Admitting that DD is developmentally delayed

[Wispabarsareback]

This is the first time I've felt brave enough to venture into the 'special needs' topic (am gradually emerging from denial) - so a hesitant 'hello' to you all.

I'd love to know about other people's experiences of 'developmental delays'. Briefly, my DD2 is nearly 15 months; she was born with a congenital heart defect that has recently been surgically repaired. She doesn't have any other diagnosis (other than reflux, which she has severely), but it's been apparent for some time that she's just not growing and developing as she 'should'. Her paediatrician thought she might have an underlying chromosomal abnormality (linking together the heart defect, feeding problems, lack of growth, lack of energy, poor motor skills, etc) - but various tests and a detailed examination by a geneticist seem to have ruled that out. (I say 'seem to', because the geneticist wants to look at DD2 again in a few months - but for now she sees no sign of any genetic condition.)

We saw the paediatrician again today, and she used the term 'developmental delay' for the first time (I think it 'officially' goes on DD's notes now, rather than just being something we speculate about). Her view is that DD may be slow to do certain things because of her heart condition (which affected her a great deal - she has been on medication for heart failure since she was 9 days old), but that we shouldn't assume that this is the case - ie it could be unrelated to her heart. I don't assume it, as I know other children with similar heart conditions who walk and talk etc. The paediatrician says that DD2 will 'probably' walk at some point, and she used the term 'special needs' for the first time. But she reckons the fact that DD doesn't even try to get herself from lying-to-sitting is quite a serious problem.

Life is a big struggle in a lot of ways right now. DD2 is very hard to feed, and she vomits a lot. She can't 'do' much (she sits if I sit her up, but doesn't get herself into a sitting position, let alone standing or crawling etc), so it's quite hard work to keep her amused. I have an older daughter (5), who is wonderful with DD2, but I constantly feel that I'm short-changing DD1 because DD2 is so high-maintenance. I can't stop worrying about what the future might hold for us all - perhaps that's the hardest bit, at least for now, not knowing what we're really dealing with. At least if we knew, we could adjust etc.

Does anyone have any thoughts or experiences to share? I feel deeply unequal to the task of being the sort of mother DD needs. I'm not patient enough, I get frustrated and upset, and there are times when I just ask myself why we disrupted our lives by having a second child. (DH and I were very unsure about whether to have another after DD1, and when things are tough - as they often are - I can't help revisiting all that, even though it's clearly all in the past.) I worry about whether DD2 has an OK life - she often seems to be miserable! And so am I - we've done a lot of crying in unison recently.

Sorry for the long whinge. I have to get over the self-pity and find a new way of being, for all our sakes. And I want to help DD achieve as much as she can, while accepting her the way she is. Any thoughts?

Well firstly welcome to the sn board. There are loads of mums on here with lots of knowledge and experience not to mention hot tips. They've come to my rescue many times.

My DD2 also has dev delay. She is nearly 17 months, my DD1 is 3.7years. If it helps, I know EXACTLY how you are feeling, but believe me you will get past this and once you have a strategy in place and therapy for your little one you will be fine.

DD2 cannot get herself from lying to sitting, she shuffles a bit on her bottom but otherwise just sits. She is tactile defensive which has led to this delay but like yourself are undergoing blood tests etc to rule out the chromosome and genetic disorders.

After the shock (that you are currently experiencing), we started to get Physio, this then led onto other therapies. DD2 now receives weekly physio/OT/SALT and Portage and she has come on so much. We work hard on her and I do therapy every day. I'm lucky as my mum takes DD1 for an hour on the days she's not in pre school so DD2 doesn't miss a day.

All I can say is accept all the help you can for DD2, meet other mums who have sn children and keep talking on mumsnet, I have had so many queries and problems sorted by these mums that the specialists have struggled with.

We're all very positive about DD2's delay now, we've accepted it and this is the hand we've been dealt so now we just have to do the very best we can for her. DD1 even helps out with her physio and loves it so don't feel you have to leave your DD1 out. Rope them in and have fun. Enjoy your DD2, she might need a bit more input than NT children but she's very special and a lovely devoted family will help her no end.

Big hugs xxxxxx

developmental delay covers a huge range and has 2 main components.
Physical delay - when physical development doesn't happen as it ought to
mental delay - cognitve skills.

Physical problems can slow down cognitive development even if a child isn't actually intellectually impaired.

I'd say your dd is too young to make any prognosis. I have a friend whose son had a heart defect so it affected his motor skills cos he was tired, got out of breath and those affected his cognitive skills - slower to learn etc. My own dd has massive physical delays - she is at newborn stage at 4 cos her CP is so very severe and her cognitive learning is 'delayed' because its hard to learn when you can't use hyour hands and have bad vision. But she is not intellectually impaired.
And then there are kids with no physical delays at all but who have severe cognitve impairments.
And a whole host in between.

