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Here are some suggested organisations that offer expert advice on special needs.

so, had the 1st SALT apt.

11 replies

CrackedNipplesSuchFun · 13/05/2014 10:20

Hi, I dont know what I expect from posting here but I suppose support and understanding from people who have been where I find myself right now.

Apologies if my post is rambling and thank you in advance for sticking it out Smile.

My DS is nearly 3 (2 weeks time). I've always had a gut feeling about him from a few months old that he was a little different. Very quiet, non demanding, slept like a dream etc. Then as the milestones approached he was always very late hitting them.

I seeked help but was always told children develope differently and as long as he is progressing then all is ok. I also suffered dreadful PND as well as interference from a very toxic mum and sister, which contact ended horribly 6 months after ds was born.

As a consequence of this many professionals I.e dr's, HV's have stated ds is fine and maybe im over thinking things and have guilt issues.

We dont have much in the way of family, mainly on my husbands side. All of which have said to me ds is fine and just let him be. Instinctively thoughout this time I have known ds hasnt developed like he should.

His motor skills are where they should be but his language, social and emotional skills lack. Imo. So, after much battling the tide I figured out I could self refer to SALT. Which I did 3 months ago.

Yesterday we had our first apt at home. She was wonderful with both me and ds. She asked me my concerns, I said either being on the spectrum or language issues.

He has the most impressive memory and as such talks in parrot fashion, I hear my self in him all the time. So to outsiders he sounds like he is communicating but really he has memorised a statement and the context and repeats appropriately. No one would believe this but the SALT picked it up immediately.

He made eye contact but thats where it ended.

He didnt engage with her at all ie showing toys or just interest in her.

There was far more to it than that but essentially she has referred us to a peadiatrician for further assessment and she will also continue seeing us and perform various assessments as she believes he has a language disorder. But as he has such a vast amount of language and speaks rather clearly, it will be a long road of elimination to identify what help he requires.

There was alot more to it than that, she was here over 2 hours and picked up on many things, that I knew deep down were issues but every bugger else fobbed me off.

Like he never converses. He makes statements, which can sound like a question but when put against all his other speech he has the same learnt inflection. Shows no empathy, sensory issues.

Whilst im over the moon with relief that I have been taken seriously and someone has recognised the concerns for themselves and are moving us for forward, im also very sad today. As I really wanted to be proved wrong.

Im currently 15 weeks pregnant and just feeling very sad (and maybe a little bit 'why me', I feel so selfish for feeling like this.)

Whilst I know a dx hasnt been given and its very early days and we havent a clue whats the matter or how we can manage it, I just feel so overwhelmed.

I look at DS and just want to make everything better but know I cant wave a magic wand.

My DS is supportive and has told me he's proud ive fought so hard and he's sorry he never backed 100%, he's now being all super positive and we'll do it together but he works all the fucking time, so the bulk of this will fall on my shoulders as well as the new baby.

I have no family close by and no real friends to speak too. So feeling so sad and just cant stop crying at the moment.

Thanks for listening. Any words of encouragement would be welcomed.

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lougle · 13/05/2014 10:25

I'm sorry it's taken so long to be heard. I had similar experiences with my DD1. Take it slowly and absorb what the salt has said. Early intervention is the best chance for children, so don't despair.

CrackedNipplesSuchFun · 13/05/2014 11:40

Thank you lougle. I'm hoping that how I'm feeling right now will go and my fighting spirit will be back!

I feel so thankful that our SALT seems really interested and willing to help.

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Bilberry · 13/05/2014 12:51

Cracked I am so pleased someone has recognised the problems you can see in your ds. So many people think it is kind to offer reassurance but it is not. I hope they can now put in place some support; you may still need to fight but at least it is harder to fob you off now.

However, I am also concerned about you. You say you had severe pnd and are pregnant again and feeling very sad. Please make an appointment to speak to your midwife. You need support as well and you have to save some of your energy to look after yourself. You are at a higher risk of ante and/or post natal depression so make sure you line up your own support - this is not being selfish, it is just as important as looking out for your ds.

CrackedNipplesSuchFun · 13/05/2014 13:43

You are right Bilberry, I will be sure to talk to my MW. I will be seeing her next week and will do so then. Albeit I promise if I feel I need to seek help sooner I will do.

I just feel so depleted right now. Relieved but depleted. I just need for reality to sink in and I am sure I will be back to where I was but it all just seems so overwhelming at the moment. Having a proper pity party! Silly really.

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Handywoman · 13/05/2014 15:35

Not silly, not a petty party. I remember it well, when everyone including the OFSTED outstanding nursery school fobbed me off and I called in the Indie SALT and discovered that I had been right all along, dd2 had serious problems with language. It suddenly feels like someone has confirmed that your life has been thrown a curve ball and nobody really knows what it means. Keep talking and talking and talking to your dh, to your midwife, and to the lovely SALT who is finally fighting your corner and being an advocate for your and your lovely ds Smile

You certainly have posted in the right place. Stick around Thanks

CrackedNipplesSuchFun · 13/05/2014 17:14

Thanks Handywoman, I hope your DD is doing well. Has SALT been really helpful for her, and you?

I'm so scared I've failed DS and that I may continue to do so. You are completely right about being thrown a curve ball, despite knowing deep down there has been a issue that needs addressing. Such a mixed bag of emotions.

I know it's all still early days and I must remain positive, and not try to think of the worst... Which sadly I am very good at doing in most aspects of life. This afternoon and am feeling really excited about the next SALT appointment as she will hopefully have some kind of action plan that we can start.

All I want is to move forward, not backwards or stagnate, just forwards. I long for DS to be able to communicate properly with me. I so hope it happens. I will love him no matter what and I will always be here for him.

This is definitely a great place to post and am very glad I took the plunge and did so Smile. The replies have really given me a much needed lift, so thank you.

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2boysnamedR · 13/05/2014 18:28

You sound a lot like me. I'm 26 weeks pg but our diagnosis was sept. however my toddler has just been confirmed with a DNA duplication too. Too sn kids. Don't feel bad for the self pity, it's part of the acceptance process. Yes it sucks, no it's not fair. It's really sucks

PolterGoose · 13/05/2014 18:53

This reply has been deleted

Message withdrawn at poster's request.

CrackedNipplesSuchFun · 13/05/2014 19:39

2boysnamedR I cant even begin to understand what impact DNA duplication would have. Im am very ill informed on many things that were not included in baby books. I hope you and your family are getting all the support you need. Congratulations on the prenancy btw. Thanks

PolterGoose its terrible the battle you have to face with professionals (and non professionals for that matter) to be taken seriously. I have seen so many Dr's its untrue and not one of them gave a flying hoot, well thats how it felt. I always came away thinking that they just believed I was some precious mother who was a little ott. I'd turn up with diaries and even video footage.

Despite the self referral taking an age to come up with an apt im just so glad I stuck it out. I emailed the head of our trusts SALT almost weekly.

When I booked in this pregnancy I made it very clear about my PND, which is now emblazoned all over my notes! And im consultant led and have had a conversation with them about it to.

Again a masive thank you to all who has posted. I feel a little less lonely and a little more rational. Thanks

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Handywoman · 13/05/2014 19:48

btw it's natural to feel like you've failed him. The exact opposite is true. You've stuck with your convictions and shown considerable determination and tenacity. What a great advocate you are for your ds. Oh, and SALT was the best money I ever spent in dd2 (who has since been diagnosed with ASD).

CrackedNipplesSuchFun · 13/05/2014 19:57

Blush thank you Handywoman. I really pleased to hear SALT has been of great help to your DD.

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