Struggling to deal with emotions re child with SEN

[Dahliaxnoir]

Hi all,

This is potentially outing so name change

I'm sorry this is long but I'm just so frustrated and sad.

I'm posting in aibu as I don't know if my feelings are normal.

DS is three at the end of next month. He had a rare genetic condition (16p11.2 microdeletion) and we strongly suspect he is autistic, the wait is 20 months though so we won't know for sure for a little while ( I am tempted to pay for a private assessment but I don't know if the NHS recognises them and I'm scared of paying 2k plus and be wrong and he isn't autistic but anyway)

He can't walk at the moment. There's nothing physically wrong with him and there's no reason he physically be walking but the physiotherapist believes it may be a sensory issue for him and he'll just walk in his own time. They don't have a time scale but he hasn't progressed any further in a year so I don't know what's going to happen with him and it's so frustrating because he can walk, he just doesn't seem to want to and he's so heavy. He's in a size 4-5 so carrying him everywhere is hard but we can't explain that to him or even encourage him to walk as it causes a melt down.

He can't speak apart from a few words (which he can't say properly and tends to regress with them) so he can't tell us about his day at nursery, he can't communicate his needs, he can't really do anything vocal due to him being non verbal and it's sad because he's at the age where he should be able to tell us things and I feel like we're missing out on the cute silly things toddlers say because even if he talks in a few years (hopefully) we will never get that back.

He doesn't like to socialise. When I go to pick him up from nursery every single time he is as far away from the other children as possible, in his own world doing his own thing. He gets distressed if an unfamiliar child goes near him and even his sister isn't allowed in his space.

It's really stupid but I feel like I'm grieving which I'm sorry to parents who have lost their children, I don't mean any disrespect. I just mean I feel like I've lost out on my child having a normal toddlerhood, the exciting times they have and just having a normal toddler and I must stress I absolutely love my son, I couldn't love him more but the emotions are sometimes a little hard to bare and I find myself crying most nights.

Can any SN parents tell me if it gets better or at least will I be better? Will I be able to deal with my emotions and be better for DS?

Give yourself time. Personally I spent a few days post dx crying, a few weeks finding out everything I could, and many years learning about and teaching my son. It got better, slowly.

It does get better. It becomes your new normal.

I found what helped more than anything else was finding a community of other people with similar issues - not necessarily the exact same diagnoses, but something of similar severity. People who know not to judge because they get it. Who understand what you say and do because they've been there. Just not having to explain and justify everything helps!

I'm so sorry you're having a hard time. It's totally normal to grieve the life and child you expected, but not everyone will understand that.

For me, I found acceptance through Facebook groups and the home education community (my kids can't do school, although they don't have any obvious disabilities to outsiders). A bunch of people who get that life isn't going where you expected it to go.

That fucking poem about Amsterdam though.... it's put me off visiting irl!

Amsterdam is lovely, they were very patient with autistic DS.

Agree about that bloody poem though. Prime "shut up, we don't want to hear how you feel, have a sticking plaster" territory.

I think it is totally normal to grief the life you thought you would have, from cute little toddler sayings to blossoming first friendships whilst you and other mums are having coffee…
wishing that things were easier and normal… none of this means that you do not love your child, and you do not have to feel guilty about it.

I don’t have experience with my own, but I did teach for many years and most of those were children with SEND, often neuro diverse.

When you are expecting a child and have a baby, you naturally wonder who they will resemble, how tall they’ll be, what their interests will be and you anticipate going through the stages of their childhood, good and bad, interesting and boring and observing your child growing into an independent person.

If you have a child with SEND, those milestones might not be met and the stages you expected will be different. It’s not wrong or disrespectful to feel as you do. In a sense, you are grieving for the child you thought you’d have and had aspirations for. It does mean adjusting your expectations and celebrating the achievements of your child, however small they may be and how er far from what you’d expected and hoped for.

