DS referred for assessment as has gross motor, fine motor and speech delay. What can we expect

[Ouchdownthere]

DS (9 months) has just been referred for his developmental and suspect cognitive delay. Have been worried he has not been hitting his milestones and the difference in his peer ability is becoming more and more startling. He is a really happy happy little boy, he's just not making the progress he should.

Am relieved the delay has been confirmed but so worried about the road ahead. We just want to do what is best for DS and don't want to get lost or delayed (ironic) in the system.

We are incredibly fortunate to be able to be seeing a paed very quickly but has anyone else with this experience got any outside agencies / support networks that we could contact? It will be an 11 month wait for a child assessment team appointment but each day we wait now is another day that he falls farther behind and I suspect will be harder for him to make good progress.

Have people found the strength to continue going to baby groups? I find it so painful to see him so clearly behind his peers as well as his lack of interest in what is actually going on but I know any kind of stimulus is just what he needs. Aaaaagh.

Sorry it's a bit of a ramble, am just a bag of anxiousness, and don't know what to do next.

Hello and welcome to the board. I'm sorry you're going through such a worrying time, and that you are on the end of such a lengthy waiting list.

In terms of the baby groups, unless he seems to enjoy them, then don't feel bad about not going, there are so many other things - swimming/park/zoo you can do where he will see other people.

In terms of support locally - unfortunately everything varies so much from area to area. The obvious state support for you to look into would be portage, and from medical point of view, physio or OT (occupational therapy). Depending on what's available via Surestart/Children's Centre locally, there may be useful parent courses to help with communication etc suitable for children at risk of language delay etc and/or groups for parents of kids with SN. In an ideal world HV or GP would know all this stuff, but they don't always.

In terms of specific areas of delay, my child's problems were different - language/social delay, but others who have been in a similar position can hopefully give you advice about useful reading etc, and tips to help you work with your child while you wait for assessments/referrals to kick in.

Hello, good you managed to get into system so early!! Took me much longer and only after I first got report by private therapists stating ds is very delayed- until then was fobbed off by everybody. What is the biggest worry, the physical delay, the minor motor skills... If you cannot afford going private for all the needs, choose one which is most worrying- I would go for private paedetrician physio - they will do a thorough assesment and suggest exercizes you can do at home. You can also find private occupational therapists. Do not expect too much from NHS, because of the age they won't be in a hurry and the support varies greatly. Our private physio helped a lot, ds started moving and crawling after the exercizing, without it he would probably still be happily lying on the floor at the age of 12 months!! Good luck!

Ds was referred when he was 7 months old and by 10 months had a full support system in place with physio, OT, speech and language and a place at sn nursery, plus a full range of tests to assess what could be causing his delay. I think a lot depends on the area you are in.

Has your ds had a Schedule of growing Skills done by the HV? I am surprised that the first appointment is such a long way off. Maybe try pushing for an early referral to physio.

In the meantime, definitely self refer for portage (google it for your area), your ds should qualify as he is delayed in more than 2 areas. There is usually a long waiting list, so worth doing it now.

Where is your ds at developmentally - sitting, rolling,babbling etc?

There are a few of us on this thread, who have children with developmental delays etc, who are undergoing the process of assessment and tests - please come over and chat if you fell like it.

Thank you for such a warm welcome to the board and so much great information. I felt so powerless this morning and so fearful about the road ahead. Honestly, your responses have made me feel less isolated and scared already. I keep looking at DS and see a happy boy that, granted, isn't hitting milestones but is definitely making progress.

He's one week short of 9 months and can't sit unaided. He does roll and tries to go up on his legs. He just can't seem to use his hands and arms. If he does their movement is reflexive, rather than subconscious IYKWIM. His hands are firmly in his mouth or holding his feet (in his mouth). He doesn't really babble and certainly doesn't mimic sounds. He isn't interested in reaching out for many things, just his cot mobile and a couple of other toys. I think he responds to noise but the HV didn't seem to think it was enough. He always throws his head back and fights to get into a lying position if we try and sit him up. He is more or less permanently in his bumbo and it is definitely helping his core strength.

