A flawed system vs parents that coped for too long… Just a normal day navigating ASD and ‘professional involvement’

I crack. I know they hear my tears. I plead. “Who should I tell that we are falling apart?”

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First. Just a brief back ground. Until Nov 2016, there had been virtually zero professional involvement as our son had no diagnosis and school were ‘managing’ him. We however were simply existing but painting a good picture. We had a behaviour plan and a support plan; neither of which meant that anything was really changing or improving and for many years we had battled to be heard and get support. We had made it onto the ASD waiting list and had a behaviour support worker linked in with the school who had suggested PDA strategies in handling our son. 

Then came a short fixed term exclusion. Followed by a prolonged period of being let down. Let down by the School, the education welfare system and health professionals. 

Skip on a couple of months and we now have an ASD/PDA Diagnosis. Our son currently attends a short term provision which is 25 miles away because his mainstream school refused to take him back. He’s been there 3 and a half weeks. He’s been excluded twice. Daddybear and I have exhausted our holiday entitlement and sick pay and we now have a council provision taxi and personal assistant chaperoning to and from school.

And so I jump to today. 

Started early. Severe lack of sleep from the 4 night time scream fests in the middle of the night. He’s petrified of his school and the volatile environment even though his behaviour accounts for about a tenth of what happens there (there’s only about 10 kids). Despite voluntarily getting dressed and a minimal amount of support to get food inside him today, he then began to show us just how anxious he was ahead of his transport arriving. The physical outbursts began. The avoidance strategies. The defiant behaviours. The spiteful hurtful tactics. The self injurious attempts. The lashing out. The emotional blackmail. The manipulative stance. All to no avail. You see, I have to go to work. I can’t take him. I can’t stay here. I can’t comfort him. And most of all I can’t make this better. I also have bigger bruv to get to school too. This poor little brave soul who strokes my back in reassurance as I endure another physical attack; the amazingly supportive 9 year old who attempts to cajole and encourage little bruv to conform and he who tries to passify the commotion and comfort his mummagrizzlybear and little bruv. Eventually, with tears, snot and mummabear bruises amidst declarations of love, he’s carted off to school and I deliver bigger bruv to his school gates willing him to have a good day and reassuring him with a strained smile marked by leaky mascara.

On return and in despair I call MARU, knowing this can’t go on much longer. We’re a family crumbling. There was a referral put forward by CAMHS for a disability social worker and we’ve not heard back so I thought that might be worth chasing up. Guess what… they can’t find/see that referral, but they’ll get back to me! I crack. I know they hear my tears. I plead. “Who should I tell that we are falling apart?”

Then I get a call from Early Support area coordinator, calling about the forthcoming TAC meeting and to explain to me their role. Turns out, they’re involved to coordinate the professionals involved. All of the professionals involved have declared they cannot be the lead professional and so I ask, as coordinator,  can they resolve this ahead of the TAC. To this he replied that this might mean that the early support TAC was not going to work after all. 

I crack. I know they hear my tears. I plead. “Who should I tell that we are falling apart?”

Fortunately he has time and hears me. He says he wants to help. However an intervention/support he has in mind needs approval by a manager who isn’t available until tomorrow and he doesn’t want to get my hopes up by telling me what this may be just in case it’s declined. In addition, should social care disability team become involved this will prevent this teams engagement with us.

Through the day I am contacted by the transport company who feel for me after watching each daily ordeal to get a very scared little man in their taxi. She says “you shouldn’t be sending him there “… thanks! I know this is wrong for him but it’s all we have. She recommends some provisions that other children she has transported went on to attend. She also recommended some support agencies she has heard of. This is a taxi driver who cares, doing way more than the council pay her to.

So I call. The recommended provisions sound nice. They sound accommodating and much closer to home and as though they can meet our sons needs. But they are full. They also require an EHCP, something, although promised and finally acknowledged as necessary, nobody has applied for at present. The mainstream he was excluded from still holds all the cards and refuses to follow protocol and make the required referrals (nobody is prepared to hold this school accountable for their lack of action/support in initiating the TAC/ Applying for the EHCP or referring to the County EP). The mainstream wished to wash their hands of him and have done a fantastic job of isolating a family in need. Without the EHCP I can’t even begin to talk to the specialist provisions about securing him a place in their full schools. It’s endless.

I called and spoke with the recommended support services who needed the social workers details… Guess what… We don’t have one (yet) so this agency cannot help us at this stage but referenced their amazing package of care available if our ‘needs assessment’ (which we haven’t had) indicated that such a package was necessary. 

I called and spoke with the temporary provision alerting them to the issues we had through the night and this morning’s antics and asking for ideas about how we can help him feel less scared. It’s pretty fruitless. The staff there are supportive but stretched and have to pick their battles between achieving a day where minimal children destroy their setting or striving to offer a learning environment to the few in a state fit for learning. As they are temporary they will not act as a lead professional at a TAC.

The family worker we have (who eventually initiated the TAC) is due to ‘close’ next week having completed her piece of work with us. 

The social emotional behaviour support lady who worked with our son in mainstream is due to close because her services are not normally required once a child attends the type of provision he is at now.

The autism support team (education focussed) have accepted the referral but cannot offer support until April/May. 

CAMHS have been helpful and we saw a Psychiatrist within 6 weeks of this referral being accepted however they are not available to lead a TAC.

I crack. I know they hear my tears. I plead. “Who should I tell that we are falling apart?”

The laughable thing is today was a work day. These calls and emotional heart wrenching hours that have passed have done so whilst I’ve tried to work. I called in and said I needed to work from home and fortunately have a role where on occasions I can get away with this but it can’t go on. It’s not a solution. My work is suffering. My health is suffering. 

If we hadn’t have ‘coped’ so well,for so long, would help have stepped in? How bad does it have to get? How many people should you tell? 

In true mummagrizzlybear fashion.. I’m tired and bedtime is still to come. But as ever I’ll end on finding my 3 positives… some days it’s hard but it’s quite probably what keeps me going.

☆3 positives from the day☆

1) I have a flexible job and was able to recuperate at home

2) A friend called in just because she detected that I wasn’t 100% reminding me that I’m not alone

3) Bigger bruv  had a good school review report from teacher and littlest bruv actually kept it together all day despite the horrid start 

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