How do you cope when your DC is classed as "developmentally delayed"?????

[WavesTheWhiteFlag]

My DS is nearly 6 mths now but from the word go hes been seeing all sorts of docs and had numerous tests. He has problems with his muscle tone and hasnt reached the development milestones of my fellow NCT mums babies. He cant sit at all, has great difficulty holding his head up etc etc...

The thing is I am still struggling to come to terms with it. He doesnt appear disbaled to most people but I can see the differences in him and other babies so much more now and its breaking my heart to think there is something wrong, but we dont know what. So far everything has been ruled out which makes it all the harder.

I just dont know what to do with him most days, he cant play like the other babies. Its like having a newborn some days even though hes the size of a normal 6 mth baby boy!

Maybe there are some mums out there who have experienced the same, I feel so alone in all this.

Hi Waves, the feelings you describe are perfectly normal & all of us on here have experienced the heartbreak of comparing our children to other "normal" (sorry horible terminology i know) children.

I can tell you that it does get easier... don't know if you just get used to it or just develop a thicker skin but honestly it does get easier.

Your ds is still very young & your feeling very new.
It is good that he is being monitored & seen by docs but what are they offering you & your ds in terms of support. Do you have a physio?
Ask your HV to give you details of your local SN mother & baby/toddler group. Tough to walk through the door on the first visit BUT I can honestly say when ds2 was a baby it was the place i felt most at home.
All the children have a variety of needs, so no comparisons, the parents all understand the worry & anxiety & emotion you are experiencing.
And the other parents can be a great source of knowledge.
Remember take care of yourself too x

what she said ^^

dd2 was 'developmentally delayed' for two years, when she officially became 'spastic quad cerebral palsy', which at 4yo became 'athetoid cerbral palsy'.

at the time it was really frustrating, because 'developmental delay' was so vague, but these days i can understand why profs are so reluctant to commit to a specific dx, esp when there is so much time for littlies to catch up/ improve/ or for more specific issues to come to light. dd2's muscle tone has changed so much over the last 6 years that i honestly wouldn't have believed it possible.

it isn't easy though, and i can remember the first year being truly the worst. as anon suggested, we went to an sn group from 6 mos, which was amazing, and opened up a whole raft of new experiences, ideas, and opportunities to mix with mums and babies of literally all sorts lol!

i would also suggest visiting your local toy library and digging around in both their baby toys but also the sn section - it's a good way to try out lots of toys to see which stimulate/ get a reaction, and which might be worth maybe buying, without the distress of spending a fortune on stuff that doesn't quite hit the mark. some toy libraries have free loans for sn too.

have you applied for dla yet? it can help with the added costs of trying new things/ travel to slightly out of the way sn groups etc etc.

do you have portage? find out how old lo's have to be to start in your area - portage workers can be worth their weight in gold and often have all sorts of interesting play/ sensory stimulating tricks up their sleeves for dev delay babies.

and to finish - dd2 was given a nursery place for two mornings from her first birthday, which gave me the break i needed to keep myself together in the face of everything else. remember to take time for yourself

it honestly does get easier, i promise. but i wouldn't have thanked you for telling me that before the first year was out...

Thxs for the replies. My DS currently has physio which has made such a difference, and he now goes swimming once a week which helps get those limbs moving. There is a SN group at my local sure start but it seeems to be more for older kiddies, nearing school age. Dont know if there are any other babies.
I've only just heard of Portage so gonna get more info, if they can help it sounds really good and I think it'll work well with his physio. Trying to find toys he can play with is a nightmare, he just cant grab and lift them well enough. Esp teethers which is causing lots of probs now he wants to chew something!! And of course a lot of toys for his age assume they can sit in some way, not easy to play with them lying down or sat in his swing.
I think now that we are hitting the ages when you expect them to be able to do certain things is defo the hardest. Its funny cos when DD was little I never even knew what she was 'meant' to be able to do, but since having DS I cant escape it. Filling out the form for DLA was so hard, but seeing other babies is what makes it difficult, esp when my friends are all first time mums and look to me for when their lo's should be doing things, and my DS is no where close.
It doesnt help that because he is just 'developmentally delayed' there aren't exactly any support groups, like there are with downs (my sure start centre has a group just for that). And although my HV is good to talk to etc, she doesnt really take any extra interest in him, which makes me feel like he isnt important enough. Totally silly I know.

