Lives less ordinary - a keeping up thread on our new normal for the handholding thread's graduates

[Firsttimer7259]

I dont know how many of you this will resonate with but I posted a lot on a handholding thread for those in the early stages of waiting for a diagnosis and taking those first steps into the scary world of SN. The thread was started by Hazeyjane and was a real lifeline for me for a long time. It gave me somewhere to let out the fear, sadness and frustration I felt at not knowing what was going on, not knowing what to do, not knowing how we'd go on.

But the threads gone quiet and to some degree I feel Ive graduated into a new stage. The grief is less sharp, the panic is more muted, the support system is not perfect but it is there. So theres less of an urgent need to post, and in a way, less to post about. There will still be tests to take and decisions to make but the pace is easing off and I can handle it better than before. But I miss some of the old regulars and was hoping we could use this thread to keep in touch over the next year.

Just to update on us: DD turned 3 in Feb and we had a lovely (if unconventional party) inviting her main carers over the last year - former nanny, nursery key worker and a homestart volunteer. I was nervous that they might think me strange as I didnt really know any of them but after worrying through much of January about what to do (DDs B-days often get me v blue) I thought more along the lines of what DD thin of as a great party and the answer was inviting the people she loves. And she really did love it. She beamed all afternoon, was played with very confidently by people who know her really well and we had 2 short hours of tea and cake and bubbly that I will remember as the beginning of a new chapter for us. (Aside: they all came and were all really pleased to have been invited)

Otherwise Ive come to the realisation that MS isnt really an option for her for pre-school, she's lovely and getting slowly more able but it has masked for us how very disabled she is as we've just stopped seeing it really. So I had a rather brutal reality check with myself about the fact that we are going to need to go into SN education eventually and we might as well get on with it now rather than try to stay MS longer. So we've applied to an SN nursery attached to an SN school and will know by end of April what we will get.

I guess I have finally understood that we are the parents of a severely disabled child and thats not going to change. We are in Amsterdam. I am no longer looking to get back on the flight home or trying to board the next flight to Italy. I am now looking for a really cute old townhouse on the canal fairly near the Van Gogh Museum. I hope I find it.

Firsttimer, I wonder if you might possibly post on this thread and link the OP to your handholding thread, as I think she might find it helpful at her stage of the process. It sounds like exactly what she needs and whilst you say it's not very active these days, she may well find it helpful to read the historical posts.

I would link her myself, but I don't know the thread title.

Thanks moosemama, good idea.
The original thread is: www.mumsnet.com/Talk/special_needs/1216322-Is-anyone-else-starting-out-on-the-road-to-a-diagnosis-Fancy-holding-hands-on-the-bumpy-path/AllOnOnePage

Theres a follow on thread: www.mumsnet.com/Talk/special_needs/1641269-A-support-thread-for-the-undiagnosed-hand-holding-through-the-wilds-and-wonders-of-the-unknown

Also should have said any newcomers are really welcome (and sorry for poncy title - am a little maudlin' )

Im keen on just keeping up with a group of people roughly where I am in this journey, Ive tried to describe that above - its no longer just starting out but a long way from being an old hand. I have found not being alone and having people to run experiences past really helpful so many times

Thanks moosemama, good idea.
The original thread is: www.mumsnet.com/Talk/special_needs/1216322-Is-anyone-else-starting-out-on-the-road-to-a-diagnosis-Fancy-holding-hands-on-the-bumpy-path/AllOnOnePage

Theres a follow on thread: www.mumsnet.com/Talk/special_needs/1641269-A-support-thread-for-the-undiagnosed-hand-holding-through-the-wilds-and-wonders-of-the-unknown

Also should have said any newcomers are really welcome (and sorry for poncy title - am a little maudlin' )

Im keen on just keeping up with a group of people roughly where I am in this journey, Ive tried to describe that above - its no longer just starting out but a long way from being an old hand. I have found not being alone and having people to run experiences past really helpful so many times

Thanks Firsttimer, I have posted the links to their thread.

I completely understand why you want to continue your journey with those who are at a similar point along the way. It really helps to know there are people out there who understand where you are coming from and how you are feeling.

Just realised I didn't link you to the thread I was on about - doh!

Apologies, typing through an emerging migraine and three very noisy dcs.

Hello FirstTimer, I'm really glad you started this thread again. I looked for the one that Starfish Enterprise started, but it went so quiet, I thought you had all gone!!

I often see posts by people just starting out, and think about the bumpy road thread and think it would be good to start it again.

An update - ds is 2.8, he now has a 'possible diagnosis' of Kleefstra Syndrome, and fits a lot of the criteria. We have started the statementing process, which so far is going well, he is starting MS preschool (as we sort of fell out with sn preschool) in April, with full time 1-1, and regular SALT, physio and OT in the setting. We are looking at a SN primary, although there is also a v good ms primary with sn unit in the school, so we will consider that too.

Ds has had a lot of medical problems recently with a couple of possible seizures, the discovery of a small hole in his heart, a problem with the sa node of the heart which needs to be monitored. We are waiting for some further investigations of his lungs and another sleep study.

Development wise, he has made some real progress lately, mainly in the area of communication, he is still completely non verbal, but really has a desire to communicate, and is signing a lot more, his understanding has also improved. He recently had a sensory profile done, which showed quite a lot of sensory issues, which we think contributes to his head banging etc.

On the whole things are pretty good atm, after a very hard couple of months with ds being very ill.

