Looking for positives and support around ND/AN/development. Pls be kind..

[Bakergirlninteytwo]

Hello,
I have a beautiful 2 year old boy who is delayed in speech and social/emotional development but it’s continuing to make small steps of progress.
He goes to nursery 3 and a half days a week who are just amazing. He doesn’t use any speech at nursery but he does use words and the odd sentence at home. Some days he says a lot, some days barely anything. He’s just started engaging with the children around him which is wonderful to see as a few months ago he wouldn’t have taken any notice of them really. Although he still prefers his own company. He’s gone off toys and definitely pushes more for a screen which I’m really struggling to curb.
He struggles to communicate as he doesn’t point a lot and as I say is behind with speech which can make him upset and frustrated. He does quickly come around from it though. He’s current under SALT and nursery have referred him to portage, another programme I can’t remember and also have applied for 1:1 funding, all in the effort of getting him up to his milestones and giving him the best chance to thrive in time for starting school.
He stims a fair bit with lots of hand/arm flapping and holding things up to his face when exploring them. Mainly flapping when excited but this tends to be a lot as he’s such a happy/excitable boy. I’m pretty sure he’ll be referred for assessment after his 27 month check as it’s clear he’s ND. I do really struggle with it all mentally, I worry so much about the future knowing there’s a possibility his won’t be like everyone else’s. I feel like I’m going to really struggle being a SEN Mum and worrying about him and the future literally consumes me. My MH is at an all time low. I go days on end without taking care of myself properly, it’s causing problems in my relationship with my partner and older daughter who is 14.
does anyone have any supportive advice or positive experiences to share to help? I love my son with all my heart, despite his struggles with communication at the mo, he’s such a happy, laid back little guy. I just wish I could feel better and help him along more. He’s luckily getting all of the early intervention he can thanks to his nursery. Does this really help and make the difference/impact it’s said to?
sorry for the ramble, thanks for reading if you got this far!

Oh lovely, this is such a lot to cope with and you will will cope but first you need to help yourself. Please go to the GP. Feeling overwhelmed to the point of not washing sounds like you may have depression

Has the HV booked an appointment either you yet for the 2 year check?

@SleafordSods i definitely have depression and already on meds but im just hitting a wall with it at the moment. It’s like being forced into something you’re not ready to face. It’s really hard. I’ve got an appointment booked but it’s in a few weeks. DS 2 year check is 14th Nov. Not looking forward to it. 😭

I totally understand how you’re feeling

I’m glad that you’re already taking some medication. Are you seeing the GP regularly and can you access counselling?

Has the HV asked you to fill in both Ages & Stages before the appointment? Both the regular one and the social and emotional ages and stages?

@SleafordSodsthank you ❤️ I’ve struggled with my MH all my life but I’m finding this challenge particularly hard because it’s not one of those things are just going to get easier or better.

Yes, it came in the post today. He can do quite a bit of it in all fairness it’s just not that often so I’ll have to mark it as sometimes. Thing is, he seems to do so much of it just with me but not anywhere else so I’m worried I won’t be believed 🙈 either way, he clearly required additional support with his communication so all the things will still be put in place.

I wish I could just accept it and get on with without being so depressed about it.

And did she send you the social and emotional ages and stages that I linked to?

@SleafordSods yes she did, she’s going to look at it in a couple of weeks when I see her ☺️

I’m glad she’s sent you that one. Have you filled it in yet and if so, how does he score?

@SleafordSodsive filled it in but I’m not sure how to score it 😅
we did one with the HV just before he was 2 based on 24 months and I think she tallied the score at 47-50.

Ok so anything over 50 requires monitoring, which it sounds as though the HV is doing?

@SleafordSods ah okay, yes she is. Were very fortunate as were being supported very well.

You could ask her if there are any local groups for parents in a similar position to you. Often these can be a great source of information and support and sometimes even friendship.

You could also ask if there are any local Nurseries or Playgroups for DC who may have SN.

Also, head on over to the SN Chat and SN Children Section as they too can provide information and support

@SleafordSodsthank you 🤗

I did post in the SN chat. What people are commenting are all the steps to put in place and the things to access etc which is all lovely but I have those things either being put in place or discussed already. What im kind of looking for are experiences of people who have felt the way I have who perhaps have LO’s with AN or were delayed and had a journey to catch up. Whether they felt serious drops in their MH like I have and how they overcame it.

Or that they pictured their child’s life going a certain, negative way but that now their happy, building friendships, etc. Maybe that’s why groups are a good idea!

We this might be slightly outing. DC2 had serious speech delay, still has alexithymia but is an adult now. They go to college and work. They have a very small but very loyal band of friends and generally they’re happy.

Getting a diagnosis, AuDHD, has helped them understand themselves better and helped us understand what they need to not necessarily thrive but to cope.

Would I do things differently if I had my time again, undoubtedly. At the stage you’re at I would have pushed for those referrals avd not let my HV to keep up with the wait and see.

