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To think you can't really enjoy life with a SEN child.

(140 Posts)
Onetwothreee Tue 05-Mar-19 15:50:42

I know it sounds awful.

My DS is 2 and is on the list for an ASD assessment but that's still quite a long wait away. But each day that goes by gets more difficult to cope with him.
I don't enjoy many aspects of life any more because the daily struggles are just getting too much. I feel like realistically you can't enjoy parenthood in the same way as parents of NT DC.
I look at my friends with their NT children and I am so envious. They seem to be able to do so many happy and enjoyable things. They can't really relate to the struggles I have with my DS as they just don't understand, not matter how well they mean.
I am just so tired of the meltdowns, the constant appointments, the being trapped in a rigid routine. I have no social life any more as I can't take DS with me to coffee shops or anything like that and as I have no family to help me I have to do it all on my own. People have stopped inviting me out.
I am depressed and have sought help and am on medication. Unfortunately the medication gives me unpleasant side effects so I end up spending the days feeling unwell instead of sad.
It all just feels hopeless, like my DS will never be easy and I will struggle for the rest of my life with him.
I feel robbed of the opportunity to enjoy parenthood.

WarIsPeace Tue 05-Mar-19 15:54:09

It's normal to feel like this at least some of the time. Part of it is grieving for the child and the life you thought you were going to have imho.

I really wish I could use a babysitter instead of having to rely on the unreliable dad (ex) if I want to leave the house unaccompanied. It is hard.
But I couldn't honestly wish my DS was different to how he is, he's amazingly bright and funny and very logical. But with that comes the communication difficulties and crippling anxiety.

PooleySpooley Tue 05-Mar-19 15:58:13

Have you ever read the poem “Welcome to Holland”? ....

CarolDanvers Tue 05-Mar-19 16:04:46

I understand what you're saying but I don't agree. I have two children with additional needs and yes it's been back breakingly hard at times but we have made a life and it's great, we have some wonderful times smile. I'm a single parent so doing it all alone. Tbh it all got better once I got rid of their Dad he made everything much harder. It sounds trite but you do get used to it and even find joy.

Fairylea Tue 05-Mar-19 16:05:30

You have to change your life and your expectations, yes.

You might not be able to go to coffee shops, or busy places. You might (as with our son) never be able to listen to music around him because it will set him off - when previously you used to love music all the time.

But you find new and different ways, different things, different experiences and especially as they become older you learn to understand them more and things become easier in some ways - some ways harder- but you know them well enough to predict a lot of behaviours etc.

It sounds naff but there is joy in every day and every life if you’re not looking for something that you can’t find.

(My son is 6 with asd and learning disabilities. He was diagnosed at 2.5 and attends complex needs school).

SinkGirl Tue 05-Mar-19 16:07:42

I totally understand - my twins (2.5) have both been diagnosed with ASD In the last few months, amongst other things. Seeing my mum friends getting on with normal life is so hard.

Applying for DLA and getting my boys into nursery has been a massive help, just two mornings a week but it gives me a break and time to do things for myself which I haven’t been able to do.

Have you been referred to portage?

Hiddenaspie1973 Tue 05-Mar-19 16:08:01

Crikey that poem would annoy me if i had a child with SN.

PooleySpooley Tue 05-Mar-19 16:11:00

@Hiddenaspie1973

Think it’s like Marmite tbh

WarIsPeace Tue 05-Mar-19 16:14:54

I hate the Holland poem too. Trite shite.

smartiecake Tue 05-Mar-19 16:15:56

I felt exactly the same. Agree that you have a period of mourning and my son was also incredibly hard work for a long long time. We could not go out to places or do 'normal' things. But my son has got easier as he has got older. He is now 11 and life is much easier. We know what we can do now and what we can handle. We went to some SEN groups and from that i have made friends with some other moms of ASD kids which has helped massively. It is incredibly difficult OP. Try and find some groups to go to. Dont beat yourself up about it being hard and being shit some days. It is and we all muddle through. Take one day at a time. I hope you can find some support but it is very hard.

smartiecake Tue 05-Mar-19 16:17:04

I also hate the Holland poem. I understand the sentiment behind it but it didnt offer me any comfort. And I have been to Holland on holiday it was bloody brilliant!