You love your son and you will celebrate his achievements, even if they’re far removed from those of other children the same age. I can’t tell you that it gets better. I think you just know that you are doing the best you can for your child, accepting him and celebrating him, whatever and however that may be.

Not a parent, but a special needs teacher for over a decade...just wanted to send a virtual hug, I am sure it's bloody hard.

Have you been in touch with Unique? https://rarechromo.org/ I used to recommend them to families and they were generally positive about the support and information they could get.

You are going through a difficult time, your feelings are very normal. You don’t know how your
son will progress, your future is
unclear.

Hopefully you will find some local people who are going through
similar so you don’t feel so alone.

My son has 16p13.11 microdeletion have you joined Unique ?
Its an on line charity support group for families dealing with rare chromosome disorders
There is also a Facebook group.called 16 VIP, " We are family"
I don't know what the future holds for your child as the deletion can vary massively in how it affects the individual
I van tell.you that the early days are hard but it will.get better in that you will.learn to.accept your child for who they are and learn to cope with whatever challenges lay ahead.

Hi, I'm sorry you're finding it so hard. Don't beat yourself up about your feelings.

Sounds like your child is at mainstream nursery? Is there any other more tailored provision where you are? Have you looked at your local authority's Local Offer page? There will be hopefully some parent groups to reach out to. But you sound like you also need to get more suitable support, like occupational therapy and SALT for your little one.

I really wouldn't spend £2k on a diagnosis. In my experience it added very little and leaves you even more adrift than the NHS diagnosis.

And yes its normal to feel.grief for the child you should have had
I'm 13 years in now and my son is severely autistic with severe learning disabilities, but he's a very loved child and we dote on him it becomes your new normal.

Hi,

Yes he's in mainstream nursery but he is under a neuro paediatrician, physiotherapy, speech and language, he has a specialist teacher at nursery who hopefully will be referring him to a education psychologist in the new year so we can get a ECHP in place. I've also spoken to a specialist health visitor recently due to his violent behaviour with his sister so we've been asked to fill something out to hopefully get a clinical psychologists input and he's on the ASD pathway.

I've had a look on the council website but I can't find any sort of parent groups. I am part of unique and I've joined a few fb pages.

Yeah I was thinking it may be better to just wait for the NHS assessment, it should be before he starts school which is what I wanted really.

Thank you everyone for your replies, I know I'm being a bit silly. It just seems so hard at the moment.

It gets easier op. I’m ten years on from where you are and I’ve grown in so many ways and adore my ds. He was speech delayed but if your journey does include new speech later I promise it can be just as cute and exciting as it is at 2. It was very very hard, but my life has just altered to accommodate.

I would really recommend Joanna Griffin’s book Day by Day. It’s an incredible roadmap for SEN mothers on emotional coping and how to go on. She’s both a SEN mother and a mental health practitioner.

A couple of ideas for finding your tribe locally.

On fb search for EHCP IN [name of your county]. This will bring up your local EHCP group and they will guide you to SEN parent support groups.

Look on the local authority webpage for SEN - “the local offer”. They often list local charities.

PS you are not being silly. The early months of SEND parenting were some of the hardest I’ve ever experienced.

Unique have regional groups I don't know if you are aware of that?there are several people I have met through unique who are local to me.

I get you.
When my youngest was born it was obvious we were going to need a lot of medical interventions. When he was about 1yrs old it hit me hard we couldn't do 'normal' things like toddler groups, baby gym.
I hated medical appointments because it pointed out his deficits.

I felt lonely. Worried.
A friend sent me a diagram about grieving for what you thought it was going to be like and having to make the mental shift into scary uncertain place. I wish I could find it as it helped me realise I wasn't awful for being scared/anxious/wanting what other mums I saw were doing.

It's overwhelming. And so tiring physically and mentally so please be kind to yourself.

At this stage there's so much development measuring it feels pressurising. I think that feeling reduces as they get older and you know their strengths, weaknesses, capabilities.

