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

You sound like a really lovely mum OP, your son’s lucky to have you 💐

He sounds so clever, OP! What a smart little guy to figure out his own way to communicate with you.

My DC is speech delayed. I like to remind myself that children are like popcorn kernels. They don’t all pop at the same time.

Your son sounds like he’s coming along brilliantly, you must be so proud of him. Little superstar!

Hi just wondering how your little one is getting on? My daughter is 2 and is exactly as you described your little one! I’m out of mind thinking will she ever understand? She’s literally in her own world. No understanding doesn’t play with her brother.. no affection. But like your little one she’s learnt to bring the things she wants opening to me. Will push my legs to take me where she wants. Get her shoes and stand by the baby gate.

You and he are both doing so well. I would agree with what a PP has suggested with objects of reference.

One thing that helped my eldest was a vertical list of photos of places we were going in order when we had to go out, always with home at the bottom. To start with I would show “now and next” to him at each stage, but when he had experienced it for a while, he used to sit in the pushchair (his safe space) and hold the list and it really helped with his anxiety as he knew what was coming and that we would go home.

And many kids with ASD and learning difficulties do not catch up and the gap is getting bigger. I had so many responses along the line of they all develop differently and get there in the end when I raised concerns about DD.

not sure how these responses are supposed to be helpful. they are wrong on so many levels and a speech delay is a very different diagnosis from autism and learning difficulties.

why cannot people simply acknowledge difficulties instead of coming out with these old chestnuts?

This. My son was deaf and I didn’t realise, as his hearing came and went. Speech was non existent at 2. At 3 he had some garbled signs and at 4 maybe a few odd words ‘poon’ for ‘spoon’ etc. At 4 he then went mute as he was so frustrated that no one not ever me could understand him. He has hyper mobility in his hands and feet and poor eye sight - all undiagnosed until 7-10 years old. He’s also autistic.

speech and spelling nightmare.

Then came a special school for a year and intensive speech therapy. And then he fell in love with audio books on CD. He was obsessed with Peter rabbit when he was 4 and would listen to the dvds and CDs over and over and that is what taught him to talk.

In year 1 he was 4 years behind, in year 2, he was 3 years behind in year 3, he was 2 years behind. In year 5- he os ahead in maths works at secondary school level, and he’s on track for all subjects and English with his peers.

He had to learn the spellings as it’s too hard for him to hear the different sounds. He learns 10 a weeks by rote method and with flash cards and memorises them or comes up with code ways 😱that even O struggle to understand eg numbers according to the letters and the position in the alphabet. Eg he will do 13-1-17 for a word and it’s jam or something? He just learnt them.
By the end of this year he will have learn all the year 5:6 spellings as he is determined to do it. Reading he struggles with no the pronunciation but the meaning of words so he learns those too - 3 or 4 a day on his own - so he learns what the words mean eg niggle, sensitive and he doesn’t accept a word unless he knows what it means.

I don’t mean this post to be a brag but I was desperate when he was 2 and sounded like a wild animal but when he showed an interest eg Peter rabbit -I got all those books And dvds and cds and spent time doing what he loved. Even though it drove me bonkers!!

when he was interested in locks - and keys I asked locally for spare locks and keys and encouraged him

when he was interested in insects I brought him books and magnifying glasses and went on huge long walks

he still loves all of the above and they are his go to happy place.

What I do remember was the tears and tantrums and meltdowns with communication he wanted to and couldn’t.

I don’t know if my story helps you as all autistic children / speech issues are different. But the key for me was finding something he wanted to learn / do. God bless Peter Rabbit!

My DD has autism though doesn't have learning difficulties. She was, however, also born quite prematurely and took a while to catch up with milestones, especially speaking. Just by chance, we signed up when she was wee for baby signing sessions (Sign and Sign) which we both enjoyed as an activity but my DD also learned quite a few signs which she liked to use at home before she could speak, and I am sure it defused frustration sometimes when she didn't have words to say what she wanted/needed/felt. I wonder if signing might be worth trying with your DS?

Now write a list of the things he can do OP. You know that your DS is unique and will have different abilities from some other children, so I'd try not to focus on comparisons with children without his challenges. Any comparisons you make should be in terms of distance travelled by your DS. He will be making progress in his own individual understanding of the world and in how he navigates it and that's what you need to look out for and value.