I assume your geneticist will want to check again for chromosonal problems and then rule out mitochondrial disorders before you geta clearer picture?

Your paed can get her reffered to occupational therapy and portage to maximise what she can do and maybe you can access a SN nursey from 2 to give you and your older child a break and to help your child learn.
Have you used reflux drugs or thought about a fundoplication to cut down on reflux? That'd make any child miserable.
Could you list questions for the paed?

the first couple of years is hard. You haven't got the life you planned. Counselling might help and talking to other mums who have been thrughthis.

good luck

Hi and welcome. My son has a speech disorder but I just wanted to sympathise with your situation. Its hard when its so new and you don't know what lies ahead.

You don't need to be a special person to parent a special needs child. You just need to love her and the rest will follow. As mumgoingcrazy says - you'll get lots of great help and advice on here. Keep posting.

Just wanted to say hello, really. DS has Developmental delay due to massive brain damage caused by hypoglycaemia suffered at 2 days old. He is only 5 months old now (and doing VERY well despite some initial doom and gloom prognosis)so I can't really share any experience with you - I'll be asking you for advice in the future! There are lots of Mums with experience on here so I'm sure you'll get lots of advice.

I know how you feel, though. You are allowed some self pity, you know, it IS hard. I struggle and I've only got DS. In the early weeks and months I found it very hard to cope with, but at some point, and I honestly couldn't tell you when, I accepted DS's condition and realised that he is a wonderful little person who I wouldn't change for the world. Though some days, like today, I'd swap him for a cheese and pickle sandwich.

I do think I went through a period, not unlike grief, where I had to let go of the little boy I gave birth to who was perfect in every way, before I could put all my energies into caring for and cherishing this lovely boy, who is just as perfect, but a bit different. Perhaps this was when I accepted DSs condition. If it is possible, I love this little boy even more because of the fight he put up to stay alive and for every little milestone he reaches, which is so much more difficult for him than others.

If I could give you one tiny piece of advice, which I know is easier said than done, is to focus on what she does rather than what she doesn't. DO NOT look in baby books at developmetal milestones and try not to compare her with other babies. Once I learned to do this, I was much happier (though I still have to resist temptation sometimes ).Treat every little step forward as a the massive leap that it is and try to focus on the good things she brings to your life.
Also, be kind to yourself.

Hi Wispa

Im sat here thinking of thinks to say to make you feel better and I wish I could, you do sound like your having a tough time at the mo, and I think sometimes it helps when someone says thats crap (wanted to use the naughtier word but thought might be frowned upon) instead of trying to solve it like men always do ifykwim.

Please dont question your mothering skills you sound a fantastic to me otherwise you wouldnt be bothered. Your human at the end of the day and its human to be frustrated, angry and upset.

My ds who is 2 was born with his heart back to front and we were also told he might have chromosomal probs when older, everytime we go to the specialist it is evident that they dont really know themselves how his body will grow and develop with his heart. Nobody knows.

We spent the first few months paranoid about whether he was happy, did he have this and that, but he is doing amazing, he is 2 now and hv said he is the brightest 2yr old she knows and wants me to to ivite her to his graduation, amazing really as the specialist said "he will never be a doctor, but may work in Mcdonalds" and the child we thought was "normal" has suspected Aspergers, my point being, you dont know how things will pan out.

We were told when ds was born he would have to have a switch op at Alder Hey and be whisked of and my little miracle worker fixed himself (well kind of) perhaps your dd will find her way of coping.

Somebody once said to me "these special children are sent to the people that god feels are special enough and strong enough to look after them" I always take solace in that and hope you do.

Ditto to what feelingbitbetter said: Focusing on what they do do and not on what they don't is crucial, and even more important try not to compare to other children her age. She will reach her milestones in her own time and all should be celebrated. xxxx

Thank you all so much for your replies - I feel better already to know that other people are dealing with the same issues. Of course I realised that must be the case, but it's hard not to feel isolated. I know other parents of 'heart-babies', but no-one from that group seems to be dealing with quite the same things as us. (Although there's quite a culture in the group of being extremely positive and glossing over the difficulties...)

