Friday, 14 April 2017

FFS Friday - Onwards and upwards

This week Chai's sensory issues escalated to the point where I needed to take immediate action. He needed to see an Occupational Therapist asap.

Trying to get help for Chai has been so difficult. The OT that the school referred me to takes at least 40 days to get into. 

I call them first thing Monday morning and told them that our situation has changed and we need help immediately. They refused to expediate our appointment. I asked if getting an urgent referral from the Dr would help and they said that it wouldn't! WTF?

When that failed I took Chai to the Dr to get a referral to a different OT.    

Why is the medical profession so belittling of a mother's opinion? It really, really annoys me. The parents know their child better than anyone, their opinion should be held in high regard not belittled. 

I say this after the last two referral letters from our Dr's. They are both lovely, compassionate people but their referral letters are crap. 

The one we got on Monday said "This results in vomiting - which is distressing Mum." FFS.

What a load of crap. The vomiting was distressing Chai and of course I don't like to see him upset. And really, what has me being distressed got to do with anything? It has no bearing on the issue at hand which is Chai's sensory problems. My distress or lack of distress is irrelevant. 

I'm willing to bet that if Tiger had taken Chai to the Dr his emotional state would not have been mentioned. Even more annoying, I was not distressed when I spoke to the Dr, I was calm and rational.

Regardless, I walked out of the Dr's surgery with a referral letter. 

When I got home I googled the person that the Dr referred me to and it was a psychologist! WTF? I'd told her that we were seeing a great psych and that the psych said we needed an OT, so she referred me to another psych?

Thinking that they might have an OT that works with them, I called the psych on Monday. They didn't return my call until Wednesday. 
They don't have an OT that works with them. FFS. 

Wednesday was way too late anyhow, I'd already sorted things by then.  

I managed to find a private OT who I didn't need a referral to and when I explained the situation to them they got me an appointment the next day. Finally someone taking me seriously! It's crazy that I've had to be so pushy to get anything done for Chai.

I'm very, very grateful that I have had the time and energy to do all the groundwork to get Chai's issues treated. If I was working I wouldn't have been able to get things sorted.  

We saw the OT on Tuesday and she was lovely. She said that from the information I'd given to the receptionist it sounded like Chai had sensory issues so she went straight into the sensory appraisal.  

Yesterday I got the report from the OT and she confirmed my suspicions. Chai has sensory issues. It's such a relief to finally know that I'm not going crazy and that things are going to get better. 

We've got appointments every fortnight for the foreseeable future, hopefully there will be some noticeable changes in Chai soon. 

The OT also works with the school so that they can help Chai too. Until his sensory issues are sorted he isn't capable of learning, which explains why he's so far behind. 

I really need there to be changes soon because I can't continue like this and retain my sanity. 

Wednesday night I felt like I was on the verge of losing it. It had been a long tough day and I desperately needed a little bit of quiet time at the end of the day.

Naturally Chai chose that as the night that he would not GTFTS. I put the boys to bed and Chai got up. He would only go to sleep laying next to me with his body pressing against me and his arm across my waist. What I wouldn't give for some quiet time with no-one touching me.  

It's funny how one diagnosis can explain everything. All the issues I've had with his sleeping, school, his behaviour at home, his lack of core strength and fine motor skills, his anxiety, they all stem from sensory issues.   

Now we have a diagnosis it's onwards and upwards. Finally. 

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