Just realising how developmentally delayed my toddler is

[Worriedabouthisfuture]

Please be kind. My DS is my absolute world, and I wouldn’t change him for the world. As long as he is happy, that is what matters to me. i don’t want to seem like I’m being an awful mum.

DS, 3, is autistic and has learning disabilities. We see portage every week at the moment to help him with his development.

I’ve always just seen my DS as my DS. Whilst im aware he is not reaching the same milestones as other children his age it’s never really hit me like it has tonight when I came across an article of what three year olds should be able to do by now.

My DS can’t:

• talk, he is non-verbal but makes lots of noises (though very few variations)
• cannot count or write
• cannot understand simple instructions (I am unsure if he understands what we are saying)
• concentrate on things for longer than a couple of minutes
• feed himself with a spoon/fork
• do imaginative play
• do puzzles
• copy actions
• work out toys by himself
• understand words like ‘no’ or ‘thank you’
• Wash himself
• Point to things
• play with other children

Whilst we are trying signs, picture cards and talking in very simple phrases constantly, DS tends to communicate us by putting our hands on what he wants, leading us to things he wants, if he wants to go outside he brings us his shoes, he isn’t potty trained yet but understands when it’s a nappy change time as he will lay down to be changed. If he doesn’t want something he puts it back or drops it on the floor (this can mean trying lots until we get it right!). I think it’s super clever that he’s learned how to do all of this because he’s had to find his own ways to communicate and it is frustrating for him because he wants to verbally communicate, which leads to meltdowns.

Reading so many ‘milestones’ that my DS hasn’t met by the age of three has just really hit home tonight.

i don’t know what im asking for here I just need to get it out because I don’t want people to think I’m complaining. I guess it’s just made me worry for his future

Couldn’t not reply to this! My son isn’t autistic but was speech delayed (he is also 3) and I recall the sleepless nights I’d spend worrying about him and his development and that was without the extra challenges your son has. I’ve worked with autistic children for years, many could be described just like your son when they were 3. However many do ‘catch up’ as they grow at their own pace. For example one child was non verbal until age 5, however by age 10 you’d never have known! However some children remain non verbal but just think about how amazing and clever your son is to have learnt all those other ways of communicating! That’s really special.

Ive no doubt that you are going to support your son in any way possible with his development, however just because he can’t do the things you describe now, doesn’t mean that he won’t be able to in the future at his own pace. Far too much pressure is put on children and parents to conform to ‘milestones’ and ‘expectations’ however each child is different with their own challenges and imo a child is thriving if they have a loving supportive home which even just from you worrying about these things and posting this on here it sounds like your son has <3

Bless him, please don't let it get you down. He sounds like he is coming along brilliantly in finding new ways to communicate. I know of many children who were none verbal who caught up. They might always need some level of support but with a loving home environment and the right support they can come such a long way. Just focus on ways of supporting your child (which it sounds like you are doing amazingly!) And rip up the milestone list for now!

I was reading this and thinking how clever your ds is for finding ways to express himself. An autistic child I know was similar, think he had some early speech therapy intervention iirc, and is now able to communicate verbally and fluently.

These lists that focus on what your DS can't do are hard to read. But when you think about the challenges he has then really appreciate how far he has come, that baby who couldn't express himself is now able to do so much.
There are a few children in my life with degrees of disability, some through work and some in my personal life.
Some don't communicate with words but they all communicate, especially when loving parents and others try to understand them. Don't get me wrong, there might be times when you're frustrated trying to understand, and sad seeing how life is difficult for them, but your DS is your perfect boy.

He is still very young. My son has dyspraxi a and didn't talk until he was 4, now he doesn't stop talking. Your son is still able to communicate in other ways. Some children just take their own time, this doesn't mean they are not intelligent or able to progress in the future.

You are so aware of what your DS can do, and understanding his frustrations is such a huge part of the battle. I have worked with toddlers with a similar level of need before and it is relentless, but there will be people in his life who love him for who he is and he will be making progress, just in smaller steps than his peers.

I appreciate that your post isn’t asking for advice per se, but have you heard of objects of reference? It sounds like your DS could use them for communication- there is a good guide here. Just use one or two to begin with. They work like picture cue cards but in a more accessible, multi-sensory way.

Don’t look at developmental milestones. He will develop differently but will develop… and how lucky is he to have you!

