We're still enjoying some time off 'school' to rest, recover and prepare for next term.
On Thursday, we went to visit friends in Aylesbury. The kids are quite close in age to Jack and Grace and they played, jumped on the trampoline, listened to music etc. J and I talked. We had lunch. J did chocolate fondue for us. That was fun! It was a nice visit.
On Friday, Jamie took some time off work and went in late. Grace went to Gemma's house with Jamie-Leigh and they stayed there all afternoon. Jamie and I had an appointment with a benefits advice service to get help filling in some very complicated government forms applying for the financial assistance we are apparently entitled to. It is non-means tested and available for helping raise children with special needs. She will be eligible for this help herself later. It was a painful process of meticulously detailing all of Grace's 'deficiencies', (social, mental, intimate, physical details) on paper, something we'd never done before. I had to bite my cheek several times to stop myself from crying. It felt like such a betrayal of her confidence, her privacy.
The advisor told us we'd need to obtain a Power of Attorney for her when she is an adult (age 18) to manage her financial affairs. That made me feel physically sick. I couldn't talk about that and quickly changed the subject. Every step along this road is like walking on shards of glass.
Later we all came home and had dinner. I kept looking at Grace and wishing she was just my difficult, tantrumming, extreme toddler again. Stressful as having an autistic child at age 3 definitely IS, having a young adult who may never make it to real 'adult' status is much, much worse. Jamie went in to work (late shift) and I stayed frozen to the sofa, catastrophising.
Not much sleep last night. But a weekend to organise now.
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5 comments:
{{{Dorothy}}}
I'm sorry. This would be terribly difficult but will be beneficial to Grace in the end to have the benefits.
I am glad you have the lady you mentioned earlier to talk with.
My prayers are with you, though I have no great words to share.
This must be so terribly hard. I really can't imagine how difficult. You are doing such a wonderful job of advocating for Grace.
Praying for you all.
Dorothy, the light is a bit dull right now for you when looking through the tunnel, but you have the BEST guide imaginable holding onto your hand. Christ isn't only your protector, comforter and saviour, He's your promise that although life is not smooth, He'll take care of the rough moments along the way. Try not to hold on to the future before it even happens. Wonderful things are in store for Grace! This can be assured, if for no other reason, than because she is a child of God and loved completely by the parents He picked JUST FOR HER.
God's blessing upon you as you take the terrifying steps in trusting your precious daughter to Him! I wish I could be better support for you in person, but perhaps that's another wonderful aspect of having a blog :)
I love you my friend!
W
Oh, Dorothy. Nothing to say, but know that you have friends praying for Grace, for you and Jamie, for your family.
{{{{HUGS}}}}
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