The missing 4 is the 4 hours Dinky actually sleeps!
What the local authorities do not seem to realise is that adequate respite for parents with children with additional needs can actually transform the lives of the families in those local areas.
I have Dinky at home 24/7, she sleeps for 4 of those and she is supposed to be in her room for at least 9 hours. However those 5 hours before she ACTUALLY goes to sleep is filled with her constantly coming down the stairs and requesting something as small as a hug, up to her trying to manipulate me into having her stay downstairs with me for a while. All the carer events going on next week for carers week, I cant go to because (and note the irony!) I am busy caring for Dinky!
Yes I said it! I am her parent and her Carer! It goes way beyond the parent child dynamic when a child has the level of need Dinky does.
What I am sick of is the ‘but you seem to be coping ok’. NO, no I am not! I love my child and it is a good thing I do as on numerous occasions I have been close to sending her back to the old school until September just to get the break I need. That may sound selfish, but I can bet you anyone who really thinks that has No idea what our life is like.
This week is half term, and this shouldn’t make a difference to us as Dinky is at home, but I swear it is so hard reading parents who do not work or who work short part time hours, rushing around to get their half term respite sorted with different workers and family members as to not have the constant onslaught of their child with additional needs. I have to pay for someone to have her for 3 hours tomorrow because I am at the point where I am thinking I cant do this. I know I will feel differently, these phases come and go, but it would be nice to actually have someone say ‘we have respite that will work for you and your child’. The social worker is supposed to be sorting it, but she hasn’t as of yet, and I don’t know if she will, as she is leaving in 2 days.
I have spoken to the SEN department and although the statement is due in 2 days, the person who is supposed to be finalising it, is off this week! I had been trying to get hold of him for 4 weeks and now he is on holiday! Considering he hasn’t sorted any of the amendments that the lady I spoke to could tell, it was going to be at least a week late. This left me in a bit of a quandary. Do I say ok, and wait for the 6th June, or do I say- do you know what, the only way I am going to get people to stop using BESD for Dinky, is to provide them with a definitive diagnosis.
So I opted for the second option. I told them that I wasn’t happy and that NO parent should have to wait to get a diagnosis to prove that the school who wrote BESD were wrong when the provisional diagnosis written by an actual medical professional- which incidentally the head teacher and senco at the school are NOT! said that Dinks has PDA, which is an autism spectrum condition not a condition that would fall under BESD as BESD generally is the description given when it seems there is no medical cause for the problems. Dinky has a neurological condition and on the 16th June I will PROVE IT!
The woman on the phone was slightly taken aback by my forcefulness, however when I explained how we go to where we are, she seemed to understand and said she gets why I am so angry.
I got Dinky’s letter for her diagnostic appointment.
The GP surgery phoned and said the GP had asked for me to pick up the ADHD scales myself and the school filled out as they would be essential for the appointment. it was interesting reading the schools one, their scores are indicative of ADHD, and to be fair, I will take them, as I am quite sure they are right she does have ADHD too. Today I asked her how she is not tired after only sleeping for 4 hours. Her response “I have lots of energy, I am Dinky!” Yep!
The Speech and language therapist came to the special needs club house this morning to see dinky’s interaction with her peers. It was interesting, Dinky was a special mix of HFA (high functioning autism) and PDA today! Again the SaLT was saying things during the visit like:
“Hmm, she is very controlling, yet she is trying so hard to play with the other child”, and “I can see what you mean, she cant just pluck something out of her imagination, she has to look around to adapt something to imaginative play”
when she was finished she said:
“Her main problem with interaction is her need to be in complete control”, and, “She has such high anxiety when she is not in control”
it does give me hope (and makes me feel better about being so adamant on the phone yesterday to the SEN team!), that Dinky will get a PDA diagnosis at the appointment.
So everything is on hold now until the 16th.