I couldn’t read and run as like a PP I also had msny, many sleepless nights over my DS’s development.

Speaking as a mum of a child who hit ONE milestone in 3 years and as a teacher, these are my personal thoughts.

All children develop in their own time. My son didn’t talk until 2.5 and was still on nappies at 3.5. Now, 4.5 he can barely hold a pencil. However he’s in nursery, happy, sociable and genuinely loves life.

Communication is more important that talking.

The realisation that your DS’s development isn’t following the national average is crushing but you honestly won’t focus on it for long. It doesn’t define your child.

Stop reading milestones. It makes you feel shit and doesn’t help anything.

There is support out there but you’ve got to find it.

Children who develop typically don’t always have it ‘easier’ and vice versa so much depends on parental/ school/peer support.

Hardest one ever- don’t compare. Look at your child in their journey. What can THEY do now that they couldn’t before, what’s their progress and what’s going to be next. Once I started doing this I felt unbelievably better but it’s hard to get there.

Talk to people and when you find someone who really understands ask all the questions you need to.

Get the best nursery/early years provider you can. This can make a big difference.

Know you are doing an incredible job and recognise that you are the most important person in DS’s life. ❤️

Hi, OP -

I also could not read and run. This is one of the most loving and moving posts I have ever read. I wish I had a solution or some advice for you. But all I can think of is how very lucky your DS is to have such a wonderful mum.

I wish I had some answers or advice for you. Do you have support?

Hiya @Worriedabouthisfuture

He sounds wonderful!

My autistic (I've 2 but one much more severe) DS was very similar, once he went to an SEN school he's come on leaps and bounds.
At one point at around 4 (at mainstream) he could only be in nursery for about 25 minutes a day because he was terrorising all the kids and staff.
He also didn't talk much except the occasional "no/fuck/brothers names"

Now not only has his swearing progressed leaps and bounds but also his sentencing and counting and even word recognition.

I thought he'd never be fully verbal or potty trained, he now likes to tell me about his "big massive poops" and it fills me with joy 😂

Don't get caught up with milestones, he'll do what he's capable of and when he's ready.

He sounds fabulous and you sound a lovely mum!

Have you got the EHCP process rolling now so he can go straight into a school that will be able to really help him and you? You can apply yourself if you don't yet have a professional involved who is willing to do it.

Your son sounds amazing, and so do you. One thing that came to mind is whether you’ve had his hearing checked? My reason for asking is that my DD (who is developmentally delayed and possible ASD) struggled with speech which most folk decided was part of her delay however after much argument it was found she had significant hearing loss in both ears. Apparently it’s fairly common for kids with additional needs to have undiscovered hearing issues, it may be worth checking if you haven’t already.

I have an almost two year old who is very similar to how you’ve described your child. We also see portage but on a monthly basis. I understand exactly how you feel. I also have an older child who was exactly the same. He is now almost six and has managed to ‘catch up’ somewhat. I’m not going to lie and say that everything works out perfectly because in all honesty his first year of school was horrendous and we’ve had to keep him behind a year, but he’s doing so much better now and is making great strides. Things are certainly more positive than they were even this time last year. You are doing everything you can. The main lesson I’ve learnt from parenting a child with special needs is that it’s an ever changing picture. As your child grows, their needs and abilities change and your ability to respond to this adapts alongside them. At 3, your child is still very very young and will seem even more so with a developmental delay but this will even out eventually and the delay will seem less apparent as he gets older. When my eldest was younger, I felt stressed and worried that he’d be disadvantaged. However, now my youngest is experiencing similar, I realise that it’s not actually a huge deal and it’s incredibly rewarding to parent a child who has additional needs.

It's great that you are aware that your child needs extra support especially at a young age, a lot of parents go into denial until the children are a lot older. If you go to your GP and ask to be referred to a paediatrician. They will be able to start to put things in place for other professionals to get involved. They will be your starting point in helping your child get their EHCP, which is their education health care plan. This will give them the setting and support they need at school, whether it will be main stream or specialist.
Parents wanting support and help is the biggest step, it's hard to know where your child should be developmentally if you don't work with children yourself so it's great that you know this early they need extra support.

It does hit you like a ton of bricks sometimes.
My DD is 12 and I have had to accept that she will never, never grow up.