One of the things I find hardest is being with parents and children of the same age as DD2 - I know she is special, and she's done so incredibly well so far (five weeks before she was born we were told it wasn't too late for a termination - on the basis of her heart problems), but sometimes I'm just overwhelmed with anxiety when I see other little ones running around and being so energetic and curious about the world. And then having to 'explain' her to other people - I hate that, and feel that it's unfair to have to make 'excuses' for her, when in many ways she's so lovely and perfect. She is very expressive in her own way, and has such 'dignity', if that isn't a silly word to use, when dealing with all the investigations and procedures she's had to go through. She had open-heart surgery five weeks ago and amazed everyone with how quickly she recovered, and how perky she was. I have no doubt about how much I love her and how committed to her I am - the moment we heard that she'd come through surgery and we went to see her in intensive care was every bit as amazing as the moment of her birth.

I'm sure it's absolutely right to focus on what she can do, and on the progress she has made, small though it is in some ways. And re needmorecoffee's point - it definitely seems to be the case that DD's cognitive development has been affected by her physical limitations - I see no sign at this point of mental impairment.

Thank you again for all your supportive comments and helpful suggestions. We have various tests and things coming up. There's a long wait for appointments with therapists etc, but we are trying to be patient.

Will be a regular on this board now!

a quickie from me for which I apologise.
My dd has noonan syndrome which you may want to check out?
Sorry for this but so much of what you typed rings a bell.
My dd is mildly affected but still had major dev delays at 18mths - no sitting rolling but could weight bear and tummy crawl. Motor skills poor fine motor dreadful. Feedi g issues too.
Amazingly dd has outgrown much of her initial delays which is another reason I wanted to post. She is now age appropriate at age 6 for most things. Some fine and gross motor issues remain due to low muscle tone tho.

But at 18mth she was severely delayed and got through it.
So please do not think it cannot get better.
Please do let me know if you want to know more.
Hope this comes across ok done in haste x

oh dd was born with pulmonary valve stenosis which was moderate enough to be watched. At one stage they suspected much worse. So can only imagine how scared you must have been x x

HI and welcome.

I have a 3 year old with severe developmental delays due to a chromosomal disorder and epilepsy as a baby as I would like to say im extremely impatient and often get frustrated and upset just as you say you do.....I think we all do.

YOu'll find wondeful support on here and knowledge and experience like no other- if you want to moan someone will listen and if you want to boast your dd latest achievement (however small) someone will be here to brag along with you.

This is going to be a tough time for you what with appointments and various testings etc but it will and really does get easier in time. You find ways of adapting and coping and getting through.

You do go through a grieving process when things arn't how you thought and dreamed they would be but you get through it somehow. It is so important to focus on all the things she can do as already has been said. I used to compare my ds in the early days and it drove me INSANE but once I learnt to relax and let things be things were alot better. I always felt I had to 'explain' ds also like you said you do your dd but I dont anymore. I look at him and smile 100 times to everytime I look at him and feel sad!!

Keep smiling and you must make sure you keep talking on here.

Oh Piffle I was so sure DD had Noonan's - how interesting to hear about your experience. But the paediatrician and geneticist - although they didn't dismiss it - don't think that's the case for my DD. But it seemed the closest 'match' for the things we were experiencing with DD. How fantastic that your DD is doing so well now - that makes me feel so much more positive. How old was she when she started walking etc? Does she have heart problems? Thank you for posting!

Hi Wispa

My DD, 2.11, has just last month been assessed with 'delays' of between 12-18 months, so I can imagine we are at kind of the same emotional stage - it sucks, doesn't it?

I agree that the hardest part is when an everyday event slaps you with the reality of the difference between your DD and her peers.

I was at a party yesterday, and DD had not been able to concentrate so wouldn't have enjoyed decorating her party box, so I did one for her so she didn't miss out while she went out on the swings. When she got back in I was delighted to present her with her beautiful box, and she melted down because she wanted to rip it open. I almost cried right there.

But, do you know, I believe that we will have more treasured experiences than parents of NT children, because with every achievement will come triumph. My DDs IEP at preschool has a target that she will stay at an activity for 5, yes 5 whole minutes. Fancy having to write that down as a target. But when she achieves it, I will rejoice. For other children, it would go unnoticed.

Be kind to yourself. It's a lot to adjust to.

wow! Thought your description sounded similar!
I say that as was on the US noonan support boards and saw massive variations on degrees of symptoms.

Dd has the physical features which truly mark noonans as well as the heart defect ( thankfully mild in her case)

She walked at 27 mths but cruised from 15mths BUT could not pull to standing or sit at all, not even supported.
She did not talk til 3 yrs

I could go on for hours the progress she has made
In no small way down to physio, portage, SLT and me plus supportive health visitors (growth issues as dd very light) and wonderful genetics and paediatrician.
Mightbe photo of dd on my profile?
Could never have imagined 3-4 yes ago that she would be doing so well now.
Miracle in our eyes!!

no pics on profile whoops
But if you are on facebook or want to do email I'm happy to exchange photos?

