What the hell do I do?

[redrighthand83]

I wish there was a 'SEN kids for dummies' guidance!

DD is 3. We have been referred for ASD diagnosis with NHS but apart from being a long list, I dont actually think that changes anything?

Wait list for NHS SALT so we have been paying private but I find we have mixed results.

I dont know what else I can do to help her. She is non-verbal outside the house and its now starting to cause issues with potty training. Nursery will only really work on guidance of a professional apparently - but who the hell is that?

What practical help and support can I get DD? Occupational therapy?

Basically...who are the people who can help DD3 learn to navigate the world......

Nursery should be providing support based on DD’s needs. If they need further advice on how to support her have they asked the Area SENCO for advice? They are also apply for early years inclusion funding if they need more money to support DD. Has an EHCNA been requested? An EHCP can provide further support DC wouldn’t otherwise get, including therapies such as SALT and OT without the need to sit on the normal waiting lists. IPSEA and SOSSEN are good places to start reading about EHCPs.

Are Portage involved (if you are in an area where Portage still support DC in nursery)?

Are you in receipt of DLA? If not, apply. The Cerebra guide is helpful when completing the form. If DD receives DLA the nursery can then apply for the Disability Access Fund.

Scope offer mentoring for parents of DC on the diagnosis pathway.

who are the people who can help DD3 learn to navigate the world

That would be you, and your dp if you have one. You read, investigate, identify, and start trying strategies to help and support your DD. You advocate for her at nursery and school.

Learn as much as you can about autism and follow autistic advocates on SM.

Yes, apply for an assessment, an EHCP, SALT & OT etc. but much of the work will be done by you at home.

Some general books to start with:

-How to raise a happy autistic child
-Autism & Asperger syndrome in children
-Hanen More than words (to help communication)
-An early start for your child with autism
-The out of sync child

Agree with @openupmyeagereyes - that reading list is a great start as the answer, fortunately or unfortunately, is you. Getting an EHCP is going to take ages, as will any support post-diagnosis (whenever that happens). For now consider that person to be you, and the best thing you can do is look at ways you can change your approach to parenting and communication to more effectively engage with DD, based on a better understanding of the way she experiences the world and prefers to learn. The Early Start book in particular I found very useful at this age.

Our DS's original nursery was obstructive too and we moved him to one that, while not overly competent in securing extra support (hence we're still waiting on an EHCP and an autism assessment as he is about to start reception), at least didn't stop me from finding, and paying for myself, a 1:1 to attend a few hours a day with DS (the previous nursery wouldn't entertain the idea). The speed of progress he made with the 1:1, plus all the stuff we've been doing with him at home, has been amazing to see.

By all means start work to get an EHCP, just know it will take awhile and shouldn't stop you from finding alternative routes in the meantime. 3 years old is such a prime age for helping steer their developmental course and changes you make at home can make a huge difference. This might sound daunting, but also know you have the power to make a huge difference!

Thank you.

Nursery have an IEP for her but seem hesitant to try things like a PEC board without being told to. They have told me based on experience that an EHCP is almost impossible to get until they are in the preschool room and have said unless an educational psychologist or speech therapist tells them to apply, they cant do it?

DD does not qualify for portage as the local authority needs three areas of development to be behind, and so far she only has one which is her speech.

Greta tip for DLA, thank you! Really kind of you to reply and helping me navigate the maze.

You are so right, thank you. Its hard, I am so worried about making a mistake.

Fantastic book resource list, thank you!

Can I ask how you found a 1:1?

I am so worried I am going to somehow make a mistake, and its difficult because she doesnt present with the 'typical' ASD traits - her SALT assessment at nursery for example said that you would never pick her out of a room as being ND - its the speech and processing that are her traits. I guess I am wishing for that qualified person to say 'Hey! This is what DD3 has. This is how we help her.'

You’re not going to make mistakes in the way that you worry you will, unless you try to parent her as if she is NT. You likely won’t get everything right, or at least you’ll try things that don’t work for her and have to try something else instead. It’s all a bit trial and error tbh.

If speech and communication are the primary concern then definitely get the Hanen book. It’s expensive but a hefty and cheaper than private SALT.

Ignore the nursery. Request an EHCNA yourself now. The nursery do not need to be told by an EP or SALT to request an EHCNA, and it is possible to an EHCP for younger DC. They should be providing support now, and seeking further support if they need more advice.

I totally understand what you mean, if you're still even unsure if you are actually looking at ASD or something else. In which case, reading those books is a fairly low cost, low commitment first step - that Early Start book for example was filled with activities that could be useful and simply good parenting with most children, and certainly would not do any harm to an NT child so you wouldn't be hurting anything by having a go.

For what it's worth, if it's something you are interested in, I found the 1:1 via childcare.co.uk under the Tutors section. This again is a long and winding story of trial and error and eventually eventually learning what support would help DS most as an individual - so may end up not being what your DD needs. But it's a case in point of, while you're sitting on ridiculous waiting lists, and getting knocked back with your requests for support (which seems to be a standard initial response you have to fight against) you can start doing your research and making things happen on your own and still achieve good things for your DD.

If your primary concern is speech and language, and your DD uses delayed echolalia, then there's a resource online called Meaningful Speech which I found hugely useful for DS. We haven't paid for a speech therapist to do sessions with him, but I did the training course myself and it's made me change the way I use language with him and (I think) really helped. His speech is still behind but massively improved in the last year and the rate of improvement has picked up too so I'm really optimistic about the improvements we'll see in the coming year ahead.