Last week we were getting changed after swimming and a sauna. Eldest asked Small about some scars she has. Small explained that when she can’t get her clothes on because they are hurting her, she instead scratches herself as hard as she can. Small said the pain from scratching till it bleeds stops her thinking about the sensory pain from putting clothes on.
Small asked Eldest about some of her scars. She was curious as Eldest doesn’t have the same problems with clothes that she does. So why would she have hurt herself? Eldest was confused for a while and looked me, not knowing what to say to her little sister. I wondered out loud if Eldest could think of other things she might want to distract herself from by hurting herself. Eldest thought then said yes maybe to stop herself thinking about difficult thoughts or when she feels anxious. She said she likes to use sharp things to scratch or cut herself.
And my girls stood comparing scars and chatting about when and how they did them, as though this was the most normal thing in the world to do when you are 8 and 10 year old little girls.
And I managed not to cry. But only just.
Silence means I am overwhelmed by so many thoughts that I don’t know where to start.
Silence means I fear you may not understand my words nor my meaning.
Silence means I am worried about rejection or accusation.
Silence means I have said it all before and still it goes on….and on….and on….
“He who does not understand your silence will probably not understand your words.”
― Elbert Hubbard
So how has going back to school been for your cherubs? For us it has been a mixed bag really and has reminded me that the summer holidays at least gave me respite from the stresses school brings to both the girls and to me.
This weekend I have reflected on what is the minimum I would like from my children’s teachers? I have narrowed it down to five things! Perhaps this applies to all parents of children with any SEN and not only those with adopted children.
- Read the professionals’ reports. I know you are busy. You have 20 children in your class. I am also a teacher and I will teach about 150 students this year. I’ve been back in work 3 days and I have already read and made notes on key information for any SEN students I will teach next week. I have a list of students I need to find out more about. Isn’t that what teachers do?
- Accept that the professionals know more than you about their specialisms. I know you are probably an amazing teacher. That’s because you went to university and trained for that career. There are other people who have become OTs, SALTs, psychologists, psychotherapists and paediatricians. They are specialists in their fields and you need to accept what they are telling you. You do not know better than them because you read a book or an article online.
- Listen to my child’s behaviour. My child is trying to communicate how she is doing. It’s too hard for her to tell you but she can show you with her behaviour so observe and then support her accordingly. If my 8 yr old is sitting under a table then I think you can see she is having a hard time and needs a break from the classroom. If my 10 yr old is chattering non stop about everything and nothing she is showing her anxiety about being in class and she needs a break from the room.
- Fiddle toys are not the answer to everything. I have provided both my girls with sensory boxes to use in class and you are very accepting of my child having free access to them in class. For this I thank you. But these are just one of the recommendations from professionals. I know it is easier for you to believe they are the answer to everything. But they are not. They are one small part of the package of support my child needs.
- Trust me as their parent. It seems difficult for you to accept that I know my children inside out. I know what they can manage and what they cannot. I know what they struggle with and how far they can be pushed them before they will crack. I support you and I can help you if only you will let me. How about it? I’m up for it if you are!
It’s been so long since I’ve blogged that there may be nobody left to read this! I think it reflects how hard the last year has been for us at 3girlstogether. There came a point where I felt that nobody would want to continue reading me talking about lack of access to ASF, lack of support from SWs and other profs, and patchy support at school. I was even boring myself talking about the vicious circle we were trapped in.
Today I have decided I will try to think about how far we have come since my last post. For this post at least I will gloss over everything else. So here is what has changed in the last 9 months:
- We have survived another year at school.
- We have accessed ASF for assessments by specialist providers and have (nearly) got the finalised reports and costings for therapeutic input and further assessments.
- I have tribunal dates for the LA’s refusal to assess for EHCPs for the girls.
- I have finally found a nanny/support worker who will enable me to work and also give me one to one time with the girls each week.
- Our local peer support group is going from strength to strength and now has over 60 members.
- The girls now have a paediatrician which means they can quickly access other specialist referrals.
- In term time I do something that I enjoy one morning a week
Actually when I look at that list I feel a little bit proud of what I have achieved in 9 months. Maybe I should blog more often!
Before I start a few ‘yes I know’s:
Yes I know we are lucky to have access to an Adoption Support Fund at all and those in Wales Scotland etc do not
Yes I know that therapy is not going to ‘fix’ my children
Yes I know there are cheaper providers of therapy available but those who know the girls, including professionals, have agreed on these providers as being in the best position to support us as a family
Yes I know that social workers have a difficult and often thankless job, have far too big case loads and too little time and in some cases training.
I applaud the introduction of the ASF and am delighted that it is available to adopters like us.
Here are some facts about the process we have been through to access ASF funding
We have had 2 assessments of need by 2 different local authorities in less than a year.
Both assessments of need conclude the same specialist provider should conduct comprehensive multidisciplinary assessments of both girls
We had to have an initial consultation from this provider, due to the complex needs of both girls and of our family as a whole, which proved stark reading but seemed very accurate to those who know the girls, including two different PASWs from different local authorities.
This should be great news shouldn’t it!
Except this process has spanned 66 long weeks so far.
There was a 24 week delay between my current LA first submitting costings to ASF and them resubmitting the same costings after conducting an assessment of need that confirmed everything in the previous one. They resubmitted on the day Edward Timpson announced new rules for ‘fair access’ to the ASF
Of course we meet the criteria for exceptional circumstances that the ASF sets out. That goes without saying.
Of course the LA ‘are not in a position to contribute to the funding’ so they will not match-fund for us.
Their suggestion is we have some assessments now and the rest in April 2017. That will be week 88 of the process. 88 weeks! How can this possibly be right?
I am going to have to borrow money to pay for some assessments which the ASF no longer funds but which it did when our application was first submitted but I can’t borrow it all.
I apologise because this is a pointless blog. I guess it achieves nothing except allowing me to vent a little.
But I feel like screaming:
MY GIRLS NEED AND DESERVE MUCH BETTER THAN THIS!
Things have been up and down with the girls’ school this year; some great moments and frankly some dire ones. One thing that has been consistently wonderful this year is the support from the Learning Support Assistant (LSA) in Small’s class this year. Without her Small would not have got through the year. This lady met Small every morning and patiently chatted to us until Small was ready to leave me and go in, whether that took 5 minutes or 20. And then end of the day she always took time to let me know how Small had been during the day. She understood Small’s needs better than anyone ever has in school and could tell how she was feeling just by how hard Small bounced against her in the morning! She tried to be there for my girl as much as she could (though we could have done with her all the time!) and gave her vital emotional support as well as sensory breaks which she introduced herself after reading up at home 🙂
At the end of the year I sent her some flowers and wrote her a card. What I wrote isn’t amazingly poetic or beautiful, because that’s not who I am, but it was heartfelt.
To Mrs X
If I say you’re one in a million you will think it is a cliché but I actually mean it. We both know Small would not have survived this year without you.
Thank you for giving my little girl what she needed when I wasn’t there to do it. Thank you for listening to her, squeezing her, dancing with her and bouncing her. Thank you for gently reminding her of the boundaries without shaming her and thank you most of all for instinctively knowing what she needs and making sure she gets it. You have made it possible for Small to come to school this year.
We will miss your kind and intuitive support for her.