We have managed to get an appointment with this paediatrician tomorrow as DS had a scare with brain during pregnancy so I guess shouldn't be a surprise that there might be an issue. He was assessed at one month by this paed who thought he was developing well bar the poor neck tone. He said any concerns should be referred early.

I will def come over to the other thread, thank you hazeyjane for the invite. I hope I have good or at least some tangible news to report.

You need to ask for a physio referral and maybe one to portage or play therapy as they take ages to come through. Wrt to speech, usually early on you can encourage sign through makaton and I found lots of (bad) singing etc helped

Do enjoy him though. I know it's hard but he is still your little boy and he always will be.

there is always more than one way to access support, you just ahve to stamp your feet (nicely of course :) ) in order to be heard.
If it is an 11 mth wait for an assessment team then push for individual assessments fromt eh various proffesionals. Our area has community physios that visit in the home & are run seperate to the child development team.
Make sure you ask the paed if he/she will be the consultant continuing to manage your ds's care until they get to the bottom of his delays (or he catches up). Make sure you understand what his involvement will be, will he be carrying out further investigations while waiting for an assessment.
What health authority do you fall under, maybe someone can offer you some specific advice, privately if you prefer.

So DS has been assessed as being 4.5-6 months ability across the board - he is just turning 9 months. He has loose ligaments which help to explain the physical delay but the Drs seemed to stress that doesn't answer all the queries over his delays.

There is concern about his cognitive delay so will still be referred to paediatric neurologist, audiologist and opthalmologist. We are seeing a physio in a couple of weeks.

We are so grateful to have been able to get some answers so quickly and the Drs are all working together to make sure all the referrals happen and as quickly as possible but they have said the next few months will be very telling. I think we are so relieved to have some answers that we sort of think everything will be ok, if not a bit difficult.

I get the impression physio is pretty critical, do you think portage applies to us? I just want to make sure the activities / play we do with him can be as beneficial as possible.

Am so relieved to be able to stop comparing him to others and just focus on the next skill he needs.

yes, Portage would apply, i think the child needs to be delayed in two or more areas to qualify. Give them a ring and see what they say.

Thanks slack. Will call them tomorrow.

We are in Hammersmith borough at the moment and been lucky to see someone quickly because DS has been investigated during pregnancy through a research study that has just had its funding cut. If we had contacted them in a month they would have been no more and the long wait would have happened. They hope our full assessment won't take as long as originally thought and in the meantime are going to organise the neurology appointment.

I think Portage would definitely be helpful.

The thing I have liked about, wrt ds is that she comes to the house weekly, so ds has built up a good relationship with her (he is very wary of people and has huge separation anxiety). She has also been really helpful wrt advice ad support. She came with me to check out preschools for ds for next year, and is an allround star, as well as helping implement various therapies with ds.

babiki great advice, thank you. He has such a range of delays but there are some that are more worrying than others and we will definitely focus on those. To see him sit would be amazing and if he could show some interest in toys even better. Will focus on these and try and find some professional help to make sure we aren't just flailing around in the dark not focusing on what is right for him.

OwlLady a signing class was the last straw for me! He just hated it and was so obviously different I ended up leaving halfway through saying he was tired and hungry! I will take him back though as I am sure my anxiety about him affects his mood and now I know where we are I am sure he will be a bit more relaxed.

hazeyjane I hope you don't mind me asking. I have seen some of your earlier threads about your DS in my lurking, have you had a diagnosis yet? How long did it take to get a full understanding on what additional support your DS needs?

Sorry, am just getting my head around the process of diagnosis, or not as the case may be.

Thank you

Ouch - don't worry about going to sing and sign classes, you can pick it up from Something Special or a Sing and Sign DVD.

Ouch - Portage really will work on things that you would like to see, so getting him to reach for toys etc is exactly the sort of thing they can help with.

Thank you theLight, on my way to order from amazon now.

Must stop thinking not going to a bloody class is the worst thing in the world and some kind of admission of defeat.

Thank god for MN, would never have come across portage otherwise.

