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AIBU to be this upset about developmental delay diagnosis

(44 Posts)
LadyDowagerHatt Sat 16-May-15 02:28:03

DD is 2 next month and not walking yet, doesn't really have any words and drools constantly. She is a happy, lovely little thing who smiles a lot, gives kisses, and is making progress, just slowly.

We were referred to the paediatrician, originally for the lack of walking but as we have been waiting so long for the appointment the lack of speech began to become more of an issue.

She has been referred for all manner of blood tests, MRI scan, physio, eye tests as well as the hearing test and SALT referral I already had in place. The paed said she is about 8 months behind and she may catch up but she may always be behind and may fall further behind her peers.

He has not told us anything we didn't know but the news seems to have hit me hard. I think it is the acknowledgement that she does have some issues and all I can do is think the worse that she won't catch up and life will always be a huge struggle for her. In my head I have re-written her future in one day. The paed told us not to think about where she might be in 2 years etc but just to concentrate on her now, which I'll admit I am finding difficult to do. I love her to bits and will obviously support her and push for her to develop to the best of her potential but I feel so upset at the moment. My husband doesn't really understand my reaction and came out of the appointment really positive, thinking at least he didn't identify anything particular straight away - he kept saying at least she isn't been sent for a hip operation of anything which to me would have been preferable as it is something immediately fixable. He keeps focussing on the part around her possibly catching up whereas I am thinking worst case for her development and doubting that is even possible now. I wish I could shake this feeling as I feel like I am letting her down and I am writing her off developmentally - I've already looked up schools with special needs facilities near us.

I think it is the not knowing that is so difficult and I am just filling in the blanks and constantly googling. I know I should be thankful that I still have the same beautiful happy little girl I have always had but I can't stop crying.

Thanks for reading if you got this far!

MrsEvadneCake Sat 16-May-15 03:06:31

It is a shock even when you know that something isn't right yourself. My DS has just had his assessment for DCD and even though we knew pretty certainly that was what it was, it has still been sad and made me upset to see his motor skill development as age 6 when he is 11. I've rethought his whole future in my head too so I understand. We still have an assessment for ASD too to do.

I've had a few days to think and I'm starting to feel less lost. I've googled and read and now we have a plan (treatment with OT, school meetings, physio) it is helping.

flowers because it's a difficult time. There is no right way to feel and we have futures in our head for the DC because we love them and want the best for them and it feels dreadful when things don't look like they do in our heads. Your DD sounds beautiful and now she has started in the system you can at least access support and help for all of you.

munchkinmaster Sat 16-May-15 03:24:08

I think both you and your husbands reactions are understandable. Is he always the more glass half full one. Maybe that's why you work as a couple? Try not to be exasperated with him. Maybe you carrying all the fear leaves him free to be hopeful?

Try not to jump ahead but you have lost a bit of what you had imagined for your child. Its okay to feel sad, to grieve a bit.

sleepywombat Sat 16-May-15 04:01:08

Message withdrawn at poster's request.

Charis1 Sat 16-May-15 06:47:13

just sending you a hug and some flowers

Your little girl sounds lovely. it sounds as if she might or might not remain behind her peers academically, although obviously only time will tell.

of course, the trouble with knowing time will tell, is you can start to wish time away, and not enjoy the time you have first!

Even if she is always a bit behind ( and she isn't massively behind, is she)Academic success is not the most important thing in life. i have taught in a special school for many years, and seen many young people with overall developmental delay grow up it to happy, kind, reliable ,sensible, hard working, very employable young people.

x2boys Sat 16-May-15 07:10:27

Hi my son has ASD and learning difficulties he is five today yey ! The first year after diagnosis was awful .a few months after his diagnosis he also got diagnosed with a rare chromosome disorder thought to be the cause of his difficulties my son doesn't talk wears nappies goes to a special school etc he will always have difficulties but he is making progress albeit slowly he is ]funny , cheeky and we couldn't imagine life without him if you are on Facebook there is a group called my child has global development delay that you may find helpful flowers

Fridayschild Sat 16-May-15 07:24:37

DC2 has just been confirmed as having developmental delay disorder aged 10. It is upsetting. All I can say to you is that if we had known a couple of years ago we could have given him much more focussed help with writing and spelling and sports, instead of putting him through a hard time to do things he will always find hard. And I should not have been telling him off for being a messy eater.... Information is strength! Fingers crossed for you.

duplodon Sat 16-May-15 07:50:00

As an adult, I got a diagnosis of something I knew going to be assessed I would get a diagnosis of... I have also worked on diagnostic teams for families undergoing ASD diagnosis ages 8-12. In my experience and watching others go through it, reactions like yours or your dh's are very common. I was more like you. It is a hard time, go easy on yourselves. You are both trying to make sense of it as best you can xxx

DesperatelySeekingSedatives Sat 16-May-15 09:22:59

Ahhh OP I can completely identify with you flowers its still a shock even with signs there telling you something isn't right.

