Here are some suggested organisations that offer expert advice on SN.
Feel desperately sad. Need positive stories plz(9 Posts)
For the past year I have been struggling with suspicions that my 20 month old will have SN. Slowly, over the past 4 months, this has been confirmed. I'm just having a sad day today in which I desperately wish my baby was "ok". I just need to hear some, any, positive stories from parents of sn children who are not only coping but are happy if that makes sense?
I remember that feeling well, the dawning realisation my DS1 may have SN when he was around the same age as your child. It's hard, but try not to let your mind race too far into the future; get the referrals you need and just aim for things that will make the here and now easier for you all. DS1 is now 11,he amazes me (and sometimes frustrates me!) just like my other DC do.
Along with the sn stuff often comes lots lovely things. You will be so proud of your child when they learn something new. My son loves music and reading (slightly obsessively) and is usually smiling and is extremely friendly.
You may have a bumpy ride ahead, but we are a few years down the line and there are lots of highs as well as lows. My son has a great life, he has friends, he learns in school, he has interests and he sot of energy, resilience and determination that I could only dream of. Often he infuriates me and more often he amazes he with the way he tries and tries and with his brilliant tipsy-turkey take on the world. I have been through a long process ( including psychotherapy) in making my peace with his disabilities. I'd never have known I would need to do this but I did and our family life is infinitely better for it. You will encounter some right numpties ( professionals and people you knew already and would never have expected of being numpties). But you will also come across professionals, friends and just random people you meet who will fill you with hope. For us it was the OT assistant who I swear has sort of magical powers, his lovely teachers who show infinate patience and belief in him, my son's swimming teacher who told me ' he makes my weekend, that boy does' and the father of the bride at an ( posh, formal) orthodox Jewish wedding who told me off for apologising for my son ( he was being quite giddy) and assured me that every child who comes into his house is a blessing and that he'd always be welcome here. Life's good here, for all of us
I found I learnt to celebrate the small stuff and manage my expectations.
My ds is 12 now but I remember so clearly the feeling of how different he was.
Baggins. I have been there too and experienced all the emotions, sadness, guilt and anger. There are still times when I beat myself up over it but this has lessened over time.
My dd was born 7 weeks early. Late in meeting her milestones but I just put this down to her being premature. It was at 21 months that we got a diagnosis that yes there was something actually wrong.
My dd is at mainstream school and is happy and settled in well, she is now 5. Yes she has her challenges, but as other posters have said when your child meets a milestone or does something new it will mean so much more to you.
As first time parents, and living away from extended family, we just assumed that DD was a difficult child and the same as lots of DCs. We knew she had reflux, but sleep problems, anger problems, sensory problems, not making friends and not engaging with others - all those small things didn't add up to 1 big thing for us until the crèche suggested (at age 4.5) that she might be on the spectrum and we should consider getting that checked out. As she did read early, was good on numbers/letters/colours etc, loved water and running and climbing, and seemed to hit her milestones generally.
That first conversation - as part of her general 6 monthly review meeting, and done so nicely in fairness to the crèche - was a killer. And then we could see so much once we looked with that mindset of - maybe it wasn't just us having a hard time, maybe she is actually a DC having problems.
But we can celebrate lots of positives - and always have been able to. Yes there are hard things to deal with, but actually knowing about her DX, and learning about different things that we can try for different things, means that we approach it positively - and there is a lovely little girl within DD who comes bouncing out sometimes and just takes your breath away in a good way. Which makes up for a lot of the tears and frustrations that we have felt at times.
DD has a lovely laugh, and a smile that lights up the room when she does use it. She loves to help, and we can now get her to make a meal (she's 11) or big parts of it. When she first started coming home alone (getting home 10 minutes ahead of me after school - rather than staying longer in afterschool club where there was some serious bullying going on) she set the table for dinner the first night unasked, and has continued doing that since September!
She is extremely sporty, she has pulled back from more team sports (which is not totally surprising - social skills things rather than the sports skills), but she loves running long distances (school did 1km run daily in January, and she adored that!) and also sails as often as she can get on the water. She gives great hugs. She has a fantastic grasp of maths, all sorts of maths concepts and regularly twists us up in knots these days. And she loves being a "buddy" in school - where Y5 pupils get matched to a Reception pupil, to support on their introduction to school and have some fun (games, crafts etc) for the 2 years of Y5 and Y6 until the bigger buddies go to secondary - the older pupils organize it, and there tend to be great bonds built, and even DD is really enjoying that.
The hard part, as parents, is trying to remember those good things. On the bad days when you are just muddling through, or on the formal meeting days with school or professionals where you tend to focus on the negatives (as the things to work on) and often gloss (usually unintentionally) over the positives and things that HAVE IMPROVED. Or the days when you are having a bad day yourself (about work, relationship, DCs, money, the weather - anything at all) and really just want to be able to have it about just you for a change - but you have to slap on a positive face and deal with whatever DD is facing as well.
But reminding yourself of those positives can really help you get through those not so great times.
Ah baggins it's hard isn't it? I found the stage you're at the hardest if that helps? I was in shock and full of grief for my son and felt like the looming prospect of a likely asd diagnosis was the most miserable start to his young days.
I really focussed on doing stuff with my son which we both enjoyed (not easy when batteries and a magnetic name badge are the top choices!). I tried so hard to connect with him and enjoy him. As brutal as this sounds, although I always loved him fiercely from the minute he was born, spending time with him was hard work. He screamed alot, was resistant to any kind of change and never looked me in the eye or spoke.
He went to a sn school at 4 years and at 7 is a charm who thrills and annoys his brothers in equal measure! Our lives are completely different to what they would have been but it's OK. We are way happier with our lot than some families we know and enjoy the time we spend together.
You life will change, your ds will change but the love you feel for him never will. You can both be happy, I promise.
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