Development delay - could cry with frustration

[hanbee]

Dear All,

We've finally been told DS1 has development delay (not a diagnosis as such) he is 25 months. He sat independantly (although wobbly) at 8 months, crawled at 12 months, cruised at 14 months and only started taking steps unsupported at about 22 months, at 25 months he is walking short distances alone and is waiting for piedro boots which will hopefully give him more confidence and improve his muscle tone.

He has been assessed 3 times by a paediatrician using the schedule for growing skills. Until the last appointment she has told us he is developing on the late side of normal but this now appears to have change and its left me wondering what the future holds for him.

He has about 6-8 words so has a speech delay too. He refused to do the jigsaw, stack blocks or scribble so his manipulative and cognitive skills are being rated at a 15 month old level. However, at home he will put balls and cars down the helter skelter and carefully unstack blocks I've stacked so I wonder how much of this is just his personality.

Does anyone have any experience of something similar? I would love to hear from anyone who has an older child who might have been similar aged 2. I'm just so worried about him, he's a happy, smiley, funny character and I just want to see that grow and develop. I'm now frightened about whether this development will progress at all, will he catch up or will things get worse.

Wish I had a magic wand....

Hi Hanbee

My ds who is nearly five was similar at that age although he walked earlier. He can now ride a scooter, talk about his interests, do a two piece jigsaw, knows all his letters, shapes and colours and after a term at a mainstream school can recognise a few letters so he has come on loads and is a lovely little chap. but of course the all other kids have come on further and faster so the gap has actually grown.

I like the book "fostering intellectual and emotional growth in the child with special needs" by stanley greenspan becuase it is so practical and positive. Much better to have something to do while the experts faff and put you on waiting lists.

If you are in England and haven't already heard from them then do self refer to the local Portage service as many people on here rave about them.

Could have been my DS1 at that age! He is now dx as dyspraxic - but initial paediatrician thoughts were developmental delay. Fast forward 6 years and he is doing well at school and plans to be a dr when he's older.
His writing is poor, gait is wonky, and a shed load of quirks - but they are his quirks that make him who he is and i love him for it.
Early intervention and working with various professionals will give the best outcomes.

Hanbee, my DS is very, very similar to yours (he's 24 months), late reaching all gross motor milestones (still can't walk), speech delay and assessed cognitively at 15-18 months. Like your son, he couldn't do the jigsaw or build the tower. However, at home, he stacks cups and is able to put coins in his fisher price piggy bank, so again, I think personality can play a part.
I share the same concerns as you, particularly the worry about cognitive progression.

However, I am optimistic as a very good friend of mine's DS was the same at two - and three. He didn't speak at all until 3.4 and was unable to do the stacking tests etc at 2. Infact, he didn't seem able to understand anything at two. Now he is 6 and doing very well. To talk to him, you would never know he had had a speech delay, and he has caught up in most other areas too. He still has some help at school, but he is not far behind his peers now. If ever I feel down, I think of the progress he has made and it makes me feel more positve.

When I saw the paediatrician, I asked her whether she thought DS could catch up and she told me she didn't like to make predictions any more after a child she considered to have severe delays as a toddler / young child went on to do extremely well at school and went off to uni.
I guess the best we can do is access all the help we can for our Ds's.

Thanks everyone for such positive replies, I will remember the things you have said in the middle of the night when feeding DS2, this is always the time I start to have dark thoughts!

It's good to know that some degree of progress seems more likely than not based on your experiences. I know that I should just enjoy the progress he is making but this so hard to too when your constantly badgering professionals to stop waiting around and actually DO something. I find it upsetting to see younger children at the toddler groups we go to progressing past my son, I've considered not going to save myself the upset but I know that this would be detrimental for him and me - we both need to socialise!

Zen1, unlike your son mine won't stack rings. I know he can do it as I've seen him put them on the stacker but he'll do one and then go off to do something else - he's just not interested. If it doesn't involve action, movement and noise it's not for him. The only exception being reading books, which he loves.

I'm just trying to take one day at a time and stop trying to predict the future but it's so hard.

Thanks again

Hi there, I just wanted to post as I fully understand all of your thoughts and feelings. I was the same about going to toddler groups etc. I actually started going to my local opportunity playgroup, there's usually one in every town. I also put him into private nursery for a couple of mornings so that he was getting plenty of socialization. These were both things my hv recommened and they proved beneficial for both of us. Do you see your hv? This is one of their key roles, I just thought they weighed babies lol.

Just wanted to say ds sounds just like yours. Only said 'hello' (occasionally) by 2. Started talking just before 3, did have slight glue ear. At developmental test would not do anything, so had to come again, no scribbing, building blocks, recognising animals etc, but could do jigsaws (but did not ask that) so at 31months he was classed a year delay (more so language). Did not walk till 20 months (his hypermobile), pierdo boots made a hugh difference. Would look at books for hours.

Role on his just turned 5 and at school and not struggling with work. Has a dx of HFA. But doing well, slight lang delay, but understands everthing (well that he agrees with). Still hates drawing, but can.

No pierdo boots now, we did gym, swimming, martial arts which strengthened his ankles and helps his general floppiness. Portage was the break through, for 9 months when he was 3 years old, he pretty much caught up (an amazing teacher). Also a fab nursery that helped with his socialisation, bit of 1:1. I would never have predicted such progress, but early intervention is the key.

Hi - sorry I've nothing useful to add. We're in the same boat my ds is 23 months with gdd - paed puts him about a year behind in all areas and we're still waiting for a diagnosis.

Just wanted to say thanks to crunchie for the book recommendation I've been searching for one for ages. The OT wasn't forthcoming with any ideas and all the ones I'd seen seem more aimed at the professionals I also ordered - small steps forward - games and activities for children with special needs by Sarah Newman!

Anyway good luck hanbee - sorry for hijacking your post!!

Thanks again all. I find it amazing that there are so many of you with similar experiences, all boys too. Thank heavens for Mumsnet as I was feeling q isolated.

1980Sport, you're in no way hijacking , it helps me no end to know I'm not alone - we all need to stick together!

Hi!

I'm another one - DS is nearly 2, and has only a handful of words which have only come in the last 4 weeks really.
He walked at 20 months, and has been diagnosed with hypertonia (I think this is right anyway - loose limbs). He's very unsteady still.
Saw specialist yesterday who was really pleased with the progress he's making (he has been referred to SALT and Portage, w're awaiting the appointments for these).
It is very worrying, but hang in there, we're all in similar siutations here which has really helped me.