Ds saw a geneticist last year who said that she thinks that ds's problems have a genetic cause, as he has mildly dysmorphic features as well as a few markers for certain syndromes. So far all the genetic testing has come back clear, but his photos were shared on a genetics database, and he is now being tested for Kleefstra Syndrome. If this comes back clear, his geneticist said that he would be entered for a longterm study, looking at developmental delay and genetic testing. I think the thing with genetics is that it is such a new field, that new syndromes are being identified all the time. Before this he had an MRI, and a basic chromosomal test - these both came back clear.

As time has gone on, the desperation to find a diagnosis has waned a little. If we have a diagnosis now, nothing will change about his therapy, and he will still be ds. But it still feels important to search.

The way the system works here, is that once it was established by a developmental paed that ds had significant delays (at 10 months his age level was at 1-3 months) a Team Around Child meeting was called, at which all the professionals that would be involved in his care sat around a table with us and discussed the best way forward. It was decided that he would benefit from a special needs nursery, which we attend twice a week, and here he sees a SALT and a physio, and has a keyworker who works with me to implement therapies suggested. He also sees a physio and Occupational therapist once every couple of months. He has weekly portage and is going to start weekly hydrotherapy in Sept.

I found it really helpful to be 'doing something' so all this input is great, but I also do a weekly music class (which includes some Makaton) and I take him swimming twice a week. Meeting other mums has been really important to me, a few in rl with children with similar issues, and most importantly parents I have met on here, who have been amazing.

I found mother and baby groups and playgroups and being around nt children really hard, but unavoidable (I have 2 dd who are 5 and 6, and a lot of my friends had dcs around the time I had ds). In a way it is easier now he is older (he is 2 now), or maybe it is just that my skin has got thicker!

Ds sat when he was 12 months, and was sort of stable sitting by 15 months. Once he was sitting he did show a lot more interest in toys, but everything like this has taken a lot of input from us.

Please don't worry about asking questions, pm me if you like and please come over to the bumpy road thread if you feel like it.

Oh and wrt the signing, I haven't done any classes, but have picked up loads from Something Special, and just from googling signs as and when needed.

Ds has a severe speech delay, and his SALT is going to send me on a Makaton course next term (yay!)

Hazey thank you for sharing so much, deeply appreciated.

I know DS will be fine, and will we. Might need to find a few stock answers to the look of surprise at DS age versus ability but just doesn't seem to matter so much already.

Am going to crash after an exhausting day, feeling positive and ready to join you on the other thread.

I found it very very hard at the age your ds is now, and still do, but I have become more focused about it.

I just wanted to add that there are some really good makaton dvds on Amazon, we got this one, and i have learnt nearly every song watching it over and over with ds and the dds (they also sign - they are better than me in fact!), but the 'singing hands'ones are supposed to be great as well.

I also wanted to say how important it was that i found things that both ds and I enjoy, so I stopped going to the nt playgroup at the end of our road, which I would leave in tears every week, but stuck with the music with mummy's class, which was much more organised and where the teacher knew about ds's issues (and put me in touch with a woman who has a ds with a genetic condition, who has since become one of my closest friends). I found swimming brilliant and something we both love, and went with a friend who I could talk to about what was going on.

contact your local SN school ours had preschool outreach & offered baby & toddler swimming sessions in their lovley warm hydro pool... great for the muscles & relaxing for you too.

Dd2 was similar - lots of issues from birth and global delays. She had slt and physio from birth though, as it was pretty obvious there could be ishoos. She loved portage.

She sat up kinda at 12mos, and had a standing frame from her first birthday (and also a nursery placement for two mornings a week). She did crawl eventually, and used a walker for about four or five years. We were told she probably wouldn't talk or walk. She's 8 now and walks, runs, some loon teacher let her into the school choir, and she generally won't shut up. She skis, horse rides, goes to brownies, loves her very cool low rider trike (like a go-kart) and this week is at dance camp. She has cp.

