Anyone else with a SN 1 year old or baby?

[smilesintherain]

Hi,

I have posted on this board occastionally and have found it a great source of information and advice. A lot of people on here seem to have children older than my ds (12 months), mostly due to symptoms emerging later/diagnosis occuring later. I was wondering if there anyone else at this early stage with a child who is very clearly SN? My son has had very obvious neurological symptoms since 6 months - movement disorder, seizures, developmental delay. We have no diagnosis and have been told we may never get one.

Seeing how many people seemed to have typical development at this early stage I am extremely frightened about where the future is going to take us.

Its a really tough age for milestones and I am watching all of my antenatal group/friends babies literally run rings around my son, who can't even bear weight on his arms. Life has been turned upside down and because his condition causes him pain I have been unable to return to work and I am not sure if I ever will. The transition from full time mum to full time carer is starting to become apparent and its a scary one. He is our first baby and we have been told this condition is most likely genetic (despite a terrible birth).

I guess just having a bit of a wobble and wondering if anyone else is at the pre nursery or school stage? I am sure things will start to settle for us, but we are still at the stage where not many conditions have been ruled out and we have no idea where we are going to end up. I just wish there would be a moment where I don't run scenarios through my head or obsessively worry about him and the future. Maybe there never will be - thats just what it means to be a mum!

Lots of us have been there - a lot of folk on the cp thread have babies that have been obviously disabled since birth. Dd2 is older now, but was discharged from scbu with full therapy team. It always makes me chuckle when I explain she has had a slt since she was born.

I would say the first two years are absolutely the worst. Dd2 was awarded hr care at 6 mos, but was not officially dx until 2, as they just preferred to use the developmental delay label. She hasn't had sz since the neonatal period.

This board does get used a lot by asd parents, which is why it seems that the kids re older, but there are those with physical, neuro and genetic stuff going on from birth too.

I used to think that once dd2 was 5, I would have a pretty good idea of what lay in store. She changed soooooo much between 2 and 7 (biggest developmental strides around 3 - 4, for sure) that none of her early therapists would believe how able she is now. We were told she probably wouldn't walk or talk, and she does both. At 2 we were pretty certain neither was going to happen, and our house was chock full of physio equipment. She essentially screamed for the first two years, and her muscle tone was so high she could only coordinate a swallow to feed at night, so I became largely nocturnal, and set alarms through the night to feed her. She just screamed during the day, and choked if we tried to feed her. It was pretty grim.

Anyway, just wanted to say, we are around. When dd2 was little I used the special kids in the uk forum a lot. It has more kids with physical, genetic and neuro disabilities, and because a lot of the issues are obvious straight off the bat, it has little kids too. They are also great for sn meet ups, depending where you live - we went to a few, and they have an annual camp, too, chock full of families with every sn in the book.

Ask locally if there is an sn mum and toddler group, too. We went to a group every week from when dd2 was 6 mos, and it really helped to get out. I went to nt groups too, but dd2 usually screamed non stop, and it was definitely more stressful, even though my friends were great at ignoring her.

Hopefully someone with now littlies will be along soon, but, those of us with older kids with cp and genetic stuff have all been there. It is hard. But it does get easier, I promise.

Be kind to yourself x

Hi, my ds will be 3 soon but at 1 year he didn't move, couldn't sit on his own, didn't talk, point... Now he walks, talks about 20 words and started joining two words, he points and sings and is lovely... So don't give up hope, last year we were convinced he will never talk and unsure about walking... Also not diagnoses so far. For me it's been very helpful to go to sn groups rather than regular baby groups, I just couldn't take it anymore the differences were so huge. Take one day at a time and be kind to yourself - there are many of us on the same boat.

Hello, I have a 27 month old ds, he has gdd, gross hypotonia, mildly dysmorphic features, no speech, swallowing problems and recurring chest infections. He was first assessed when he was 7 months old, and the SOGs done at the time, put him at the level of a 1 month old. He sat at just over a year, crawled at about 22 months, has recently taken some independent steps, but is more stable with a walker.

He goes to a sn nursery (with me), and sees a SALT, physio, ot. he has portage and is about to start hydrotherapy.

He has had an mri and various genetic tests. His geneticist thinks it very likely that he has a genetic condition, but whether we ever get a diagnosis, who knows.

