Rant - Parenting autistic toddler

[objectivebread]

I have a 3.4 yr old who is suspected autistic and presents with extreme hyperactivity. He is a Gestalt language processor so he copies what you say and can verbally repeat things but he applies one meaning to a chunk of language.

He is developmentally about 27 months. He has restrictive eating, sleep issues. He is violent and randomly hits, kicks and bites me and his dad.

My family don't understand autism, they don't see the problems as he masks. He is not himself unless he feels safe.

His needs are obvious to me, it is so frustrating. A speech therapist told us he is at blank language level 2 emerging, so he cannot express himself and we need to use visual aids and implement a total communication approach... this is helpful but again my wider family think we have lost the plot.

The other day he attacked a baby at his childminders setting and attacked the other toddlers... he has an ISP and we are in the middle of the EHCP process
Going out is near impossible, and so is having people over. He attacks other children.

Professional services are barely helpful, I rang OT for help with walking refusal and they told me not to take him to shops and if we are out just count cars. He hits himself and goes into meltdown if he sees another child...sometimes adults!

He is 16kg, strong and willful, I cannot carry him forever. Wanna go shops? Screaming at other kids for looking at him. Swimming? He might attack a kid or we might get kicked out. Zoo? Waste of money as he will meltdown within 10 minutes of arriving and we will have to drive home.

My friends who have kids try to understand but are nervous with their kids around him, the birthday invites are drying up and we find ourselves isolated.

This is not the life I thought I would have.
To be clear me and my brother are diagnosed autistic and adhd, my son is very similar to my brother, and I grew up with that challenging behaviour.

To be clear we use all the fidgets, sensory interventions, professional recommendations.. I'm just exhausted. I developed fibromyalgia and chronic severe migraines a year ago, my husband and I just don't do anything, we are scared to break routine
I think I'm just ranting. These past 2 years have been the hardest 2 years of my life.

Do you have a buggy/SN buggy/wheelchair? If not, I would look at getting one.

However, you may need to reconsider where you are taking DS. Going to the shops can be extremely overwhelming. I have much older DC and we still avoid shopping. I would look at online deliveries. Similarly, I have one DC who doesn’t cope with things like swimming in a public session. He has a private session as part of his EHCP. He wouldn’t cope with days out to attractions such as the zoo, either. Have you looked at carer tickets? This would help reduce the financial hit if you can’t stay long.

Where are you in the EHCP process? Have you had social care assessments?

They don’t work for all DC but have you looked at SEN groups?

Agree with everything in PP ‘s excellent response

You must be exhausted and I know how challenging autistic DC can be at that age. The buggy in particular is a great tip.

Our DD was in a large Silver cross buggy until around the age of 5 as she would run off or have meltdowns usually due to sensory overload or special interests. We also used reins/ backpack reins.
Shops were a huge no and even as an adult she’d get too cold in a supermarket. I started online food shops when she was 3.

Would he enjoy open spaces where there aren’t many people or other children? Do you have a garden with a swing or trampoline?

How is your brother now and does this give you any hope for the future? It’s a shame that your family have so little understanding especially as you and your sibling have a diagnosis.

Have you been offered EarlyBird or similar Programme post diagnosis? A good way to meet other parents who understand. You could also share the information with family.

Has he had a sensory assessment from a specialist OT? Not all OTs are qualified.
Look at the book The Out of Synch child has Fun for ideas of things to do at home.

Yeah, we are now looking at a mobiquip
Very true... my husband is all about pushing him out of his comfort zone
(I have reservations about this as our son can get violent with other kids.)
I think DH is starting to get it now

We are in needs assessment, we have a private SALT report, NHS SALT just assessed and granted ongoing therapy intervention, waiting for the educational psychologist appointment, we have OT report with 1:1 recommendations for education setting but no sensory diet so I found that odd. All going well so far, was a bit of a battle trying to get his assessment through mediation but got it in the end. Social care have been asked to comment but not sure what they can offer?

I take him to a support group when he is out of daycare in the holidays but he can get a bit overwhelmed when other children stim around him. I go to SEN coffee mornings sometimes

Will look at carer tickets thank you x

I would go back to the LA and OT and ask them to cover the sensory side of things. If that OT can’t, the LA should look to secure a different OT to assess.

The role of social care in families with disabled DC is varied and often misunderstood. I could be here all day explaining all the different possibilities, but instead I will link to Contact’s booklet here which explains.

As well as the Out of Sync Child book mentioned by pp, have a look at this booklet and some of the Occuplaytional Therapist’s resources.

If you think DS may try to tip over the SN buggy to escape, the mobiquip XL isn’t the most stable. You might want to consider some other options too. If you can’t afford the more expensive options, you could look at a charity grant.

It is worth DH remembering throwing DS in at the deep end doesn’t build ‘resilience’. That’s not to say don’t do anything and over time you will learn when you can push and when you can back off.