Never talk, never join in family gatherings (autistic, too much going on), never go on holiday again, never live independently.

She is a lovely lively soul, and has a wonderful time at school where she joins in little trips and such, but then she needs all her time at home as down time.

The worst is the lack of sleep for me. This last week she has slept maybe 2-3 hours each night. I feel like the walking dead.

I hope you have plenty of support for your son and yourselves. He is only 3, so may well become more verbal and learn independent skills. But if not, accept all help you can get. It is so important to get that rest and time off to recharge the batteries.

I understand how you feel OP. My DD age 3 is awaiting assessment and displays a lot of what you have mentioned on your list. The only difference is she is verbal. She is almost 4 now but around a year ago I had the stark realisation you have described and it felt like my world fell apart, there were many tears sleepiness nights and worry. Things are a lot better now, I've accepted what the future will look like and learned to understand
her and now celebrate a lot of little gains she has made along the way. She is now able to communicate and understand so much more just in a year by implementing strategies speech therapy have put in place. An excellent school based preschool has also helped with this. Potty training took around a year to complete (and almost broke me!) My entire house smells of wee but we got there in the end. Food is our next uphill battle as she has such a limited diet and about to start school full time. What really helped me with acceptance and understanding and getting to this point was social media. There are lots of lovely instagram pages with children at the same age and developmental stage as ours and they are such a help in lifting spirits. If you are on instagram have a look - a few are sprinkleofspectrum, happyhandswithhallie, roccohydrowarrior. Hang in there keep loving supporting and try not to think too far into the future

Thats very hard to come to terms with OP, but you know its ok to complain a bit too and feel sorry for yourself sometimes. You can still love your child to bits but wish things were a bit different, no one could judge you for that. No words of wisdom really just to say he is only 3 and you have no idea the severity of his needs yet, anything could happen. My boy (now teenager) was not too different at 3 and it was like someone flicked a switch about 3 1/2 and every day was like a new miracle, by 5 1/2 was in mainstream school with supports and never shut up chatting and for the most part the autism became invisible. I know thats not common but just saying its still possible. Even with more profound cases its amazing with supports how far along a child with autism can come. You are obviously doing a great job with him and he will thrive from the love and support you give him.

I'll leave the specifics to other more knowledgeable posters, but I read your post and thought your son sounds awesome and a bright little spark x

My 3 year old cant do any of these thjbgs either. Try to focus on how he is developing no matter how slow it is.

My son is the same now, nearly 6 and still completely non verbal, but is learning so much all the time and his understanding is improving. Stop looking at where he should be and meet him where he is. Get him with people who understand autism if possible- my child is at an autism school and it has helped him enormously

Also can’t read and run, my DS is being assessed for ASD and was delayed walking and talking. I remember how deflated I felt after he failed the twelve month check. The important thing is to focus on how he is developing and all the positives. Massive hugs, it’s so hard sometimes!

Sending a virtual hug - was in a similar position a few years ago. It’s lovely he can show and take you to what he needs. We found an amazing special school via portage and see progress every day.

Whilst we are trying signs, picture cards and talking in very simple phrases constantly, DS tends to communicate us by putting our hands on what he wants, leading us to things he wants, if he wants to go outside he brings us his shoes, he isn’t potty trained yet but understands when it’s a nappy change time as he will lay down to be changed. If he doesn’t want something he puts it back or drops it on the floor (this can mean trying lots until we get it right!).

Sounds just like my thirteen-year-old.

Over the last couple of years, we have come to terms with the fact that he will not have the customary future of university, job, house, his own family. Instead we are looking at further college and supported living. You do become resigned to it, the pain of comparison with other children lessens as your child progresses through SEN school. You start to celebrate the little wins (our son can now put on socks, not to command but when he chooses). And you realise that they don't actually know any different, they have no idea of societal norms, and they are HAPPY with their life. Your child won't worry as you do. So try to stay in the happy zone with them. ((hugs))

I haven’t read the other replies. Count, read and play with others are not developmental norms for this age. Stop reading what your child ‘should’ be doing and focus on meeting them where they are.

Both my DSs are autistic and have learning disabilities. I used to cry every parents' evening at nursery because they were so 'behind' developmentally. I am more hardened to it now.

They will make progress though it may not feel like it sometimes. My DS7 has just started saying a few words in the last few months.