#6
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(09-05-2011, 06:28 AM)morganchops Wrote: Awwww thanks guys!
Can't believe how tough things have been since Thursday !
On the advice of Morgans psychiatrist and against the advice of my husband, I am going to walk into the social services dept this morning and see if they can offer any assistance.
I am trying to adopt the 'one day at a time' motto, but right now I think it should be one minute at a time.
I have a doctors app today with my other son whom we know has ADHD but need to go through the whole process of having him diagnosed. I don't know if I have the strength to go through the year of waiting to be seen then scrutinised!
Hayley x

Hayley you just hit the nail on the head - the appointments do make you feel like you are being scrutinised as a parent don't they! I had days when I just wanted to crawl under a rock and hide I was so sick of people telling me what I should and shouldn't be doing - but then I fought back and got quite tough with the professionals we see. After all, we know our children best don't we. I started to speak up when appts weren't convenient. I asked more questions than they expected - I always asked 'Why?' when they wanted to run tests. It made me feel more in control of what was going on. Then I started to get one step ahead and pre-empt what they were going to do next - like the diet we put Jack on - I did the research myself and waited 2 weeks before we contacted his Health Visitor to tell her and at the same time I asked if we could see a Dietician to make sure we were doing the right thing (I knew we'd have to see one because one of the books I'd read talked about consulting a dietician - but they didn't know I'd read about it). Sometimes I felt like a right bitch saying 'No' to things they wanted to do with Jack and controlling when his appointments would be but I knew if I accepted everything that was thrown at me I would just cave in with the weight of worry and pressure.

All I keep in mind is that everyone we see is helping Jack achieve his best. We've had and continue to have fantastic support. At the end of this month we have our 3rd Family Meeting and everyone who is involved with Jack is trying to get to see him to 'update' themselves. Today I have to ring the Paed to tell her that the appt she sent through (and we got on Saturday) clashes with Jack's Physio appt and right now we need the Physio appts more. We'll see the Paed but it will have to be on a Friday when Jack's not at nursery or sometime in October when my husband can come to the appt with me (she's a bit scary and I don't like going to the 'big' appts by myself).

Just keep smiling Hayley - you'll get through it all and at the end of all the appts and diagnosis reports you'll be so strong and so proud of yourself! You know where we all are - keep posting! xx
#7
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Hello, life with our son is like a rollercoaster, full of highs and lows and at times terrifying but i know i don't want to get off. Our son was finally part diagnosed a few years ago. He stops breathing and needs to be resucuitated and after 4 yrs we still don't now why. It's hard but having a disabled child makes you take a few steps back and it really is one step at a time. Taking it slow is my best advice as you yourself know the struggles you face xx
Heart Mum to Abigail 8 & Matthew 4. He stops breathing & needs to be resucitated. Has Bulbar Palsy & was born with a hole in his stomach, has mic-key tube fitted. Matt has heart/lung problems and is also tube-fed.
#8
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Thankyou!
I really thought today was going be a good day.
I tried so hard to be upbeat as my friend whom I have not seen for years came to see me but I still found it hard to give myself a shake!
Fingers crossed tomorrow will be better.
Thanks again for all you kind replies and words of support.
Hayley x


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