To parents of SEN children

[DontLoseYourFightKid]

Does it ever get easier to accept?

DS is almost 3 and although we haven’t yet had the official diagnosis of ASD through, we’re very close. The assessment process has been overwhelmingly heartbreaking. Every assessment and observation has really broken me, hearing it from other people, every professional we have encountered along the way doesn’t seem to have any doubt that he is severely autistic.

So now comes ‘accepting it’. I can’t even put into words how I feel. I’m sad, so overwhelmingly sad. I cry every day. I can’t speak to anyone. I’m actively avoiding seeing friends and family because it’s just too hard to talk about how I feel, and I find it too hard to be around their neurotypical children. I feel like I’m grieving a child and life that we thought we were having, and I have to now accept a very different life, which all I can see now is heartache, sadness and challenges. I don’t feel like anyone around me understands. But I can’t expect them to understand when I don’t myself!

I have so many questions which can’t be answered. Will this become easier to accept? Do we have a future worth living for? Will I have a life or am I now a carer? Will my son even be able to go to school? He’s facing years of challenges, not fitting in, probably bullying, he might never talk, never be able to look after himself. I need to be strong for my son but I don’t have any strength left. People around me say ‘I don’t know how you do it, I couldn’t’. But neither can I!

Does this mean we can’t have a second child that we’d always dreamed of? Is that unfair on DS as well as a future child? Would this child also have special needs? Do we just have to accept that we aren’t able to have the family we always wanted? We’ll never get to experience being a parent to a neurotypical child.

I know we’re at the very beginning of this journey, but I just need to hear from people that have been through this, to give me some hope. I know there’s no magic answer, but what keeps you going? How do you grow that thick skin that stops you caring when people stare or say hurtful things? I’m so lost, empty and sad. Has anyone felt like this and found a way to go on? X

Hi, I wanted to reply as your post really resonated with me. The run up to my son's diagnosis was an awful time, and afterwards I felt like I'd lost my outer skin - I was so sensitive to everything and couldn't stop crying.

It is a sort of grief, you might have heard of the "acceptance curve" - you start off in denial, I can't remember all the stages but it's important you allow yourself to feel these emotions as that will help you move towards acceptance.

It might be helpful to speak to the autistic society helpline or to a counsellor.

I can't answer all your questions and of course every child with autism is different. But as you learn more about autism you may feel differently. There's a man who was non-verbal as a child who now delivers training in understanding autism, I forget his name, but I think I found his videos on the national autistic society website. I've found it really helpful to hear the experiences of adults with autism who can explain what it's like in a way young children cannot.

My sons 17 now but I remember the early days well x
It's hard at first because everything is so negative and all the things the kids struggle with are highlighted but never the positives x
I was in aright black hole during all the assessments and remember thinking is life worth living BUT it does get better x
Once school support and placement decisions are sorted you learn to breathe again x and even start to get excited at watching your child's progress,progress that is small but means so much .
I'm going through it all again right now with my other child and I can feel myself having the same dread and heartache but I know it will pass and I will feel
Myself again soon .
Remember to take time for yourself even if it's just a nice soak in a bubble bath or a walk in the autumn weather just to take you away from all the negativity and think of good times x
It will pass and you will start smiling again xx

OP, I was you three years ago. Just been referred for assessment and it was a very difficult time in our lives. I know how it feels to have the constant negative feedback and reports from professionals and I worried for my son, my marriage and life as a family.

I remember not wanting to talk about it, crying a lot and feelings from my recovered from PND returned. Seeing other people's children the same age broke my heart.

I absolutely loathe the 'I don't know how you do it' crap. I adore my son but obviously didn't choose him to have special needs. I hope I would do what any reasonable and competent parent would do for their child but it's hard and some days I felt that I absolutely couldn't do it. I just used to smile and nod, and try and think it came from someone thinking they were saying something supportive/they think it's a compliment even if they didn't realise how patronising it was.

We also had the second child debate and for reasons including the possibility of having another child with special needs and worrying how we'd physically and emotionally cope we decided against it. That decision is one I've wondered since whether it was the right one but it was at the time. There are now a lot of advantages, for us at least, of just having one child.