My own son (nearly 4) has been identified as being on the autistic spectrum and try as I might to not think too far into the future I find myself doing so and it scares the crap out of me. DP on the other hand is full of positivity and doesn't understand why I get tearful and worried. Not all the time just to point out, but yeah sometimes.

LadyDowagerHatt Sat 16-May-15 12:35:54

Thanks everyone for taking the time to comment, it's been a help to read the support from you lovely mumsnetters.

Munchkin - I am usually the positive one in most things, but not this for some reason. Maybe I'm seeing how delayed she is compared to other children and thinking she is unlikely to ever catch up whereas my husband is better at just accepting we are where we are.

X2boys - thanks for the fb site recommendation, I have just joined it.

insanityscatching Sat 16-May-15 12:52:28

The first report is always the hardest because you get a picture of your child's strengths and difficulties. After that all reports concentrate on the progress made from the last report and so seem more positive.
If it brings you hope dd had a developmental age of between 6 and 12 months at two years of age. She's twelve now, in mainstream secondary, in all the top groups, she plays piano and is a very happy young girl.
Ask for a referral to Portage and Speech Therapy as well as physio and occupational therapy. The more help you get as early as possible will improve your child's life chances considerably.

LadyDowagerHatt Sat 16-May-15 13:13:20

Insanityscratching - I can't tell you how much that is just what I needed to hear!!! It has made me cry! Your daughter sounds amazing! It brings me so much hope and while I know it may not be the case with my DD just knowing it is possible to catch up will help me to focus on that whilst I get my head around the alternative that she won't.

The funny thing is, it's almost like she knows she has to up her game and in the space of 24 hours she has started to walk more holding one hand, crawled up the first 2 stairs, and said 4 new words (very unclear but definitely there). When we asked the paed what we could do to help her he said to do less for her. I must admit we were doing things for her and picking her up when she cried - he said she has to get frustrated to then want to do things for herself. It seems like good advice and appears to be helping already.

insanityscatching Sat 16-May-15 13:55:22

Yes and add to that play,talk, sing and read with her. Take her out, show her the world, let her see what is out there. Take her to the park, to feed the ducks, to the supermarket, everything you do already but make it all count.
Have a plan on what you want her to be able to do and work towards those goals. If she has a farm teach her the animals sounds, then the animal names, then count the animals, lots and lots to learn from one toy. Same with a doll's house, name the furniture, teach her up and down, in and out, open and close, show her routines so doll gets up, goes to the loo etc etc.
Get all the help you can but make every minute she is with you count too. It's what I did with dd and it's what made all the difference.

PacificDogwood Sat 16-May-15 13:58:52

Of course YANBU.

Your DD is the same person she was before you were given the result of this assessment.
None of us know how our children are going to turn out.
You have no choice but to take one day at a time, support her and be there for her, and wait and see.

Spend time with her, talk to her, read her books, play with her. Enjoy her smile.

Being referred and investigated will give more information and give you access to extra support to help maximise her potential. Your job first and foremost is to be her mum thanks

BalloonSlayer Sat 16-May-15 14:23:18

My DD didn't walk until 21½ months old and had no words at all at age 2. However she was referred only to speech therapy, not to a paediatrician. Now 13 she is the most athletic of my DCs (not that that's saying much TBH) and frighteningly clever.

All my babies were late doing everything. Talking, walking, crawling, sitting up, rolling over, sleeping through, toilet training, weaning, swimming, riding bikes - all the milestones parents breathlessly report were hopelessly, embarrassingly late. Even getting teeth! I had nothing to brag about, nothing. (They did all read quite early and turned out to be academically good though, but you can't brag about that unfortunately, it is Not Cricket).

I have no idea why my DCs were such late developers. They just are. On presenting my third child to the same speech therapist the other two had had, she said: "It's just something about your children, Balloon."

vjg13 Sat 16-May-15 14:53:35

Of course YANBU.

