The Weight of waiting for support.

I’m getting truly sick and tired of the way things work for sen children/adults when it comes to accessing services. These can be medical, emotional or educational. What do you do when your child needs help in these circumstances? Head to the GP? Talk to their teacher? Yeah not so much for us.

Suppose you have two children, Child 1 is 14 years old and child 2 is 6.

Suppose child 1 was diagnosed as autistic last month. Suppose that diagnosis has sent the child into numerous shutdowns (even though he knew it was probably coming) and sometimes terror at the thought of going to school and facing another day of noisy classmates and crowded corridors.

Suppose Child 1’s brother Child 2 was diagnosed as autistic 4 years ago and their mum knows the path she needs to take to get her eldest the support he needs so clearly. Because suppose they left that diagnosis meeting with no information on where to go from here or what help should be available for Child 1.

Imagine she didn’t know there are services out there designed to support her and her children because no one told her.

Imagine the wait now for those services to begin, which would have been much longer still had she not known she needed referrals. Again, because she left the meeting with no forward information.

Now imagine Child 1 and 2 both have significant needs that need to be met.

Imagine your child is hurting but the GP cant help, you cant go to A & E about it because its “mental health”

Imagine child 1 hurts himself, a lot, and you’ve done every course, every technique to get him to stop but nothing has worked. We in my area and most others I’d assume have to refer to camhs: Children, Adolescent, Mental, Health, Service, also LDCAMHS (learning disability camhs.)

Imagine every professional you’ve ever met with telling you “you are his mother, you know him best” then proceeding to do what they think is best anyway.

Imagine you only have one path open to you and you can only get a voicemail and you end up waiting days hoping that professional will answer you “yes, you are right; let’s do this your way now”

Imagine there are services outside your area that you want a referral to but cant get because “mental health”- their words stays within the county. Imagine there is one facility right round the corner within your county but they are for learning disabilities and autism is not a learning disability.

Imagine the frustration that parent feels. The utter helplessness, and the mind boggling fact that if Child 2 cracks his skull open, only then would she have the option to choose where to send him, even out of area if she deems it the best place for him.

It doesn’t bear thinking about really, but its what we face every single day. On little to no sleep sometimes, we dance to the tune others sing because we have to. There is no A to B, more like A to C to F back to B. Don’t even get me started on education!! wow!!

The pressure we often feel can be paralysing, the weight on our shoulders should is heavy. But we can not stop, because if we do, no one will check if we are ok, or if we need another appt for our children. I often feel like my children are just a number on a list.

Imagine struggling against the tide every day. Going the wrong way down a one way street. That is how it often feels to a special needs parent. Shouldn’t there be another way? A better way? Don’t our children deserve more?

I don’t expect every one to care for them like I do, but it would be nice if for once things were made a little clearer; easier.

Now imagine why we do it, what would you do to get your children the support they need?

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s