I'm only giving you a glimpse of her because she is completely unrecogniseable from her prognosis, and from any glimmer of how she presented anywhere before, well, three, really. At that point the jury was still out on future physical and learning disabilities. Small people are very complicated. Her first therapists wouldn't be able to pick her out of a line up now. She didn't smile until she was 6 mos, and had v little facial expression. Just a blank.

The earlier the interventions, the better outcome.

Has ds had an MRI since birth? I'm guessing if there were anomalies during pg, they will refer for another one. Do you know which Neuro? We used Antonia Clarke at st George's, she was very good and v honest. The consultant paeds we had were a mixed bunch and it was a relief to actually sit down with someone who knew brains.

It is reasonably normal to have a 'developmental delay' tag for some time btw - unless an easily identifiable cause or syndrome is identified. It gives the profs time to get a good start on therapy on monitor for changes. Some kids do make remarkable progress and 'catch up', whilst of course others do end up with a dx. Dd2's presentation changed so much that she was on her second dx at four. She still has cp, but the presentation is very different.

We went to a communication and feeding group run by a slt from 6 mos, which was brilliant, and slt also arranged for us to attend a makaton course v early. There is a makaton DVD available, but something special is fun too. You can tell the parents who have the makaton DVD on loop. They are the ones who can rap goldilocks. I did go to baby massage classes with dd2 which was utterly pointless. She essentially screamed the entire time and I did no massage at all, just ended up either watching or leaving every week, v depressing. But there are usually local sn groups which are more accessible.

Good luck with referrals! X

Ha ha, x post, Hazey . Yar, that one. I bet you can rap goldilocks, too.

I just wanted to answer the question about attending Baby & Toddler Groups. I run one and so DS has gone ever since he was born. We both enjoy it.

It is difficult sometimes seeing how far behind the other kids he is, even the 18 month old ones (he's 3.5). But it is helpful to see that ALL the other kids are different to each other. They might fit more neatly into categories but there are some who talk as little as DS (in public), some who are as bad with food, some who are worse behaved, lots with worse tantrums and some who are manipulative ("you're not my friend anymore" etc).

It is also helpful to be able to compare to a wide range of NT children rather than just my older son (who isn't standard issue anyway, he's G&T and very shy). It does make me realise what is ASD and what is just standard 3 year old stuff.

I'm very open about his ASD and haven't had any adverse reactions (maybe because I run the group LOL). In fact everyone has been very positive and supportive. It also helps raise awareness that ASD is just an aspect of his character not some sort of alien behaviour thing. Neither is it "naughtiness".

It has helped him "socialise" alongside other children and adults and as a result he isn't phased by new people (a big benefit!). Plus it gives me somewhere to go every week and let someone else make the coffee and wash up!

Hope this helps if you're wondering whether to keep going or not!

madwoman your DD sounds unstoppable, must be wonderful to see after such a difficult prognosis.

DS has had an MRI since birth, he had one around 6 weeks and they though all looked ok. There was still an isolated anomaly which they thought in itself would be ok but who knows if it has changed. The unit that did his MRI's have been cut, utter tragedy as great people doing amazing work, so I think another MRI now will depend on what the paediatric neurologist thinks.

I know DS is delayed but I just think that if we can work on his physical issues they will unlock the cognitive ones if you know what I mean?! Will just have to wait and see I guess, I suppose the reason Drs think next few months will be telling is because we should hopefully see some improvement in his physical development which may give a clearer picture on his cognitive ability.

We were supposed to go to a class today but he fell asleep just as we arrived so I turned around and walked away. Typically he only slept for half an hour and had a nightmare day of no sleeping, needing to see me at ALL times and generally staggering me with how difficult he was. Day was topped off with my skirt being blown right up above my bum, not embarrassing at all!

Thanks for your post Anna. I am going to try a couple and just see how we go, if he enjoys it I will take him back, if he doesn't I will draw a line under it and do something else. He loves laying in the bath, no splashing just feet in mouth, so will try him swimming. I had taken him to lessons but, in hindsight, his neck muscles were weak which is why he didn't like them. I think he would like being in the pool now.

Have ordered Makaton DVD and bought a load more books too to try and keep my dulcet tones ringing around him as much as possible.