First, I love the sound of your dds birthday, I am hoping to do something involving fire engines or helicopters for ds's 3rd - he is obsessed with both, one of his first signs was helicopter! It is really lovely to hear about your girl, and the progress she is making. I hope all is ok with you and your dh.

I hope some of the old bumpy roaders are around, and some new people join us too.

Hi there. Thanks for the PM, Firsttimer. I would never have found this thread otherwise as for some strange reason it does not appear on the special needs board for me! Maybe it will once I've posted on it?

So for an update, not great news I'm afraid. Early January I took the twins for an eye check as they are at higher risk of developing a degeneration of the optic nerve. It turned out that DT1 had cataracts in both eyes. So we have had surgeries and now have the daily chore of contact lenses for a 9 month old. I have no idea what to expect for in regards to his vision in the future. I feel happier ignoring those thoughts and staying away from google for now as there is not much I can do about it.

Since the discovery of DT1's cataracts we have started telling people in RL that the twins have the same condition as DS1. A lot of friends have come out to support us and I really appreciate their efforts, but I still feel so lonely because they really have no idea what I am going through.

DT1 is developing much like DS1 in that he is obviously hypotonic. However he is a little more advanced than DS1 at this age and prefers to play on his tummy (with DS1 tummy time had to be enforced and was not a pleasant experience). DT2 seems to be ok, probably just scraping along the lower end of 'typical' on the milestones, but they are both getting quite behind in speech.

DS1 has started at a MS kinder with a full time aide. He LOVES it and the other children are very accepting of him. His speech is coming on in leaps and bounds. He also gets the stimulation that he needs as I am so busy with the twins at home.

hazeyjane Sorry to hear about the medical issues you've been having. Regarding speech, the desire to communicate is a great launching place. At 3.6 a school entry report said that DS1 'has no functional language' but it was evident that he really wanted to talk. Six months later he has so many new words, is communicating in 2-3 word sentences and (at times) can be understood by other adults and children.

firsttimer starting MS kinder has made me realise just how different DS1 is. It is hard to see, but I'm also starting to accept it and let it become the new normal.

Hi, its really nice to hear from you both. I do wonder how everyone is doing often now that theres less posting on here.

Im glad your DS is better again hazey It takes lots of time to recover yourself from these difficult periods - I feel like I run on adrenaline for a while and then when she's better I am just exhausted. So I hope you are managing a bit of recuperation yourself. The signing sounds excellent. Its so exciting to hear he's trying to communicate. Its something I long for so much. Like PJs said the desire to communicate is really so incredibly important - our girl also wants to interact and it give me hope that one day we'll hear her speak.
Im sorry about the cataracts PJs I hope you are managing to keep your chin up somehow. Im glad your friends are coming through for you. Its so important to feel like there is support out there somewhere. Im glad the nursey is working out so well for your firstborn. Its lovely to see them enjoying themselves with other children.
We are doing well, the DLA has made a huge difference to the money worries that plagued me for the whole of last year. We spend it on extras really but I find that some babysitting and the occasional night out really sustains me through the hard times.

Im getting more proactive about funding. We have a homestart volunteer who plays with DD 2 hours a week. Lets me clean, sleep, do my taxes, whatever while DD enjoys herself with someone who's got fresh enthusiasm. I thoroughly recommend getting your hands on any free extra help you can. The two hours doesnt sound like much but its made a huge difference practically.

I am going to investigate funding for some sort of family break and for an ipad. DD plays with an ipad at an SN playgroup and the apps are amazingly good in terms of sustaining her interest. The OT is willing to vouch for it as a piece of SN equipment! And maybe we will be able to have a break thats not visiting family next year with a bit of funding so we can afford some childcare while we are away and get some rest ourselves. I keep returning to thoughts of wanting a second child but feeling that it might be the straw that breaks the camels back with my H's MS. Will just sit on it for a while and see whether it will go away...

Hello again.

Good to hear from you pjs, also sorry to hear about the cataracts, as you say, concentrating on the now, not thinking too much about the future, and staying away from Google sounds like a good plan! Glad that your ds1 is getting on well at ms. I am so nervous about ds starting after Easter, we have been going to the setting, when it is empty, so that he is familiar with the room, and his 1-1 has come round to the house, so on that side I feel quite relaxed, but I am worried for him when there are other children there. He is quite nervous around children that are the same age as him, or he just blanks them, he is far more relaxed with adults (if he knows them really well and they make him laugh!) There is a meet the parents and other children session next week, I am terrified, and may well be posting on here in a shaky state afterwards!

FirstTimer, we got funding from the family fund for ds's iPad, we had it within 2 weeks of applying. It has been amazing, he loves it, and now he is going to have training in how to use a 'talking app' which we are looking at funding to get (it costs a few hundred pounds). I find it amazing, that he has learnt so quickly how to use it, considering it tools months of hand over hand to get him to stack bricks!

No idea if any of you guys will see this but here goes....

Sorry for the long silent absence. Things have been difficult here mainly because DH is still working away mon-Fri and DS1 is becoming harder and harder work both to keep safe in the day and not sleeping.

Other major news is that DS1 now has a diagnosis of periventricular leukomalacia leading to cerebral palsy.

I'm q cross that it took 4.5 years to get him an MRI and a diagnosis that could have been made so much earlier and made accessing help much easier. But relieved that we're not faced with a degenerative or genetically inherited condition. I do feel sad that my lityle boy got brain damaged at some point though and I wonder if the "could I have done something to prevent it?" feeling will ever go?

Be good to catch up, can't promise to be overly reliable I'm afraid as often I get no evening at all.

Hope you're all well xx