And so it begins again, Fighting for Freddies Therapy

And so it begins again. Last summer I requested a meeting with the Head of Speech and Language for Special Education along with Freddie’s therapist at school to discuss the provision he is entitled to.

I wanted more.

Developmental Verbal Dyspraxia

Freddie has a severe speech and language delay and Developmental Verbal Dyspraxia/Apraxia. Added to this, he has a learning disability. This means he needs a lot of intervention. Just to put this into context. If you live in America and have Developmental Verbal Dyspraxia/Apraxia you can receive three 45 minute sessions of therapy each week or three to five 30 minute sessions. Before my meeting last summer, Freddie was receiving one 15-20 minute session each week during term time. This only totals approx 12 hours and 20 minutes therapy a year. Due to his therapists school meetings and other commitments, he didn’t receive around a third of his provision. So really he only received around 8 hours therapy all year. 8 HOURS!

That is well over 100 hours less therapy each year than in America. I realise their health system is different. I wasn’t expecting to get the equivalent without paying for it but I did want two 30 minute sessions each week during term time. Regular intervention is key.

“To summarize, although there are differences in definitions of intensive remediation for children with CAS, there appears to be emerging consensus within the literature that therapy should be conducted at least three to five times weekly, in sessions lasting between 30 and 60 minutes each, and that the intervention should be conducted on an individual basis.” Penelope K. Hall, Linda S. Jordan, Donald A. Robin, Developmental Apraxia of Speech: Theory and Clinical Practice, 2nd Edition, page 200, Pro-ed Publishers, Texas, 2007.

I got into Velvet Bulldozer mode, I planned my well formed outcomes for the meeting and was in a very resourceful state. To my delight, I got what I wanted. The meeting went smoothly and successfully. They agreed, double the provision and then some. It was implemented in September 2016 with a plan to review in January this year, followed by a meeting to discuss his progress or lack of. This meeting was yesterday with his wonderful teacher and his SALT.

I’m so disappointed. Even though he has been making superb progress, something which has been noted by everyone who works with him, his Speech Therapist informed me she didn’t think he needed to continue with the additional therapy and intervention. “He is doing ok.”

She seemed to think that he would be fine with just one session a week and probably not even a half an hour one, alongside his daily input from class and from me at home running the private therapy we buy in.

What if he didn’t have the additional from us? What if we couldn’t manage it or didn’t have capacity to carry it out, would it be different then?

All of our children who need Speech therapy or therapy of any kind are being done a huge disservice by being refused the relevant intervention. I know budgets are tight but they are also often wasted.

There are a number of concerns I have from yesterdays meeting, i won’t go in to them all but the main result is that I now have to go back to the start and fight once again for his Speech Therapy provision. Why would you take it away from a child who is doing so well?

So, The Velvet Bulldozer strikes again and I planned out an email to the Head of Speech and Language, his current SALT and cc’d his teacher (who is in agreement with me) to request another meeting after half term with the new members of staff. I have made clear how disappointed we are and that, especially as this provision is detailed in his ECHP, I want it reinstated. One of the positives here is that his current SALT is retiring so hopefully we might be able to start a fresh.

I told her again yesterday, something which I have said before numerous times. We fully believe in Freddie. That he can reach is fun potential with enough of the right support and intervention. We as his parents do as much as we are able both physically and financially but we need professional support to back this up. I don’t want Freddie to be in a situation where he isn’t progressing as he should be because someone has decided to remove his provision. I don’t want to look back on this stage in our lives and doubt that we gave him everything that was possible.

The Life Olympics

Our children are training for the Life Olympics each and every day of their lives and deserve all the support and intervention possible to help them win those Gold Medals.

You wouldn’t find Usain Bolt (image courtesy of biography.com) winning any Gold Medals on just 12 hours training a year would you! This is the analogy I used yesterday. Not much come back from that, funnily enough.

So, I will be planning my well formed outcomes and getting into a resourceful state ahead of the next meeting to get some positive results. I want what I want for my boy and this Velvet Bulldozer is going to get it. Wish me luck.

Looking forward to our Velvet Bulldozer workshop next week on February 16th. x