I know I am a strong willed person, achieving a lot, but suddenly I felt really insecure. I will have an appointment before the month is out with the E.N.T specialist and from there it will be a matter of time, booking him in. Now I am certainly not new to challenges or drama. I watched my son go through EEG's and febrile seizures only last year. Again this was something new and extremely frightening. It's difficult to see your child go white, drool, eyes rolled back in his head and fearing the worst, as you are unable to bring him out of his unconscious state. Luckily for us, that is all it has been... Febrile.
But I guess for some reason, tonight I am beginning to doubt my strength. I am desperately looking for something to give me the courage to just cope.
I know, that I must not be emotional in my decisions. I know that I cannot allow myself to be stressed or anxious, as my son will only pick up on it. I know I must be positive and confident especially around my older son. I know my children will look to me for reassurance and courage.
I know all this.... but the question I am asking myself tonight, is how am I going to do it?
I am a mother and a woman. I am passionate about life and in my role as a guide to my children. I am fiercely protective of their welfare. But I am only human. I am emotional - but that is what is needed to raise children in a loving, caring and nurturing manner. I have fears and doubts, all of which I cannot afford to show.
I think at times, even though I wouldn't change anything in my life right now.... I wish it wasn't my kids. I wish I didn't have all this responsibility to deal with, that I didn't have to be everyone's "rock" or "tower of strength". Sometimes..... it's just hard...hard living in this ASD world!
Today when I was at the carnival, I had received a phone call from my youngest child's paediatrician. I had contacted him a few days ago about a mountain of paperwork I needed to discuss with him and a possible appointment to investigate issues my son was having regulating his sensory needs. As I have said earlier, my youngest, was having a really difficult time at school.
We talked about his sensory traits, the issues he was having, the lack funding and grants available to aide my son after he turns 7 years old etc. (It is so incredibly frustrating that there is not much available to support him. I mean it is not like my child's Autism is magically going to be cured on his 7th birthday.)
Anyway we got onto the topic of his tonsils. This is not new information to me. I had been to see an Ear, Nose and Throat specialist when my son was 2 years old. This was before he was diagnosed. I guess at the time, I was having his eyes tested and his hearing tested, all in hope that the reason why my child could not speak, was something other than Autism. Anyway the E.N.T I saw, who was a family friend, told me then that my child had extremely large tonsils. But other than ear infections and early teething as a baby, he had not suffered from any tonsil or throat infections. The decision was made to wait and see. It wasn't until last year when I changed paediatric specialists, that the topic of his tonsils arose again. They are incredibly large, almost blocking his throat. By then, yes he was having many infections. They usually followed weeks of no sleep and distress, as my boy cannot tell you if he was sick, or if anything hurts.
On top of this, a high sensitivity to pain, and having no ability to blow his nose, these infections were difficult to handle. I was asked again, if I had followed through with the referrals, (which I had not.) There were many factors as to why, or maybe just excuses. I tried to reason with myself; the fact that he hadn't been sick, I was dealing with bigger issues, financial issues and of course, the clincher; I was terrified of going through with this process. I had been informed that this would be no simple operation. It would maybe involve sedation afterwards, feeding tubes and weeks of discomfort. The thought of my child rupturing his throat, causing bleeding, with a squeal or head butt, basically scares the living day lights out of me. So all I could do was listen!
It has to be done. I cannot put it off any longer. I got goose bumps at the thought of having to deal with this. I know I am a strong willed person, achieving a lot, but suddenly I felt really insecure. I will have an appointment before the month is out with the E.N.T specialist and from there it will be a matter of time, booking him in. Now I am certainly not new to challenges or drama. I watched my son go through EEG's and febrile seizures only last year. Again this was something new and extremely frightening. It's difficult to see your child go white, drool, eyes rolled back in his head and fearing the worst, as you are unable to bring him out of his unconscious state. Luckily for us, that is all it has been... Febrile.
But I guess for some reason, tonight I am beginning to doubt my strength. I am desperately looking for something to give me the courage to just cope.
I know, that I must not be emotional in my decisions. I know that I cannot allow myself to be stressed or anxious, as my son will only pick up on it. I know I must be positive and confident especially around my older son. I know my children will look to me for reassurance and courage.
I know all this.... but the question I am asking myself tonight, is how am I going to do it?
I am a mother and a woman. I am passionate about life and in my role as a guide to my children. I am fiercely protective of their welfare. But I am only human. I am emotional - but that is what is needed to raise children in a loving, caring and nurturing manner. I have fears and doubts, all of which I cannot afford to show.
I think at times, even though I wouldn't change anything in my life right now.... I wish it wasn't my kids. I wish I didn't have all this responsibility to deal with, that I didn't have to be everyone's "rock" or "tower of strength". Sometimes..... it's just hard...hard living in this ASD world!
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