I would have applied for an ECHP earlier and I would have asked my HV for more support. There is so much available locally to us for DC with speech delay and/or ASD and I wasn’t aware of any of it at the time and I definitely would have gone for a Special School at least at High School Level.

How you feel is natural. It sounds as though you’re grieving the future for you and your DC that you’d imagined and you may need some help getting over that grief, but you will

@Bakergirlninteytwo hi. First of all sorry for my English as it’s not my first language.

I completely understand your feelings. I have been there 8 years ago when my son got diagnosis at age three with high functioning autism. I totally understand how you feel. I faced that when I was far away from my family and friends in another country. I was overwhelmed with sadness, worries, anger! But once you accept it, you will be fine. Everything will be in its place. I promise you. You got this! But it’s completely ok to grieve to cry. But please don’t let it consume you!
If one advice I can give you is don’t sacrifice all of you! your job your life! Try to engage in some social activities in any way! Don’t isolate yourself!

Also it’s wonderful that you got early intervention for your son but remember you will be the only one that at the end will help your son. Just try to engage him in some daily activities. Narrate everything you are doing for him. Reading books does wonder.

You got this mama. Just hang in there and know that you are not alone! ❤️

@Bakergirlninteytwo Also I want to add that my son is an amazing 11 year old boy. He was las year top student in the class with all high grades. When he was two or three he never played with children or made any contact. He had lots of struggles with communication. I started to talk with him a lot and teach him how to communicate. Once he was 4, he started playing with children making friends and asking me all the time to arrange a play date for him. He still loves having new friends and meeting them and doing activities together. Ofcourse he still has some struggles socially but many don’t even realize that he is ND. Not that it matters but I just want to say that he has made an amazing progress!
so please don’t worry. While you take care of yourself first, be also the first mentor of your son! A few years later you will see how far he has come!😘

@Yas1362 hello love, please don’t apologise, your English is absolutely perfect. You’re far better spoken that a lot of English people, I can assure you! ❤️

Thank you so much for sharing your story with me. It really made me smile. Your son sounded similar to mine now. Did he have a speech and social delay? It’s so overwhelming isn’t it. I try to do a few activities with him a day. I’ve found it best to read stories in the bath as that’s when he’s most engaged. Sometimes he’ll take part, other times he’ll wonder off. He’s not so keen on toys at the moment, he only likes a select few. He’s speech is coming on all the time though so I’m hopeful. Can I ask, what defines being high functioning? Google doesn’t have a lot of answers around it.

Your son sounds like a wonderful little boy, you must be so proud! Thank you again 🤗

Aw thanks for your kind words about my English!:))

My son had definitely language and social delay! He could say LOTS of words at age three and could repeat the scripts from his cartoons very accurately but he was not still calling us mama or papa! He was not able to answer questions even with yes or no! So his communication was actually non-existent!
once I knew about his problem I started just teaching him communication. So for example I took him to his father saying:” Hi papa what are you doing? Are you watching tv? What are you eating? Is that pasta?” Or I started to ask him questions and I knew he was not able to answer but I answered it for him. “Are you playing? Ja mama I’m playing” and gradually he learned how to answer questions. Also when he needed something I would ask him to say “mama can I have this?”
So all the time talking with him. In the country we were the only therapy I got was “FloorPlay”. You can google it or in YouTube or Instagram you can find helpful videos.
So a lady came every week for half an hour to teach me how to play and interact with my son. Before that my son was not actually able to play properly with his toys. He would just grab a toy and stimming. Like walking excitedly in circle and repeating the cartoon scripts or looking at the toy at different angles. Flapping his arms. But after doing FloorPlay he actually started to really play with his toys. He started to have preferences. Like he loved to play with robots, transformers and monsters. He started to really have pretend play. I remember he used different voices for each and did as if they talked and figured with each other. He could play so nicely. And it was so good to see!😊
FloorPlay also helped a lot with improving his social and communication skills. Because you do a lot of pretend play.
I read every day lots of book for him. But not only reading the texts but tried to more explain what was going on and what everyone in the story was doing. And asking him lots of questions. This helped him later to also start asking questions which in the beginning was zero.
When he was allowed to watch tv I didn’t leave him alone but was all the time engaged and describing for him everything in the tv. So he looked at me a lot during watching.

When he started school at 4,I started to arrange play dates for him. When a friend was here I was all the time engaged in their play because my son was not still able to make contact properly. After about 6 months from the school I could not believe how wonderfully he was playing with other boys and asking me to arrange a play date for him. He also made a best friend!😊🙏 I believe once their communication improves and they get more aware of the world around them social skills will also improve. My son speaks now three languages fluently and his communication skill is amazing. He likes to talk to people share his ideas and asking them questions. 😊

About high functioning autism I believe it’s considered as mild autisme with average or above average IQ.

Please let me know if I can be any help. You are always welcome to direct message me! And please take care of yourself!😘