Life has fast forwarded three years and is very different and for the better. DS probably isn't autistic but he does go to a mainstream primary with a speech and language resource and he's thriving. We have recently made it to the top of the list for autism assessment after nearly 3 years. We saw Speech and language two weeks ago and all those old feelings, anxieties and worries returned, along with the dreaded negative feedback and reports.

My advice would be to look after yourself and don't put pressure on yourself to 'do' things. Only see the people you want to and probably it will be time that helps the most. We went to a playgroup specifically for autistic children or those who had been referred for assessment and that felt like a safe space. There is a process you go through and it is like grieving.

I read the only easy to read style book that helped me on the path to acceptance - a parents guide to reclaiming your life by Deanne picon.

Honestly, nothing made me feel better apart from reading this and it’s a book you could read in a few hours. I revert back to it 20 years on in my low moments. All my fears were in there along with coping mechanisms.
It does get easier. And different. And you do change as a result of it.
I know you wish it wasn’t happening to you. It’s a different path but not necessarily a worse one. Just different.

I remember someone telling me that when you have children, (after I felt so low after my sons severe diagnosis) , there’s no gaurantee that a neurotypical child would have a fairytale life and you’d have a fairytale Motherhood experience.
This is your different.

And whilst I will mourn the fact that his life won’t follow the set pathway of marriage, kids etc, he will also be cosseted away from the horrible parts of those experiences too- because they’re not all fairytales either.
I think what I’m trying to say and what the therapist was trying to articulate to me when I had counselling, was that every life will be different and you’ll follow challenges and struggles and highs, lows that you never thought possible.
I would’ve looked on you rather sadly had you told me back then that my son being able to wipe his own bottom made me feel like I won the lottery. His small accomplishments were the equivalent to me as climbing Mount Everest. So I guess I did learn to appreciate the very smallest of things but yes, what a way to learn them.

Read the book.

Go easy on yourself.

You and your husband will need to be a team and be each other’s rock without blame or anger or frustration. So really make sure you both know this and you’ll grieve for the future you think you've lost but you’ll find a different future which is just that-different.

Now use your skills to get your son into the best school with the maximum amount Of support from social workers, get a solid EHCP detailing all his needs (yep, that’s I’ll break you again but you can do it) and be prepared to be your child’s biggest fighter.
If the futures different, make damn sure it’s the best one you can give him and get for him.
Come back here and keep talking.

Not 20 years I meant 10!

Thank you all so much for your replies, they mean SO so much xx

It’s so nice to hear such honest accounts from people that understand exactly how I’m feeling. I think even just writing it all down lifted a big weight. I really struggle articulating and explaining what I’m feeling, and you’ve all put into words so many of my emotions.

‘progress that is small but means so much’
‘His small accomplishments were the equivalent to me as climbing Mount Everest’
I love this so much, it’s so true. I’m so incredibly proud of our son for every single tiny thing he does. And in a strange way I’m grateful for all of this because it has made me appreciate everything in our life so much more!

My biggest worries are always about the future and the unknowns. If I focus on ‘right now’ and just ‘us’ I actually feel quite happy and content. Because I know we’re doing our absolute best to give him everything he needs right now. But I’m so scared about school, because I feel like there’s only so much we can do about getting him the help he needs. I wish we had money so we could pay for a specialist school where he would get everything he needs, but sadly we don’t and I’m so worried we’re going to fail him because of this. I hear so much negativity about poor SEN departments in schools. How will I know where can actually provide the care he needs? We’ve already had a nightmare with pre-schools who claim their SENCO’s are great but we’ve tried them and it’s been a disaster. We’ve fortunately now got DS settled into a good pre-school and they have been amazing! But I’m dreading going through this all again but on a larger scale with school.

I’m feeling so weak at the moment when I know the battle has barely begun 😔

I have ups and downs re DS1 who has ASD and dyslexia. Poor working memory. High IQ overall so has good potential. His school performance is often below his ability due to anxiety and the dyslexia. I find this heartbreaking. He is often anxious and stressed.
We are looking at schools for him for 13+ (yr9) at the moment, having taken him out of state school age 5 as he wasn’t thriving. Small private school has been great and he has been incredibly lucky to have had that opportunity , but it is hard to choose the next step.
What I find tough is how much easier most kids seem to find everything. And their parents seem to have so much more energy than me!
My dh and I both have demanding jobs, and another non-SEN child, but I admit I often feel quite overwhelmed and don’t know what is the best choice or direction for ds.
Future unknowns anxiety really resonates with me.