PooleySpooley Tue 05-Mar-19 16:19:04

@smartiecake 😂

LonnyVonnyWilsonFrickett Tue 05-Mar-19 16:22:40

I know it sounds like trite words on a screen but it does get easier. Once you have a diagnosis the amount of appointments you have to do tail off, your son will continue to develop and grow, OK maybe not at the same pace as other kids but things will change. You'll have to adapt, but you'll find your own way. So your son doesn't like coffee shops - he might grow to love nature, for example.

It is so, so hard though especially at the beginning. Please do try the SN boards here which I think actually saved my life 10 or so years ago.

elliejjtiny Tue 05-Mar-19 16:27:19

Completely understand. I know it's hard but I try and avoid thinking about the things nt children do that my ds can't. Is your ds getting dla? If so could you use some of it to pay someone to go with you somewhere that your ds would like. I do that sometimes. My ds always seems to be upset or having a meltdown about something but he really likes the sensory area at a softplay near us. I try and role in someone to help me take him there and take loads of photos of him being happy so I can look at them and remember that its not always bad.

WarIsPeace Tue 05-Mar-19 16:28:02

Second the SEN boards on here, they have been a huge support in various ways, under various names these last few years.

Mine is now older primary age and some things are even harder but some are easier. And he has a good understanding of his difficulties (which is both useful and worrying)

crosser62 Tue 05-Mar-19 16:28:06

My ds1 has never been formally diagnosed with any LD, however, I know in my gut that he does.

I know this for a million reasons but mostly because I had a second child.
They are like night and day.

To my eternal shame, I feel so very grateful for my second child because I now know what it is to have an “easy” child, I now know what it is to enjoy time with my child, to feel happy and look forward to him coming through the door and coming out of school.
The joy of just picking him up from school and not be taken to one side so that teacher can “have a word” every day about issues.
To do normal things that friends with kids do, go to a shop, cafe, play places, the cinema without having to leave after a few minutes.
Count down the minutes until bed time so that I can breath and think without that knotted hard stone feeling in my gut all the while.

If no one in the know agrees that my ds1 has a diagnosable problem, then it must be that I am a plain, good old fashioned shit parent.

TruJay Tue 05-Mar-19 16:28:40

flowers for you OP. I totally get where you are coming from, DD - now 5 - has autism and god has it been a hard slog, I had such a wonderful life with DS (firstborn) and DD up until she turned 1 and all this began. I was totally nailing being a mum to two children, I was elated, it was a wonderful time until everything changed. Nothing has been easy since, I could literally fill a 1000 post thread by myself with my story!

It does sound awful but unless you live it, you just can’t understand. You are grieving for the ‘normal’ (I never hated that word until I had a child with SEN) you were expecting and now do not have. Daily life is a struggle, everyday tasks take ages. DD once screamed for almost 5 hours because I touched her feet! You can’t touch her feet or ears!!

We seem to get through a horrible patch and have a few ok weeks and then it’s back to another uphill struggle. You get so used to your new life that it becomes your normal but only when you go out in public or with your friends with their children you see how abnormal your life now is.

Getting dd’s diagnosis has helped me lots, people seem to be more accepting of dd’s behaviour now I have a name for it, people have been arseholes!!! School are finally helping me out now too! I won’t say it gets easier, I think it’s that you know how to handle things more as they grow so you can deal with it better. It seems I go a few months, have a huge crying episode and then I pull myself back up again and carry on.

My dd is an amazing little girl, I adore her and I have thought to myself ‘if I could take away her autism, would I?’ And every time I think that, I always answer no because then she just wouldn’t be our girl.

