Frustration, swearing and tears….

The biggest myth of all – the support for disabled children is good.  Adequate is a massive overstatement. Naively us special needs parents, anticipate that the care will we need is there. At the start – still in shock, we navigate our way through, expecting that at some point it comes together. It hasn’t happened yet.

frust

For us, physio was the first non-hospital based support we accessed. Not rolling, not sitting, can’t even straighten her legs, we need help. From referral to the first appointment it took 3 months. Let me say that again – 3 months. How old was GG? 6 months old. We spent one third of her precious life waiting for that first appointment.

At last the day arrived, we were optimistic, nervous but hopeful of some support. A 3 month wait and a very hassled and over worked physio spent 30 minutes with our daughter. Let me say that again – 30 minutes. After a 3 month wait. When we will see you again? The desperation in our voices, greater than in the famous song. Perhaps a month, maybe 6 weeks. Keep doing the exercises I showed you. We are flummoxed, novices, lost in a scary world with no help. Turns out that every 6 weeks would have been a dream, 4 times a year has been the average. We spend on average £1500 per year on private physio. Not everyone in the same situation can.

Weight gain is poor, solid food cannot be managed – all her peers on baby led weaning, I frankly want to swear. I do. Appropriately, Speech and language is the referral made (SALT in SEN lingo), they can help with eating. We wait for 2 months. Nothing. We self refer to a private SALT and are seen weekly for 3 months before we get an appointment. We waited 5 months. Our baby was not gaining weight and we waited 5 months for the original appointment.

Next was the Occupational Therapist (OT). We needed stuff – equipment, standing frames, special seats, advice on car seats – the physio said we needed stuff but we had to go back to the consultant for a referral. The referral was made when GG was just 2 years old. The first OT we saw was when she started school at age 4.5 years. By this point we were no longer surprised. Disappointed yes, but not surprised. In the meantime, we got stuff – we bought it from SEN sites, we researched car seats and found one that worked. Alone again.

Alone The common thread to all of these referrals was the lack of diagnosis. Every therapist asking us ‘what is the medical condition?’ – we don’t know. We have been told we may never know but we struggle to believe this. We live in the UK, post 2010, surely we will find out one day soon? More than 5 years into our journey and still no answers. It turns out that no label = more hassle. Professionals do not know how to deal with those who remain undiagnosed. Even at times told,further support will be looked at once a diagnosis is confirmed. We are in limbo.

It is incredible that we have to ask and fight for these services. Incredible that we were not referred at the first point of contact. Incredible that one therapist cannot refer to another and we have to start from scratch. Incredible that we have to justify our need for the support because we do not fit into a box.

For context, I have described 3 out of 24 non-medical touchpoints that we have or will need to access in the future. This is the reality of how unco-ordinated and under funded services are.

Out of the Box

The frustration, swearing and tears have eventually resulted in a pro-active and positive effort to make a change. 6000 children are born each year with no diagnosis. Many many more, with a diagnosis, will still suffer from the lack of co-ordination. Please support #outofthebox Out of the Box

 

#undiagnosed should not be a barrier. Please support @swan_uk who provide a lifeline to those with no diagnosis.

*Each individual therapist has tried their hardest to help. This is no way reflects on the individuals but the system. More training on #undiagnosed is needed to avoid delays in services because of a lack of a label.

Swan UK have provided a lifeline to all we have faced in the past 2 years. We need this group and funding is at a critical junction with some big grants ending. My one request is to help support Swan UK to continue running and supporting the 1000 families already signed up, as well as reaching out to the 1000s of other families battling in isolation.

If you would like to donate to support the work of SWAN UK you can do so via the Just Giving page or our Virgin Money Giving page. You can also donate by texting SWAN11 £3 (or any amount up to £10) to 70070


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