sure there are, there are always pan-disability groups somewhere, it's just digging them out. (although have noticed the 'trendy' support groups - currently children with diabetes in our area) getting a lot of press. obviously a needed service though, but depressing if you have a child with a different issue. sure start would be a good place to start though - and if there isn't a group for teenies, pop in and ask them to start one. i bet other mums will come out of the woodwork. if there are really none, contact the leaders of the (specialist) groups that exist and ask if you can come along. dd babies can share a lot of the issues of other disabilities inc downs, and really it would just provide a space for you to have a cup of tea with parents going through similar fears.

whereabouts are you? the other thing i used to do is loiter meaningfully when i spotted other tots waiting to see developmental paed/ physio etc, and strike up converstations. ask your physio if she sees any other lonely mums that might be interested in coffee, and ask her to pass on your details.

in the near future, you need to ask your physio to supply some more supportive seating so that you can try some different activities (sometimes they will do this, sometimes will refer to OT - depends on area). at this point a bouncy chair should be fine, and you can prop as necessary with rolled towels. usually they offer a 'tumbleform' or one of the jenx chairs first, but it can vary, depending on where you are. personally i love the tumbleforms, as you can alter the angle with the velcro to get different levels of upright lol. they are also useful for feeding etc once ypu establish solids (not sure where/ if you are onto that).

the mouthing thing is tricksy. dd2 couldn't get her hands to her mouth, so we essentially had to provide mouthing expereinces for her, either by gently encouraging a bend in the arm and holding it so that she was able to get her knuckles in, or by hand over hand holding a teething ring for the same purpose. she didn't ever really mouth anything except her knuckles really, so we spent a good deal of time holding them in the right position! really important for later development that this opportunity is provided.

and don't forget the toy library! the sn section is your friend! elc used to do a really lighweight shaker with a pencil thin handle - we used to wrap dd2's hand around it and hold it hand over hand to shake. your physio can give you some ideas about positioning to make some things easier, and often can give you some more equipment (lol) - we had a wedge and a gym ball for different positioning and exercises, which can also be used to encourage/ aid some sort of play. once dd2 was able to make some sort of intentional movement with her arm (a sort of wave lol) we made the most of it - those shakers that you can wrap round their wrists/ ankles are good. essentially you sort of go 'back' to the toys that are designed for younger babies and work out how you can adapt them to your child's abilities (often essentially you playing with them to stimulate attention lol, but you have to start somewhere)

i hope i'm not sounding too lecturey - as i said, the first year is really very hard, but there are lots of things you can do. it's hard sometimes to realise how much you are doing, and notice tiny glimmers of development. our paed was always very positive about noticing improvements between appointments, however subtle - sometimes we need to step back a bit to really see change.

is he smiling yet? dd2 finally smiled at about 6 months - i was blown away and had given up all hope. it was very difficult to keep up stimulating activities etc when there was no facial reaction at all - sort of 'why am i bothering', but it was so worth it!

Riven makes a good point about the competiveness of the first year. At least that aspect gets easier later in life, when they develop their own personalities so you've got something other than milestones to talk about.

Waves, you are not alone! There are lots of us who have been through the same feelings of isolation, but you do need to try and find a group in your area - as the others said above, getting through the door the first time takes courage, but they will welcome you with open arms.

MWITA Im in Northumberland, there is a group which after speaking to physio today might be good, shes hoping that more little ones will join it as its been under used at the mo. Unfortunately I dont drive so am limited to the local area, which doesnt offer much. And its hard to get to places with my DD in tow!