Ignore the comments from people who don’t get it, ignore the people who stare and tut or tell you your child ‘needs a good slap!’ Push for your child with health professionals, speech therapists, whoever you end up seeing over the years to come, you are their biggest advocate and they deserve all the help in the world but need us to get it for them.
Also look after yourself, far easier said than done, I know, it’s very rare we can get a sitter but when we do it’s lovely. Everyone needs a break.
Best of luck op flowers

TruJay Tue 05-Mar-19 16:31:13

@PooleySpooley

It’s a wonderful poem, a friend of mine shared it online, she too has a dd with SEN. It was lovely to read, makes me cry but very lovely

Onetwothreee Tue 05-Mar-19 16:32:31

I think on the days/weeks that it gets really rough I lose all hope that things will get better as he gets older. This is one of those weeks. Hopefully I'll feel more positive next week.
You're all right about it being like a period of mourning. Some days I feel like I have accepted it as the cards I've been dealt and feel like I can do it but other days I just feel so cheated of the life I'd always envisioned.

I think my DP is going to leave soon. He's been emotionally and physically checked out for a while. Spends as much time at work as possible as doesn't want to deal with DSs needs. Deep down I think it might be easier for me when he does leave as at least it's one less person to battle with and I can just get on with caring for DS.

I know it sounds pathetic whinging about coffee shops, but that was just an example. I can't really go to any busy people filled places. We're okay outdoors with lots of space were DS can run and get on with whatever he wants to do. But it just gets so lonely.

The lack of communication makes it miserable too.

TheCountessofFitzdotterel Tue 05-Mar-19 16:33:40

You need SEN mum friends, whether online or RL. It's vital to your sanity.

WeCameToDance Tue 05-Mar-19 16:34:19

6 months ago I felt exactly the same as you. I'd had enough of the throwing objects at the wall, the no speech, the not being able to go anywhere where patience was required because ds couldn't handle it, of cooking the same meal every night because he refused to eat anything else etc. He is over 3 now and has mellowed out a lot over the last few months.
What helped a huge amount was being referred to a centre for children with disabilities. I would check if there is anything near you like this or any playgroups for children with SEN.
Also being that little bit older helps, disabilities and the usual terrible twos is a recipe for disaster. You will find ways of dealing with things and places you can go which feel safer than others.
Basically, it does get easier even if by incremental amounts. A few months ago ds's disabilities ruled everything that we did, now they are more like a footnote. They are still there. I'm still cooking the same meal everynight but we have found ways of managing it. You will too.

Sirzy Tue 05-Mar-19 16:35:52

The key thing is to stop comparing your life with others and learn to accept what you have.

It took me 8 years and a course of counselling to accept that really I was in a state of grieving for the life that I expected to have. It isn’t easy and I still have days where I could scream but changing my mindset has helped massively

(And I am in the hate that poem camp!)

Takeapolaroid Tue 05-Mar-19 16:40:42

I do sympathise. I find it very hard with two dc with sn and sad to say, it hasn’t got better/easier but way worse than I could have ever imagined. (That doesn’t mean it will be the same for you of course.)

It was slightly easier when I had a partner to share the load.

SinkGirl Tue 05-Mar-19 16:42:54

I hate the Holland thing too, sorry.

Because let’s face it, if you did end up accidentally going to Holland, you’d just go home where everything is normal and if you regretted not going to Italy, you’d just bloody well go to Italy.

Most of last year from about this time to December I was at some level of anxiety or in tears. One of my boys had a starting regression overnight a year ago and still doesn’t have those skills back. He’s a completely different child and it felt like someone had taken my son away. I saw no progress for months and then I slowly realised with horror that my ofher twin had regressed too but it was gradual and I didn’t realise.

For months I saw no progress at all, literally none. But portage recently updated their skills sheets and they have made so much progress since September. I am still hopeful they will learn to talk. They are much more interactive with me than they were, more eye contact, more wanting affection. Things will get better. Try and get DLA so you get funded nursery hours from 2 and then you can have at least some time to yourself - it makes so much difference.

ArmchairTraveller Tue 05-Mar-19 16:43:18

I thought MN preferred the ‘Welcome to Beirut’ version.

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