Advocacy! It is just so exhausting.

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Advocacy! It is just so exhausting.

I think after 14 years of advocating for my SN girl I am feeling exhausted and totally whingy..

 

Education departments drive me beyond my coping mechanisms - that is saying something having a SN kid. They do my head in. Each individual state advising me that yes we do have a special Ed dept and how can we help you..

 

Advice for SN parents ring your Ed dept and ask to be put through specifically to them and try to communicate via email at all times once you get a name.. Do not let go of your life line of sanity. Primary school funding with a Dx is pretty much given.

 

It took me 11 yrs to get funding in Q unfortunately we had to move interstate. It has just taken me another 18 mths but funding for teens is virtually more impossible than a Centrelink application for a carer payment.

 

Fortunately I guess - still so angry.. education wise the report has indicated my girl is 5 yrs behind her peers in learning difficulties. I gave it to school as they too, had been waiting.. and yes no funding but we can put all the suggestions into place to make life easier for her. she then replied but I could have done that testing for you in 2015. I wanted to smack her so hard as I had asked her if she could and she said No..

my girl was unwell and could see my breathing accelerate and got us away from her. My nature is just so chilled but when we got home with T2 chanting breathe mum just breathe I stood at the back door screaming and stopped when she started crying. The unfairness on our kids making their lives so difficult by the endless red tape and lack of communication in these departments.

 

Am I excited for the result - NO! Are we going out to celebrate success -NO! Because this is the 3rd time and I won't believe anything until I see the proof.

 

However after whinging, we got an appmt with the rehab team. Occupational Therapist, Soc Wkr, physio and speech pathologist. My girl will start physio as we found out she has so many issues with her hips, legs, ankles and feet (cerebral palsy) we were strangely overwhelmed but excited as she can now move forward and hopefully return to swimming and confidence. We celebrated that success. The SW has now seen me on my own to help with SN parenting which I have been doing by myself - updating me on a few new skills.

OT and SP next week  - we could be lucky enough not to have our house consistently covered in flour, food and fluids before my girl leaves home..

 

I try to put a positive spin on it but sometimes.. breathing and crying just so do not cover it. Agree?

Mod

Re: Advocacy! It is just so exhausting.

Hey @Lily17 oh wow what a journey your family has been on, you're right advocacy definitely can be so exhausting. You're doing incredibly well. I am so glad to hear there's a bit of a support team put in place and what sounds like a relatively helpful social worker in the process.

 

It's a shame that ED are so incredibly difficult to work with, the system in itself can cause a lot of frustration and pain for many people especially having a young one with ED. You're right sometimes a positive spin isn't enough, how are you feeling now after writing it all out? I find boxing a wonderful way to let off steam, some high energy tasks such as boxing/gym then low energy meditation/yoga etc.

 

What's lined up for you this week? Any day's where you can set aside and spend some quality time with yourself reading/walking/relaxing?

Parent Peer Supporter

Re: Advocacy! It is just so exhausting.

Constantly feeling like you're battling uphill is definitely exhausting @Lily17. As @Breez-RO mentioned, I hope writing and letting it out has given you some relief. 

 

Sometimes breathing and crying is the best we can do. It shouldn't take blood, sweat and tears to get such vital help for our kids. I'm really glad to have a social worker to talk with, and some new supports in place. I saw a family counsellor who helped me cope with my daughter after our time with our caseworker ended, and it was so beneficial to my parenting. 

 

My daughter's counsellor has been a great help over the years, backing me up in dealing with the school, and stepping in and cracking the whip at times. Hopefully your social worker can help you deal with the school now.

 

 

Parent Peer Supporter

Re: Advocacy! It is just so exhausting.

hi @Lily17 your resilience and unswerving grit is exactly what is needed -  and your love for your daughter is shown in every fight, every breath, every tear, and every celebration!

 

All I keep thinking as I was reading was how lucky is your daughter that she has YOU as her mum.