Merry Christmas

This photo just melts my heart, I know I say it all the time but I couldn’t be prouder of Teddie if I tried. This was Teddie’s first nativity as last year he couldn’t handle it- so much so he still struggles with the school hall even now. Teddie had a slight blip at the beginning of the play as something wasn’t where it normally was but it was sorted in no time.

Seeing Teddie centre stage singing and dancing was like a dream come true for me. My face was hurting so much from smiling, he only did one song but he bloody smashed it!

School plays are always a bit bitter-sweet, as much as we want Teddie to be involved in them at the same time I’m filled with dread he’ll have a meltdown in front of everyone while it’s being recorded for all to purchase. As, much as I really do not care what people think I don’t want to put Teddie through it.

I honestly was dreading the last few weeks of school for Teddie but he handled it so much better than last year. The end of the term can be a struggle for all children let alone Teddie, it’s been a long-term and everyone is exhausted from the constant change to the daily routine.

The boys have all finished school for Christmas, the first day of the school holiday’s has begun and we are staying in PJ’s all day.
Teddie has been on Christmas countdown for weeks, but the last few days he’s been super excited as the days get fewer. We decided against getting chocolate advent calendars this year for the boys instead we opted for a wooden countdown wheel, I think it’s this that has got Teddie so excited. I cannot wait to see his little face Christmas morning.

On Friday we are seeing Teddie’s paediatrician for the last time, we were due to see her 2 months after receiving his diagnosis but in fact its 2 weeks short of a year due to the ridiculously long waiting list. It annoys me slightly that we will be discharged as if we ever need to see a paediatrician we will need to be referred to again. Although we have waited forever for an appointment I cannot wait for the doctor to see how much Teddie has changed since she last saw him, to think a year ago he was non-verbal now we can’t keep him quiet. It’s amazing what difference a year can make.

Every day Teddie faces a new challenge, we don’t always know how to deal with them all but we always get there in the end!

We love our Bear and wouldn’t have him any other way

Making the change

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If there’s any advice I would give to parents who are just starting their journey with or towards a diagnosis it would be this:
The diagnosis at this stage isn’t for your child it’s for you as parents, your child is who he/she is and a diagnosis isn’t going to change that or help them in any way (other than school) it’s down to you as parents to make that change.
The dynamics of your lifestyle need to change, not solely around your child but adaptions need to be made so everyone can live in peace.

We certainly found it hard adjusting our family dynamics, with two older boys and jobs we hoped Teddie would just slot into our routine but unfortunately, that wasn’t the case.
We cannot and may never be able to rely on Teddie to make sure he has everything he needs for his day as we would be setting him up for failure, although at 5 this would be an ask regardless of an additional need. As Teddie’s parents, it’s down to us to make sure he has everything he needs accessible for his day out readily and waiting for him so when I say Teddie go get bag and shoes he knows where they will be and he’ll feel he’s accomplished what was asked of him as the slightest thought of failure can result in a meltdown.

Fight, fight, fight for your child, I often say to parents you’d never let a person physically hurt your child, so don’t allow them to mentally hurt them. There is no difference between the two when it comes to neglecting your child due to their disability, the pain and hurt are just the same.

Stand proud and be present, show the person you’re meeting with you know what you’re talking about, they may well be qualified in their field but they are by no means as qualified as you are as you live this job day in and day out!

Even on the hardest of days never let your child see how you are feeling as they will only mirror your behaviour and make the situation worse.
We have all been in the situations when at times the right thing to do would be to shout and tell your child off but you are just pouring more fuel onto the already out of control fire. I’ve perfected the inner scream down to a tea now, there are times when I’ve wanted to shout, scream and cry but as always I need to have a “happy face” as it’s my smile that clears the cloud over Teddie when he’s in crisis.

Talk about how you are feeling, everything you are feeling is completely normal and trust me we have all thought it! If you can try to attend parent workshops do, there honestly not there to tell you how to be a parent in-fact you can gain some insights on how other parents manage their routines and feel supported at the same time.

Love and support your child every day, always be their voice and never apologise for who they are.