I read a popular 'Mom-blog' last week that suggested "We need to quit telling lies on Facebook" because sharing our best moments makes other parents feel like failures.
According to the author Sarah-Emily-Tutte-Singer, when she uses Facebook or Instagram she gives "everything a hipstacular filter to make the drudgery look interesting. Most of the time, I think I’m a decent mom, and I think I’m giving my kids a pretty good life. But I also think I’d be a better mom if I stopped pretending, and making friends on Facebook feel like they have to pretend as well."
Well, Emily, I'm here to disagree. The human brain is far too good at remembering the bad stuff. I have an entire mental showreel of the (quite literally) shitty things that can happen while parenting. I do not need to instagram the little painting that Gracie did on the bathroom wall last night. Or tweet the details of the 5 minute anxiety tantrum that Liam has when he comes in from school every afternoon.
My son at 16 is cheeky and adorable and incredibly charming. Here he is at school where everyone loves him. His new teacher took this photo and printed it off to send home so I could share how handsome he looks. She also thinks he is brilliant.
I need to remind myself of this.
Because I have spent the last week gathering evidence of how disabled he is.
You see, when Liam turned 16 last month, I was no longer eligible for a Domiciliary Carer's Allowance (DCA) on his behalf. At 16 he becomes eligible for Disability Allowance. I was supposed to prepare for this last August, but distracted by family events and an unwillingness to accept my son was "disabled" I put off getting all the forms signed by my GP until late October. At the same time I had to reapply for carers allowance on his behalf, as the eligibility was no longer based on the DCA.
Please note: NOTHING has changed. Liam is still the same kid, attending the same full time special education school on the 12th of December as he was on the 11th December (his birthday) and he will do so until he is almost 19.
On the 2nd of January I got a letter stating that I would no longer receive my weekly Carers allowance on Liam's behalf. The 'medical assessor' who reviewed the forms had decided based on the boxes ticked that Liam was medically ineligible.
His Disability Allowance had yet to be assessed as I had "only sent it in in October" - It has since been processed and the assessor came to the same conclusion. Liam isn't considered eligible on first application. I have to apply for a review.
Both the Carers and the DCA are administered by the same department in the same building. The DCA assessors had deemed Liam's care needs to be significant enough for me to pass every review for the last 12 years. When his file was passed across the hall to Carers on his 16th birthday, his condition no longer existed. Disability allowance is in a different building but seem to be applying the same criteria:
Severe Autism and a Learning Disability isn't enough.
So here I am, 2 weeks later scanning letters of care needs to be sent on to each department. Detailed letters that state all of the ways that Liam isn't a typically developing teenager.
The Psychiatrist's letter actually made me weep so I quickly shoved it in the scanner to be saved and emailed off to the review officer.
To say this has shagged things up for us is quite the understatement. As a Social Entrepreneur, I am trying to do some good in the world, but you can't pay your car insurance with social profits. I rely on my pension to live week to week. This event has cost us €700 a month, and the review process can take weeks or even months.
So I need to keep reminding myself of the positives.
My Psychiatrist, who I consider a family friend told me we have to be pragmatic about it, that we need this help and we have to play by the rules to get it. But it doesn't mean I have to believe in it.
When the appeal is done and we can afford to go out for sushi and a new DVD with Liam again, I am pushing all that negativity to the back of the filing cabinet.
And I will go back to thinking about these:
You are welcome to share in this by following Grace and Liam's Facebook pages. Liam updates and writes the comments himself.
I think that these are our 'historical documents' - a record of how we lived our daily lives. Facebook
(or #Fakebook as Ms Tutte-Singer wants us to call it)
is my generation's cave painting of Lascaux . It's the Pompei of the digital age and I intend that when my contribution is dug up, that the archeologists will see how much love we had in our lives.
I think my children deserve that.
xx
Authors note: I am getting invaluable help and support with my appeal from our local members Deputy Simon Harris and Deputy Stephen Donnelly who responded to my call within a day of getting the refusal. Simon's staff have actually been liaising with the department on my behalf and keeping me informed daily. I wish I didn't need it but I do. I have also received a huge amount of moral support from my friends on Twitter and Facebook.
According to the author Sarah-Emily-Tutte-Singer, when she uses Facebook or Instagram she gives "everything a hipstacular filter to make the drudgery look interesting. Most of the time, I think I’m a decent mom, and I think I’m giving my kids a pretty good life. But I also think I’d be a better mom if I stopped pretending, and making friends on Facebook feel like they have to pretend as well."
Well, Emily, I'm here to disagree. The human brain is far too good at remembering the bad stuff. I have an entire mental showreel of the (quite literally) shitty things that can happen while parenting. I do not need to instagram the little painting that Gracie did on the bathroom wall last night. Or tweet the details of the 5 minute anxiety tantrum that Liam has when he comes in from school every afternoon.
