Any other Mums going through getting their child assessed?

[DropYourSword]

Hi, I guess I really just want a space to talk to other Mums going through a similar thing to me.
My DS is 5 and has been really struggling at school. It's all kind of "exploded" open over the past few weeks and I just feel very overwhelmed.
He's had a speech pathologist assessment that shows moderate issues with both receptive and expressive language. He's been to see a psychologist who thinks he's very likely to have ASD and ADHD and is starting the assessment process. We've been referred to an OT and a paediatrician. There's also potentially a learning disorder.

I just feel upset and overwhelmed. I know he's always been a "full on" kid but I have clearly been in denial of just how much. We've been naturally compensating at home for things he struggles with, without realising it wasn't necessarily typical for a child his age.
Is anyone else going through similar. I love my boy so so much and I guess right now I just feel so stupid I've completely missed this, and worried about his future.

Don’t feel stupid. Your frame of reference of ‘normal’ is your own kid!

You are where I was about 18 months ago. The thing about neuro-diversity is the main thing the professionals look for in the early years is speech. If your kid is verbal (like mine), they often slip through the net until school when more complex demands on them show up their challenges.

My tips would be;

Go see the professionals. They’re there to help.

Find a crew - local SEN groups, facebook, ask your school SENCO etc. There will be parents who are ahead of you in the journey and can help with stuff like schools. And also can be there to drink tea / wine with and understand.

Know it’s not your fault. Neurodiversity is genetic and not because of wrong parenting or anything you have done. If your child does have ASD they may require parenting in a certain way which breaks a lot of the parenting mantras others swear by. Ignore them, those mantras work for neurotypical kids.

ASD and ADHD don’t mean anything in terms of long term outcomes. It’s pretty accepted most famous ‘geniuses’ like Leonardo Da Vinci or even Steve Jobs were on the spectrum. Neurodiverse people are in all walks of life.

And also 5 is young. I know kids who seemed really on the spectrum at 5 that were totally ‘normal’ by 7. Not the case for my kid who has become more pronounced in his diversity as he’s got older but, you never can tell.

Good luck xx

Thank you! You're absolutely right - my frame of reference for normal has always only been my own kid. And I know that logically and it's the advice I would give to a friend! It's easier to say than to accept sometimes!

It also really helped me to hear that verbal kids can slip through a little longer. It's exactly what happened to me - he has just started grade 1 and the step up is just too much for him to cope with all of a sudden. I can understand or accept a little more how I (and the school I guess) could have missed identifying this a little earlier.

I am going to look for a parent group in my area. I think it will really help to speak to other people who have been where I am now. And then at some point in the future I could be a help to a new and confused parent.

I really appreciate you taking the time to respond @NinaManiana - very best of luck to you and your kid too!

Hi, can I join you? I have an 11-year-old daughter who is just going through her assessment. Yesterday she had her first appointment, only one parent could go with her and we decided her dad would - I'm very upset by the whole thing and knew I'd cry.

Does anybody know how long it'll take from this first appointment to a diagnosis? I know it'll depend on where you are in the country, but a rough idea would help.

I'm just so overwhelmed. All sorts of thoughts are going through my mind at the moment. I can definitely do with finding a community, how do you go about finding a parent group?

My daughter is relatively fine at school. She's not doing too well academically but she's well-behaved there - unilke at home! She struggles to make friends though, which breaks my heart. She's also very disorganised and I often wonder how she's going to cope as an adult.

It's so hard.

Hi @TR888 - everything you've said there describes exactly what I'm going through too! Just a lot of confusion and needing answers, without really knowing what questions to ask.
I'm really glad your girl is doing okay at school, that's where my son absolutely struggles. As and when I find anything that may answer our questions I'll let you know.

We need to remember to take one step at a time and not worry too much about their future. Which is bloody hard.

My son got his diagnosis on the day of his assessment, not sure why the delay. Maybe call them and ask about timings?

As for a parent group…

Facebook? Try looking for terms including ‘SEN’ and the name of your area. I bet you’d be surprised.

Also try looking for SEN activities in your area. Just google. Even if your 11 year old thinks everything sounds lame, you could go!

If you call the national autistic society they should also have tips for groups etc.

I have made fantastic solid pals through SEN groups. Other parents to drink wine with, share horror stories with, do playdates with, it has kept me sane through all the rejection and isolation and exhaustion of SEN parenting. I really hope you find the same. It took me about a year x

Hi hun I agree with the above comments.

What area are you in? Im in Yorkshire and have a groupon fb West Yorkshire Autism and Neurodiverse Support
On Facebook. Its not specific to this area I have a few members from further away. Feel free to join.

My son is autistic and so am I I hope all goes ok for you.

Yes, just handed the forms for assessment into GP (primary aged dc) and I really understand that feeling of being overwhelmed. I do feel a sense of relief now the process is underway (I have dithered about for a while - probably in denial) and I feel like I've been limping along for a while. Husband doesn't have the same concerns or worries about dc which feels even more isolating.

There is a local group set up in this region. I think I might pop along to it.

So we went to see our psychologist today. She said she's absolutely certain he has AAD and ADHD and just needs to complete the proper assessment as a formality.
His speech pathologist has confirmed he has DLD - developmental language disorder.

I'm still all over the place at the moment. He is exactly the same little boy I love so ridiculously fiercely but I'm just so concerned about what the future holds for him.

Hi, I'd like to follow your journey as I'm just going through the same. Dd6 has just been accepted for an asd assessment and is on the waiting list. Looking likely to be around a year. I'm also new to all of it, I had a shy girl and then she started school and she's found it really hard. School have picked up on traits and she has anxiety, social and communication struggles. She's a bright girl, early to do everything and hit every milestone etc
I read a comment 98% of children passed at panel to go forward for an assessment come out with a diagnosis.