Hi Wispas, welcome to the SN board . My DD has a speech disorder so completely different but wanted to say "Hi"!

Piffle, I'd be very interested to see pics at some point. My DD doesn't have any physical features to suggest Noonan's or any other chromosomal condition - the geneticist had a good look! But DD ticks quite a lot of other boxes. Pulmonary stenosis was one of the problems she had with her heart - now resolved, thanks to the amazing surgeon who operated on her.

An earlier poster said I was probably in shock, and I think that's right - even though I had tried not to pin all my hopes on DD's heart surgery, I think I had really trusted that once her heart was 'fixed', she would have the strength and energy to 'catch up'. And that still might happen. But the paediatrician wants us to be prepared for it all being much more complicated than that - deep down I had suspected it, but didn't want to acknowledge it, and now I have to.

Thanks again for all your support.

Hi Wispa,

I have a DS with GDD, he will be two next Wednesday.

We knew things were not "right" with him pretty much from birth, but it took a long time for the GPs and HV to even refer him to the Child Development Team - he was 10 months old when they told us he was severely DD.

He also has had hearing and vision problems, when he was 4 months old, and not smiling or tracking, he was diagnosed with delayed visual maturation. Now he seems to see well enough. He had grommets put in a year ago, and they have helped, but his hearing is still deficient so on Friday he's getting hearing aids.

He has had a whole range of tests, some quite invasive, and other than one test related to mitochondria all tests have been normal. We are seeing the metabolic team at GOS next week and we hope to learn a bit more about him then.

I have found it very hard to be around NT children (I also have a 4 year old). I have lost all perspective on when children do what, even how big on average children are at different ages (DS is quite small for his age). Also I have found it really hard not having a dx, although we will probably get one next week. We have in the past thought he has CP, musclar dsytrophy or Angelmans, but everyone says he is an anomaly, a mistake, or a mystery. Also it is hard not knowing what the future holds, is his life expectancy limited (which we'll find out next week), what sort of school will go to. I have generally found the therapists and Drs we have dealt with good, but sometimes the bureaucracy is just so crazy it makes me want to scream.

He has been having a lot of therapy, and he has come on a lot. He started to crawl at 16 months, walked at 21 months, but he is still very delayed speech-wise. He seems to understand some things.

I have some idea of the thoughts, emotions and feelings you are going through.

All the best, and I hope you can get some answers soon,

wispa hello again!

My dd was diagnosed on low weight gain, delayed growth and the PVS

she actually had very few physical markers at 10 weeks.

she has become more more noonie as she got older but now aged 6 is growing into her features more as she has filled out - very common with Noonans

my email is [email protected] I'd love to chat
the experience of not knowing is very isolating

Piffle, I'll email you directly as you suggest - thank you. My DD has really struggled to gain weight, and she's tiny, and has no strength. I just want to know WHY, and I realise that it can take time to work these things out, and I'm bad at being patient!

Wispa, you just want to know what you are dealing with so that you can deal with it. That isn't being impatient . I hope that you get answers quickly, and I!

we can compare weight gain! I have dds red book still
I was obsessed with her weight gain
Oh the day I gave up worrying about that was BLISS
But it is hard
I'll await email and answer as soon as poss. Prob not tonight as taking ds1 15yrs out to dinner for treat.
But def tomorrow when ds2 18mths is napping!

hello there my son has developmental delay hippotonnia and mild autism, they told me he would never be in a football team or do ballet or yoga.. he had reflux and colic and weak muscle tone which is the hippotonnia he went to portage which was fantastic taught him to crawl up stairs, we went to soft plays every two weeks and physio monthly it all helped, then o.t and slt. [sppeech therapy] and now we do a gluten casein free diet and a dan protocol as he got ill on wheat and got allergies to it and eggs and nuts we also do a sonrise program for play and he is now getting better, don't despair lots of people on this site have loads of knowledge and you are not alone, we are all here...genetics can do photos to see if any dismorphic features to do further tests.....one thing i have learnt is don't concentrate on the future focus on the now, ask for genetics to do more tests now complain to the director general it gets results.. you need to know more....

Portage is a new term to me - I don't think it's been mentioned to us yet by any of the professionals we're dealing with. I'll find out more about it.

We're waiting for an appointment with community physio, and we've also been referred to a community paediatrician for developmental assessment, so waiting for that too. (Am unclear why DD's hospital-based paediatrician can't do this, but there we are.) And we're seeing the feeding team - SALT and dietitian I think - at the beginning of Dec.

Is there anything else that we should ask for at this point?

I would definately ask for Portage, for us it's by far the best therapy we have. DD2 responds the best to this. A combination of Physio/OT/SALT is also great. All these therapies together should bring your DD2 on leaps and bounds.