I have a Jenz chair, but to be honest I havent used it much, although we have bought some of the little rattles and toys that the physio uses as Xmas presents so that he can play with them in his chair. Your suggestions sound like a good idea, its defo a lot more work having to play with him all the time, whereas DD would occupy herself for a while at his age. He just gets so frustrated when he cant keep hold of his toys, poor little thing. One thing, how did you use the wedge? that sounds like something that might work for him. He fav toy at the mo is his sister ball, which he can suprisingly hold and get to his mouth!

We dont have any sort of diagnosis, he fits the hypotonia and hyper reflexes of cerebal palsy, but thats just my opinion. We have jsut started solids this week and he seems to be able to swallow ok so it doesnt look like its going to affect is oral muscles. He can smile and laugh, from an early age, with I must admit is sometimes the only thing that keeps me going, just wish he would do it more often.

Thanks again, and if anyone is up north and fancie a coffee let me know

My daughter was really ill when she was born. We were told that she was developmentally delayed at about 6 months, then by 9 months we were told she had cerebral palsy. She's almost 4 now and she still has difficulties holding her head; she can't sit up or bring her hands to her face or mouth. She has no speech. The first year after diagnosis was difficult. In fact we didn't tell anyone what we knew. We kept hoping it would get better.
Now we've accepted her for what she is. She's lovely and smiley and happy.
I think every child is different, and every child with cerebral palsy is different. You still love them.

waves - lots of different ways to use a wedge, but we used it for tummy time, but positioned so that arms were over the wider end? (bit difficult to explain. toys can then be placed on the floor 'under' the arms iyswim - depends on head control etc though - and a similar effect can be produced by laying him cross ways across your lap whilst you sit straight-legged on the floor. in fact this way is better to start with, as you can use one arm to keep bottom down (and stop small person landing on head via gravity) and use your other hand to facilitate play - jingle balls, rattle, scrunch foil etc etc.

you can also do it with rolled towels etc. one of dd2's fave positions was lying on her side (obviously wedged front and back to prevent rolling lol) it was one of the few places where often her fist was wedged somewhere near her face and she could suck it without any help!

not oop north myself (not in the country, actually lol) but have you joined special kids in the uk? a very lovely site with all sorts of parents of all sorts of kids - and with lots of meet-ups all over the country. some kids have dx and some don't, it's no problem either way. really would recommend you join .

your physio sounds as though she's keen to get some mums of littlies together - good for you all - keep pushing her on it!

one of the best things which worked for dd2 was one of those sit-in play gym things - like a baby walker but without the wheels?

when her head control became reliable, we wedged her in upright (padding her out with towels (can you spot a theme developing yet lol?) so that she couldn't topple, and padding the area in front of her in case her head did come crashing down lol. because her trunk was so well supported, she could at least look around from a different angle - and it really worked to encourage her to bat at a few of the toys. something to think about for a bit later, anyway. i tried her in a friends until i was certain it was going to work - sometimes they have them in toy librarys to borrow too... (i should add, the physio nearly had a coronary when we told her - i got the standard warnings etc etc - she wasn't keen at all. then we showed her dd2 in it. she was a total convert, and actually borrowed it a few times to try out with more of her little physio clients! in fact, when dd2 grew out of it, we donated it to the physio department, and it's still going strong on loan to other families with delayed tots!) obviously this is really only a goer once head control is a bit more reliable but something to look forward to?