Money won’t buy the best school place for your son - I promise you that. The sen specialist schools I looked at - over 20 were in actual fact worse then the mainstream sen provisions, and also not monitored as well.
Remove that thought from your thinking. You won’t fail him here, but it will require a heck of a lot of visits and your own gut feel
What you’re doing now- showing him experiences , a great pre school is the right way to go. Salt, OT also good resources to focus on getting the right people for those things.
Have a look now at sen schools and mainstream schools with units attached - basically everything in your LA. You can get a
List from your social worker. And call up the social worker in your area and get one allocated to your family from the department for children in need- you’ll need one of those reports compiling also, they take months.
Only once you’ve gone through all the schools open to you in your LA then you’ll feel empowered to know which one is the best for your son. But make those visits now. If he starts school in September you’ll need to see them all beforehand. Even if it’s 2 years form now, it will take weeks to see them all, especially with covid rules.

This is all really great advice, thank you so much xx

Aww this makes me so sad! My boys (Eldest just turned 11 is DCD, ASD, ADHD) youngest nearly 9, was permanently excluded age 6. Genuinely horrendous time but he is now back in mainstream and has 1:1 TA support. He has ADHD and ASD. We had to fight like mad for it. We are permanently exhausted, their needs often clash but I wouldn’t change either of them! They are best buddies, so clever, they’ve taught me so much! Greta T, Gary Newman, Einstein, Elon Musk and many others are / were on the spectrum / ADHD. It’s not a death sentence! No, you haven’t been dealt the hand you expected and yes that’s shit but be thankful it’s been identified now rather than so many who wait years or like my youngest, are just seen as a naughty child despite having a brother who they knew was on the spectrum. (As it’s very obvious, typical Aspergers). As for another child that’s up to you. Mine are close in age just over 2 years between so I didn’t know but had I? Absolutely I would have. SEN children need to be with peers and what better peer than a sibling! Just my HO of course.
Join some local groups; see if you qualify for DLA; we do and it’s allowed me to go P/T at work. Something I should have done years ago as ‘the fight’ hit me like a tonne of bricks! Best wishes and above all, champion your child; if we don’t, no one else will; even on the days you cry and scream! Xxx

Thank you @LancsMum88 I really appreciate your honest opinions speaking from experience. It’s really helpful for me to hear other people’s stories. Thank you all of you 🙏🏼

I think I need to accept life will be ‘different’, but at the same time put things into perspective. I’m so grateful to have DS and he has the most awesome little personality, we’ll always love him for exactly how he is. We just need to find ‘our way’ in life.

I’ve done a lot of crying but I’m now feeling like I’m heading into ‘practical mode’ and I just want to do everything I can to give DS the best chance. I really appreciate all of the advice here about schools and EHCPs etc I have so much to learn! Xx

My pleasure. If nothing else you will be there to help other parents, just as I have (thank you) been helpful to you, I was once you! Definitely look at local groups; you’ll make new friends and they’ll get all your frustrations etc without having to explain yourself. You’ll make new friends who get you and your child and that really is priceless Xxx

Don't feel guilty about grieving. I have so much sorrow and regret about what never can be. But your child will make your heart shine in ways you never thought about.

Look after yourself. I'm on anti-depressants and expect to be for a long time. But it means I'm in a position to be the best I can be for my DS and that's a big help to him and me.

Hi OP, I have a DD with ASD and ADHD and I felt quite relieved when we got the diagnosis, as we had felt like such crap parents! I won't lie - I have felt jealous at times of friends and family with "easier" children. But DD is a terrific personality with friends, hobbies, a great sense of style and she is managing in school with support (year 4). The best thing I did was find a Facebook group for parents of similar DC locally. They really get it. I have had to let go of the idea that she will be like me and my DH academically. She is a fish out of water with academics (she's able but not interested in learning/able to learn to anyone else's schedule). Good luck and I hope you feel better soon.