What I do need is to keep collecting snapshots of how terrific my kids are.
 |
| My handsome 16 year old son. |
My son at 16 is cheeky and adorable and incredibly charming. Here he is at school where everyone loves him. His new teacher took this photo and printed it off to send home so I could share how handsome he looks. She also thinks he is brilliant.
I need to remind myself of this.
Because I have spent the last week gathering evidence of how disabled he is.
You see, when Liam turned 16 last month, I was no longer eligible for a Domiciliary Carer's Allowance (DCA) on his behalf. At 16 he becomes eligible for Disability Allowance. I was supposed to prepare for this last August, but distracted by family events and an unwillingness to accept my son was "disabled" I put off getting all the forms signed by my GP until late October. At the same time I had to reapply for carers allowance on his behalf, as the eligibility was no longer based on the DCA.
Please note: NOTHING has changed. Liam is still the same kid, attending the same full time special education school on the 12th of December as he was on the 11th December (his birthday) and he will do so until he is almost 19.
On the 2nd of January I got a letter stating that I would no longer receive my weekly Carers allowance on Liam's behalf. The 'medical assessor' who reviewed the forms had decided based on the boxes ticked that Liam was medically ineligible.
His Disability Allowance had yet to be assessed as I had "only sent it in in October" - It has since been processed and the assessor came to the same conclusion. Liam isn't considered eligible on first application. I have to apply for a review.
Both the Carers and the DCA are administered by the same department in the same building. The DCA assessors had deemed Liam's care needs to be significant enough for me to pass every review for the last 12 years. When his file was passed across the hall to Carers on his 16th birthday, his condition no longer existed. Disability allowance is in a different building but seem to be applying the same criteria:
Severe Autism and a Learning Disability isn't enough.
You have to prove how hard things are, in detail.
 |
| Just got to remind myself of that cheeky "camera" smile once again to wash away the negativity. |
So here I am, 2 weeks later scanning letters of care needs to be sent on to each department. Detailed letters that state all of the ways that Liam isn't a typically developing teenager.
The Psychiatrist's letter actually made me weep so I quickly shoved it in the scanner to be saved and emailed off to the review officer.
 |
| This snapshot of my teenagers enjoying a Friday Night in with their Parents got 100 likes in 2 hours. Turns out other special parents can appreciate how lucky we are to know what our kids are up to! |
To say this has shagged things up for us is quite the understatement. As a Social Entrepreneur, I am trying to do some good in the world, but you can't pay your car insurance with social profits. I rely on my pension to live week to week. This event has cost us €700 a month, and the review process can take weeks or even months.
So I need to keep reminding myself of the positives.
 |
| Liam doing his "catalogue pose" in Cabinteely Park. Taking a break from Screen time for Fresh Air. |
It's too easy to have bad things cloud our minds. We need to make a conscious effort to take positive mental snapshots and store them for when we need them most, and what better way to do that than actual social media?
 |
| Gracie taking her first walk in Cabinteely, a city park instead of her usual walk in the mountains. She tolerated Change! |
When the appeal is done and we can afford to go out for sushi and a new DVD with Liam again, I am pushing all that negativity to the back of the filing cabinet.
And I will go back to thinking about these:
 |
| Gracie practicing hurling in the Summertime |
 |
| Modeling his sister's christmas present which he claimed. |
 |
| Modeling the haircut and blow dry he got after waiting 45 minutes at the Barber! Three people were ahead of him and he sat and waited beautifully. |
 |
| Gracie convincing her Teacher that drawing teletubbies on MS Paint is 'work" - worth rewarding with a chocolate bar. |
I think that these are our 'historical documents' - a record of how we lived our daily lives. Facebook
(or #Fakebook as Ms Tutte-Singer wants us to call it)
is my generation's cave painting of Lascaux . It's the Pompei of the digital age and I intend that when my contribution is dug up, that the archeologists will see how much love we had in our lives.
I think my children deserve that.
xx
Authors note: I am getting invaluable help and support with my appeal from our local members Deputy Simon Harris and Deputy Stephen Donnelly who responded to my call within a day of getting the refusal. Simon's staff have actually been liaising with the department on my behalf and keeping me informed daily. I wish I didn't need it but I do. I have also received a huge amount of moral support from my friends on Twitter and Facebook.
Comments
I know just how important it was for me growing up, to see all the pictures and "slide nights", of our fun family times. It makes these memories stronger, and the bad stuff fade away.
For me, a big part of my blog, is to make me focus on the beauty and great stuff that can be found in very little thing, then revel in it.
Here to seeing the world with our rose coloured glasses!
K-Line: It means so much to hear that. Thank you xx
Super K: I get exactly what you mean. There was a lot wrong with my childhood (but I guess that is why I am so resilient today) But while preparing for a funeral, then a 90th Birthday, my sisters and cousins were able to look back at some very good times captured on Kodak paper.
Of course, we uploaded them all to Facebook so we can continue to laugh at each other across the miles.
(and forget the shitty things)
xx
Best of luck with the Carers and DCA. Really looks like they see 'Autism' and immediately refuse?
Keep posting those true happy photos.
xx Jazzy