Sad about SEN

[specialed]

I have a 3yo who was born premature and is behind in pretty much every area.
He's currently being assessed for whether he'll need an EHCP and what nursery can do to support him.

I have had to push this as services around here aren't very proactive, but I still feel very sad that my miracle baby is going to struggle in real terms at school & need special help.

How can I shake this off? He's going to really struggle, all his friends are overtaking him and he's getting left behind all the time.

Op l feel for you, my dd doesn't have sen, but was diagnosed as having a fairly severe joint problem at 3 yrs old. It is not life threatening and will very slowly ease once she is fully grown.
She couldn't do lots of activities, had to sleep every pm, couldn't go to most parties , do many sports etc.

I was often up all night comforting her as she was in so much pain, it got a bit better, until recently when she is going through puberty which has set the pain off again, she has missed 9 week of school this term and l have not slept much helping her.

The last 4 weekends have been completely taken up helping her catch up with schoolwork, and tucking her up to rest in between.

The worst was at primary age most parents just thought me overprotective as her issue is not visible, and due to my careful structuring of her life she mostly gets to school.It has been hard and lonely at times......BUT l spent some time with my DS at Great Ormond Sreet for a small op he had at age 1...and it completely cured me of my sadness for my DD...l saw so many children who will not live to see 13 (the age DD is now) with life limiting illnesses, and the struggle on their parents faces l will never forget.

So if at 3 am, l am massaging my DDs painful knees, worrying about how much schoolwork she will inevitably be missing tomorrow, and how tired l am going to be again, l remember those kids and parents and kiss my lovely DD, so grateful l have her, l hug her and tell her what a joy she is to me.

Lastly l never let her become self negative about the things she cannot do, l won't let her be a victim of her condition, or wallow.

I remind her there are other kids far far worse off than her.

Love your Ds as l am sure you do, let him (and you) walk to the beat of your own drum...do it your way and be proud of him.

It will be hard, you mourn the child you thought you were getting.
Only way to deal with it that I’ve found works is to dump those fantasies and love the child you’ve actually got, with their strengths and their needs. Focus on their strengths, accept they are unique and don’t compare milestones with other children. It won’t help and will break your heart. Let all the petty, spiteful and well-meaning comments roll over you without touching you.
Make friends either IRL or online with others in the same situation.

Love the child you have - you will be rewarded with an incredible bond.

Thank you - I do love him so much, which is why I've been pushing for him to get all the support he needs, but sometimes it's heartbreaking to see him struggling to keep up with his friends.

It's okay to feel sad for a little bit, especially at the beginning when it's all new and you're adjusting to your new normal, but don't let your sadness for what could have been steal away your joy in the little boy you do have.

Seek out other parents in the same situation who "get it", both the highs and the lows, it helps so much being in contact with people who understand.

It's gets easier, you reach a point where you accept that it is what it is and you develop a thicker skin. I do still get days where it feels like all DS peers are progressing and he's still at the stage they were several years ago, it stings but dwelling on it won't magically cure him or bring him up their level so instead I focus on what he is good at, what he has achieved, and that he is moving forwards but at his own pace.

Fighting for services and pushing to make sure his needs are met doesn't end, at least not in my experience, but coming to the realisation that while it's good to maintain a professional relationship and work together, doctors/teachers/assessors are not my friends and I don't owe them any favours when it comes to getting what is best for DS. There is a saying that the squeaky wheel gets the grease and it's very apt when it comes to making sure everything promised is provided.

If he is going to be assessed for an EHCP, the likelihood is that he will be places in a school that will meet his needs, sooner rather than later. That means that there will be the more specialised type of support that he needs and that will enable him to make progress.

It’s right to say that you have to get rid of the idea of the child you thought you were getting. You love him and want the best for him. He is still your precious child, but he may have a different life from the one you planned for him. Just as valuable, just as rewarding, just different.

He will have the most precious thing though- your love and support.

Doom thanks for writing that. My Ds is 14 and has undiagnosed sen, he is currently waiting to be assessed. School have been unsupportive and we contacted them with a complaint last week, I also emailed PALS yesterday to complain about the awful waiting times for asd assessment. Not sure if any of that will help but I just feel lost and doing something feels better than not doing anything at all. I actually feel guilty making complaints but my child is really struggling and I'm fed up that no one wants to listen or help.

Specialed, look at early support as a positive and it will hopefully mean that your Ds will reach his potential in school. I so wish we could have had earlier intervention with Ds, I don't think we would be in the situation we are now if he had support earlier on.

An amazing father I once knew said that having his daughter (who had very significant additional needs) was like planning a holiday to Venice. You knew what you wanted to see in Venice, you’d read the books, planned the sight-seeing and researched your hotel. However, when you got off the plane, you found you were in Madrid. Nothing wrong with Madrid, it’s a fascinating place, but not what you’d planned and prepared for. The feeling that this wasn’t the plan took a while to go.

My son has a specific learning difficulty. I didn’t expect to be supporting him to write birthday cards at 14 (grandad, dad and birthday all have potentially tricky letters when they won’t stop wiggling and flipping around). I didn’t plan to be spending a fortune on specialist help that isn’t covered by the NHS. However, I also didn’t plan to find the talents he does have- they were a complete shock! The fact that he has SpLD is just one facet of him. His friends get it, his girlfriend gets it- they have to guess what his texts say sometimes, but are never unkind.

Your son’s friends will be amazing as he grows up, children usually are. I’ve been teaching for 20 years and the capacity of children to understand, adapt and challenge the pre-conceived ideas that adults have about disabilities- both learning and physical- never fails to astound me.

The SN boards here are a constant source of information and support. Years ago, a large number of us were linked by our loathing of the ‘Welcome to Holland’ piece of writing. Someone either wrote or found a fantastic response called ‘Welcome to Beirut ‘
My two are adults now, lovely individuals who live in the real world most of the time but still need to retreat behind the looking glass on occasion and enjoy their own world. Yes to having to fightfor them, and support them over the years, but the rewards are so worth it.