Should I try and get portage for ds or not?

[emkana]

He's 20 months old and has a type of dwarfism.

He doesn't speak, but is doing well otherwise. Has just learned to walk confidently, plays imaginatively, can point, makes eye contact. He can't do as many things as my dd's could at that age (apart from speaking also things like those wooden puzzles, of the top off my head), but I'm not sure if he would be a candidate for portage or whether he doesn't really have enough problems to qualify?

Portage has done wonders for my DS. He is 2 1/2 and started in Sept.

You can ask, they will come and do a fairly informal visit where they chat to you and play/observe your DS.

I think it depends on your local authority, some only provide portage for children with learning disabilities, some for any disability.

We qualify on the basis of DD's CP, tho she doesn't seem to have cognitive probs, and it's been great.

It continues until your child goes to nursery or school - so we've chosen a childminder for the days I work to make sure it carries on!

Hello! Been a long time...I haven't been on mumsnet for ages but thought I would drop in to visit the SN board and there you were!
DD (who is now 19 months and also doesn't speak) has portage and it's fantastic. In our area it's offered to any child with developmental delay. You can refer yourself or have one of your other therapists/drs do it.

Thanks everyone.

Arabica, how wonderful to "see" you! I have often thought of you and your dd. I hope you and your dd are well!

dd had visual difficulties. Gross and fine motor delay. Plus was non verbal at age 3. Portage was great as it showed up so much of what she could do. I think given dwarfism has specific challenges that you'd definitely get it. He sounds like he's doing great Emkana!

Yes it was great. did wonders for ds

Hi again Emkana. Yes, we are well although there are ongoing concerns with DD's various problem areas...but she is walking around and is going to nursery for 6hrs a week. She has her own worker, we are v lucky as they had some funding waiting for someone like DD to come along.
How are you all? Do you know why DS isn't speaking? DD has glue ear and moderate hearing loss, so she's having grommets. But my suspicion is her communication skills are very delayed anyway so I'm not expecting her to start saying anything.

Hi Arabica
I've just heard today that we're going to be joining a small weekly group session for children with speech delay, and I'm going to be sent the forms to apply for portage. I have no idea why ds isn't speaking, but posting on a board for parents of "little people", as it's called, it seems that speech delay is not uncommon for children with dwarfism. We shall have to say. His understanding is okay, but by far not as good as his sisters' were at this age. No idea where it's all going to go.

Have you got a clear-cut diagnosis for your dd? We still have no definite diagnosis and i don't know whether we'll ever get one.

I was thinking the other day of our plans to meet up one day when the nightmare of our pregnancies would be over...

Ds has some fluid in his ear too btw and mil hearing loss, but they reckon not bad enough to affect speech.

Do you think she will never speak?

shall have to see, not say

We don't have a diagnosis: geneticist looked at the chromosones in some detail and led us to believe that micro-array testing would reveal something but it came back as normal. Some DNA has been sent to Holland where there is a project researching chromosone 9. There's also a test ongoing for a metabolic disorder but no answers so far.
She has GDD, and the communication problems, but most worrying on a day-to-day basis is that she won't eat anything at all without a good deal of persuasion. She's on a high-calorie formula so she is getting enough nutrition but although she will put food items in her mouth to explore them, it's as if she doesn't know they're food and will nourish her--she just spits them out! Our dietitican is considering a food clinic to try and understand what the problem is. She'd see a SALT, dietitian and psychologist at the same time. I think it's a bit like the speech. She has the equipment to speak but she doesn't understand why she should use it.

We found Portage was wonderful. It did so much for DD2.

In our area the criteria is that the child must have delays in 2 developmental areas, eg fine and gross motor, or gross motor and speech, or speech and cognitive.

I would go for it, it is such fun and can be of huge benefit.

I'm only an ordinary teacher, no expert at all on special needs, but the children I see who have got help via portage get so much more out of the system. It means their needs are clearly highlighted to us at their point of entry and the relevant plans needed can be put in place. If you can get any sort of support then as a parent and a teacher I would grab it. Good luck!

Arabica, how do you feel about potentially never getting a diagnosis? After the quest for answers that was your (and my!) pregnancy?

I must say that I have really calmed down, I used to be permanently anxious and thinking about it all the time, but now it hardly seems to matter anymore.

Emkana, I change my mind all the time about whether a diagnosis would help. At the moment I am very worried about her lack of communication skills and her loss of appetite, and maybe if I had a diagnosis I could do more to help her thrive/alleviate my worries that she will never eat properly.

Yes I can understand that the eating must be worrying for you. I hope you find a way to solve this.

I think it will probably always be an up and down. I expect I will feel more affected once ds gets older and he becomes more aware of being different.

On the speaking I have sort of convinced myself that ds will be okay in the end, fingers very tightly crossed that I will be proved right.

Yes it would be great if someone was able to say, 'DD has X syndrome, which causes XX, and means she is likely to have delayed speech and eating problems--but 70% of babies with this diagnosis will grow out of the feeding problems and speak by the time they're X age'.