Hi everyone,
I’d love some advice from parents of children with autism please, feeling a bit lost, tearful, overwhelmed and clueless to be honest :-(
So, our beautiful DD is 2.6, and she’s displaying quite a few red flags for autism: severe speech and language delay, no joint attention, doesn’t respond to name, tiptoe walking, doesn’t stay still ever/ runs off, very sensory seeking, very limited eye contact, etc.
First question: I just wanted some advice on what to actually do/ check the course of action we've taken, as I’m feeling pretty overwhelmed. What we’ve done so far is this:
- When we first noticed the speech delay we decided to bring nursery forward by 7 months (she was with grandparents), in the hope that mixing with other children would do her good and even encourage speech. She’s now in 2 days a week and loves it
- We’ve explained our concerns to nursery and they’ve referred her (on our request) to the NHS SALT, but the waiting list is extremely long.
- I have spoken to both the HV and GP, and their view is very much “wait and see”, as she’s still so young, which I find really frustrating. You hear all these things about early intervention, so waiting just doesn’t sit right with me (or am I being impatient?!)
- Whilst we wait for NHS on the list, we’ve gone private for speech therapy. It just seemed too important to wait. The speech therapist agrees that lack of attention and listening is at the heart of her not speaking/ understanding, and has taught us some techniques for intensive interaction with her, to encourage eye contact/ turn taking/ back and forth, which she seems to be responding to so far, although it’s very early days.
Just wanting some advice on what to do next. Are we doing enough with the things above? I just feel so inexperienced with this and so clueless. Thinking I might phone the HV again and be more pushy and ask for a full assessment? Any advice? I really don’t want to let her down :-(
Second question: Any advice on how I (and her Dad) cope with all this? I don’t think I’m dealing with it very well, it was a massive shock for us when we realised how delayed she is. I absolutely adore her and I just want life to be easy for her. The thought that it might not be just breaks my heart. I’m so worried for her future as I just don’t know what to expect. I love her so much and find the fact that she doesn’t say Mummy and often doesn’t wait to interact with me utterly devastating (Although actually with her being sensory seeking she does love a good cuddle with her Mummy which is amazing). I fear that she may never talk, which is obviously a possibility. I find it extremely hard seeing friends with children who are the same age or even younger than her, who can talk, it devastates me. I know that sounds stupid. Any advice on how to come to terms with this myself, and how to view the situation a bit more positively? I’m normally a positive person, but not about this - I’m just crying about it all of the time. I am very lucky in that I have a very supportive partner, mother, MIL, and a few close friends and they’ve all been a massive help through this. And they all love her so much no matter what :-) I just feel like this is the toughest thing I’ve faced in my life and don’t think I’m dealing with it very well. But then I think, there are people in MUCH worse situations, and sometimes want to just slap myself and tell myself to snap out of it. Argh.
Any advice from people in a similar situation but further along would be much appreciated! Sorry for the rambley post! Thank you xxxx