Don't feel guilty about it.

Do find support. There are many parent carer support places to help you. It gets easier - still rollercoaster moments. I think we channel our emotions better. But it's always emotional because we love them so much and we fight so hard for them.

Seek out support from other parents of children with additional needs, search in Facebook groups and around local area. As you can't know how your child will develop it could be that some milestones are delayed rather than not there. Some children are older when the reach milestones and some milestones may need adjusted into smaller steps. It's very common to experience a grief process as things are not as you had imagined, don't feel guilty about this, other parents of moderate and complex needs children say the same. In the meantime an occupational therapy assessment might help with advise in handling and managing around the home and help find resources and activities that can help and be of benefit to your family.

I think "grief" is the right word and it's not surprising that you are feeling that way.
We paid 2k for an autism assessment and it was very useful but our son was much older and we didn't have 2 years to wait. If you do go down that route choose an organisation that follows the nhs methodology and it will ve accepted (in your position I'd probably wait and use the 2k for something that will benefit your son's communication).

One thing though - if you think he's autistic, parent him as if he's autistic. It won't hurt if he isn't and will help immeasurably if he is.

You need to make a conscious effort to resource yourself so that you are able to stay emotionally regulated for your child. Long term.
You need to make time to look after yourself- physically, emotionally, spiritually- in order to stay strong.
This might look like getting out regularly with friends, doing a 'hobby' regularly... book club? sport? , regular downtime- magazine, coffee out alone....looking after yourself with yoga, warm baths, regular early nights, good food... ... and it might even involve some kind of support group or even counselling- a place for YOU to vent and be heard and validated, among people who get you.

Both my DC have SN, one low functioning Asd and an underlying chromo disorder. The age you are at is the hardest. It is an age when difference in development often become obvious, when you don't know what the future hold. What will he learn, what won't he learn? Will he ever talk etc. I had 1-2 very dark years around that age. I think I was grieving the life I thought my child would have and that my life, as I knew it had gone. It is very common.

but I can assure you that life will become better. There will always be challenges 'normal' families don't have. Mine is an older teen now and there are a lot of things we cannot do. I can only work a few hours so money is consistently tight as well, a lot if friends dropped me along the way, even family turned away fro us. But, you will find your own ways in life, to deal with him, you will find things you will enjoy doing and that will bring back joy (I am sharing a couple if hobbies with my eldest now). even though their development is different, they are still constantly learning.

I found some local support groups for SN parents. I found the other parents are the only ones who get it and I made friends there.

life isn't any less now for us. Just different :)

PS: I would not spend money on a private assessment if you are on the pathway anyways. It's £££ and by the sound of it, you will get an NHS diagnosis. A diagnosis in itself rarely brings extra help and since he is young, I think this would be wasted money at that point (he is still very young).

Your feelings are completely valid. In answer to your question ‘does it get better?’ I found that surrounding myself with other Sen parents made things a lot easier, it no longer feels as isolating anymore.

Look for local support groups and / or facilities that are Sen friendly (your council may have a ‘local offer’ section on their website which will list all local accessible clubs / attractions ect, this has been invaluable to us. Also look for any local facebook groups for Sen parents.

My child is now at a specialist school which has also helped a great deal, I'd also recommend starting the EHCP process as soon as possible (if you’ve not already done so).

I understand OP, it's so hard. I find it helps massively to be around other parents with similar challenges.

Is there are support via hospital for you? My dc has a physical disability and the service has a nurse counsellor on staff. I’d also recommend joining support groups online and going to meet ups.

SENCo here - I’m surprised that an EHC needs assessment hasn’t already been started! You don’t need to wait for an EP assessment. What I’d advise is for you to contact the LA Sen team straight after Christmas and tell them you want to start an EHC needs assessment. That will trigger requests to his nursery, SALT, Paediatrician and anyone else involved in his care. If it is agreed that an EP report is needed, they will commission one.
You can do this!!