When he was 10 months, I started a thread on here asking for a handhold on the way to getting a diagnosis, there are a few of us on there with young dcs, who are all in a similar position of waiting and tests, and trying to work out our way through the system of support. It has been hugely helpful to me, and is a great place to have a vent, worry and just get things of your chest. We are here if you fancy joining us

I found between 10 months and 18 months really hard, there was a lot of testing, a lot of unknowns and a lot of watching other peoples children hitting their milestones, whilst ds just seemed to sit and cling to me. I felt very alone. It is also so overwhelming having to suddenly find your way through the system, it is a real learning curve. There are so many helpful and lovely people on here that it has been my life saver.

Hi, another one with an older child, but i can so remember that 1st year when it was gradually becoming more apparent that our precious baby wasnt like the others & missing all those mile stones.
10 yrs later we have a different normal now, he still isnt the same as his peers but he is still that presious baby... just bigger & stroppier
DS2 was born at 28wks & it was obvious from early on that he would have some long term disabilities, it is hard watching the emerging disabilites but it is all the more amazing when they do achieve.
I ahve learnt not to compare, i avoided my old antenatal friends for a while & went along to the local SN preschool mother & baby group at our local childrens centre. I am still in touch with these friends, our babies all have different dx, some have no dx & all have different abilities but we all "get it" IYKWIM.
Worrying about the future, yes that is just a mums job but we have different worries with an uncertain future.
Remember to take care of yourself too, you can only do the best for your ds if you are well. Do you ahve any respite at all?
What support do you have for you?

Thank you all. I will definately look at the Special Kids in the UK forum, as it would be so amazing to meet others in a similar situation - I am finding baby groups pretty torturous.

We qualify for a few hours of respite care, but the carers we keep getting have loads of SN experience, but have never worked with babies. Its not really respite at the moment - but I guess if we get the right carer it could be amazing. We get 6 hours per week. DS barely sleeps and I could really do with being able to leave him with someone. My husband works full time, but is fantastic at the weekend, so I am lucky in that respect. Sat mornings are my main break as I know he is totally safe/happy with his dad and they adore each other.

Hazey - I am already on your thread! Sorry, I changed nickname (MumtoJackson - not that I think anyone who knows us would be on here, but decided to be more anonymous. Makes it easier to put my rants/hopes/fears on the internet!) Thank you for starting it, it has been a big help and for sharing more of your story. It really helps to hear where people were with a child of this age.

Spent 3 hours in hospital this morning trying to get blood tests done - several attempts, 3 doctors and not a drop of blood. Great. I have the incredible veinless child! They only got the last load of bloods as he was under general anesthetic.

Feeling a bit better today. Its all very up and down at the moment, as we just seem to aquire symptoms by the day, then he suddenly stabalises for a bit. We should get a load more results soon. Its funny to think about when we first heard about some conditions he could have. Our first response was 'please god don't let him have that.' Then you learn about other things if could be and the goalposts completely change. Suddenly that terrible condition doesn't look too bad at all. I am just praying for something that is non progressive and that allows us to medicate the painful part of his condition.

We can't get bloods out of dd2 either - she spent so long canulated that they have pretty much destroyed all the usual accessible veins.

Hope you find a local group x

snap on the veins! dd1 has had medical needs since birth and I remember being the only one with a baby at sn group, now I go to the sn group and find it so helpful and am also on here asking advice on asd type stuff (it emerged she also has a learning disability )Am also onthe bumpy path thread.

Totally get the different goal posts thing, when DD was diagnosed with the first condition (genetic)at ten days old I remember beig so pleased she had it, even though it is pretty nasty at times but at least it was one she could live with and that by then was all I cared about. I think this in a funny way made her later developmental issues easier for me to deal with. Not that I have dealt with them fully, its still good days and bad days tbh.

For blood tests I always insist on the phlebotamist to take the blood. She daily takes blood out of non existant veins in SCBU & is the only person i have found in 9 yrs that can get blood from ds2 on the first attempt.

Hi, my DD is 2.8 with GDD. I remember how incredibly lost I felt at her first birthday when all of her peer group were rapidly turning into small children while she was very much still a baby (and becoming an increasingly large baby at that). She could just about sit up then but that was all. People still kept going on that she 'seemed fine' but I was coming to realise something wasnt the same as other babies. She is making progress now, walking and maybe even starting to talk. Its a long road and a scary one but you arent alone. There are others on here and there is support and it does slowly fall into place.

Oh Ive just read again - you are MumtoJackon - I remember you from the handholding thread. Sorry you are feeling down and mixed up. It is just v hard some times. Try not to google more than is helpful - there are some truly terrifying conditions. I used to weep just knowing these things existed even if my DD hasnt got them.