Hi Waves,
I nearly jumped on you for your comment on support groups such as downs. Lol, my son being downs primarily though not fitting into the whole downs support group. With us bringing problems they had never had before. My son is severly developmentally delayed...he's nearly 9 but functions around 18 month. BTW I'm North Tyneside. Take care x

Hi Waves
Oh, that horrible first year, where other mums are whingeing about how little Firstborn won't get off the boob, and you're worrying whether you're going to have to make the dash of shame back to hospital because you can't face re-fitting the nasal-gastric tube. And they're worrying about which is the best nursery, while you're worrying whether your undiagnosed and developmentally delayed baby will ever even take her first step. I felt so alone and isolated for most of it, that it's actually a complete blur. I was so desperate to meet some RL mums I could relate to. Unfortunately despite living in inner London there were no disability drop-ins at the time, but portage really was my lifeline--they started their own stay and play sessions, and that helped me meet other mums.

DD is now 3.3 BTW, and is at mainstream nursery. She has had a battery of tests and lots of therapy input and will likely end up with a diagnosis of severe/moderate learning disability. Every child's developmental delay is different though. Whilst DD was able to walk by the age of 2, she still isn't saying much and has poor fine motor skills. Her friend, also with a developmental delay diagnosis, can talk beautifully but is yet to start walking.

HTH, keep posting, I found it incredibly helpful--quite a few of us on here have children with developmental delay.

Ooo I like the sound of the play ring. I hate that he has to spend all his time flat on his back, Im sure the ceiling must be getting pretty boring by now lol! Defo gonna try the wedge/towel suggestion. Our physio showed us a similar thing to get him to practise the crawling poistion. He hated it poor thing, prob cos she kept pushing his bum down...

Devientenigma - I meant no offence, actually couldnt think of another diability group when writing the post, and certainly wasnt trying to say anything bad against it. Far from it

Got one bit of good news to share, it seems my gorgeous DS has no probs with eating... hurray. He is loving his purees so much so that I had to hastily heat up some more.. oops!

Thank you for all making me feel a little less alone and that there is light at the end of the tunnel, no matter how dark it seems at the time. Im blessed that he doesnt have severe problems and who cares if he doesnt walk for ages, saves on trying to baby proof the house again

lol waves - that's fantastic re eating. definitely makes life soooooo much easier. dd2 started out with an ng tube and we had a lot of problems during the first year, but thanks to a brilliant slt she is now able to eat a normal diet (albeit with a few quirks!)

worth working out how you will move on to finger foods though lol - i know it's early days, but with kids with poor fine motor who have difficulties getting their hands to their mouths, it's worth thinking in advance lol!

has the physio given you na gym ball yet? they can actually be quite useful for promoting head control, as well as lots of other things. dd2 used to lie on her tummy on ours (with us holding her lol) and try and lift her head when we rocked it gently. she also found the vibrations interesting if we tapped it, and later learnd to bang it herself, and make noise with her mouth against the surface. mind you, she hated it when we made her do trunk exercises sitting on it. ya gotta take the rough with the smooth....

he sounds fabby - hope he continues to enjoy investigating all those yummy puree options.

Oh the joys of puree's. I was so hoping to miss this out second time round and have a go at BLW but no luck lol. The only prob with feeding so far is his arms, they just seem to get everywhere! And he keeps trying to tip his head back which we've been told is a big no no, but apart from that its going good. Although from his facial expressions you wouldnt think he was enjoying it at all, but he hasnt spat it back out so he must like it.

I dont see the physio again till Jan but I might ask about a gym ball, sounds like a lot of fun, goodness knows how I will keep my hyper toddler of that one tho'!!

Hey, there's no reason why you can't turn physio into a turn-taking game, make it more fun for all of you?

Meltedmarsbars - not sure what you mean?

Riven - the physio does that sideways thing, wasnt sure why but I guess it makes sense now. Well done on the vid by the way. The physio also suggested videoing lots so that we can see the changes better.

I remember my DD was assessed by a physio at 8 months old. She couldn't do anything, she basically just fell over when they tried to sit her up. I remember being SO scared and worried for her future.

Now she has low muscle tone but runs around and climbs. She walked at 2 (is now 3) So please don't despair yet. they can improve so much, I would never have imagined it.