Do take up all the referrals and help offered, it is overwhelming and time consuming but early intervention will only benefit your child. My daughter was diagnosed with global developmental delay at a similar age and is now 17. She has learning difficulties and walked and talked and hit all her milestones but at a different rate to average kids. She is beautiful, loud, funny and happy! She has made me a better parent and person.

LadyDowagerHatt Sat 16-May-15 19:20:37

Balloon, that is really interesting as my DS has also been really late with everything (but much earlier than my DD so no intervention required). He walked at 17 months and he didn't have any words until about 20 months. So I live in hope that my DD is just on her own curve and we also just produce babies who are late bloomers!

Insanity - our house has turned into baby boot camp now! She has to walk holding our hand everywhere she goes, I have just read her books loads of books and then we played with her brother's farm (she attempted a few more words, hurrah!). I feel much more positive than I did yesterday and we are determined to do as much as we possibly can to develop her (not that we weren't before but it's gone up a few levels now!)

Tizwailor Sat 16-May-15 19:27:44

Message withdrawn at poster's request.

Springtimemama Sat 16-May-15 19:34:45

Message withdrawn at poster's request.

Springtimemama Sat 16-May-15 19:35:24

Message withdrawn at poster's request.

insanityscatching Sat 16-May-15 19:39:42

Yes! dd did baby boot camp, she loved it though because it was attention focused on her. It has paid off as she has got older though because she will practise and practise until she gets it right with no need for input or motivation from me. I think because that's what she knew from being very small became a habit for her so she always got all her spellings right, she always practises her piano, it just became a way of life to her I suppose.

bakingtins Sat 16-May-15 20:02:50

Hi ladydowager my DD is about to turn one and was fine until she was 7 months old when she developed infantile spasms, a type of epilepsy linked to cognitive impairment. She's currently about 3-4 months behind, like you we have no idea whether she will catch up or get further and further behind her peers. We are still waiting to see community paeds for formal assessment of her development delays though she had wall to wall tests (MRI, bloods, urine, LP) around the time of her diagnosis. There is almost a grieving process letting go of your assumptions about their future. I find it more difficult than my DH because I see her with peers all the time and the comparison hurts, whereas he focuses on her as an individual and what she can do. I find the 'wait and see' attitude and the endless waiting for appointments very frustrating when everything I've read says early intervention makes such a difference, but at the same time I panic when anyone treats her as disabled (children's centre suggested we apply for DLA shock ) We have recently started private physio and are going to see neurodevelopmental charity Snowdrop in July, but otherwise it's my cobbled together therapy of baby signing, the sensory room at the children's centre, and a special needs toddler group.
Sorry, that was long and rambling. I just wanted to say I identify with very mixed and rapidly changing emotions about the whole thing. Everyone says it gets easier with time.

SandysMam Sat 16-May-15 22:06:09

OP, your daughter sounds gorgeous, and without sounding glib, some of the happiest people I know aren't that bright, whilst the cleverest people I know aren't that happy!! Being very clever and ambitious can bring a pain all of it's own...she may not be a rocket scientist but at the same time she might not torture herself about the misery of the world or be a creative genius who medicates her overactive brain with drugs or alcohol, joining the 27 club. I hope this makes sense and you can see that there could be problems in her life whichever way her development goes (be it ahead or behind). She is who she is, love her, help her but accept her...she is your beautiful daughter and what will be will be. Stay strong!

cestlavielife Sat 16-May-15 22:56:17

Having all tests come back negative doesn't mean there is nothing "wrong".. my son was undiagnosed til age 12 (microdeletion syndrone).

But of course it is a shock and hard...bit there is support. join the sen boards here. Join local developmental playgroups etc.
go easy on yourself. Ask about tests ordered. You don't have to do them all at once unless medically necessary...if mri is just in case it won't matter if done now or in 3 weeks or months. Or you may prefer to get them all out of the way. She is still your baby

CountryMummy1 Sat 16-May-15 23:56:49

Have you asked for an ENT referral. The drooling and poor speech was just like my DD. is your little one a noisy (snoring) restless sleeper? Does she Mouth breathe? Enlarged adenoids/tonsils can cause speech delay and drooling, and if she is having poor sleep at night due to being unable to breathe well it can cause developmental delays. I should watch her sleep and see x

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