Places we like to go

Over the last few weeks we have been out and about.

As I've mentioned before getting "out" is difficult enough with a child with complex needs, but the "about" bit once you're out is also a challenge.

We need somewhere to change Nate, feed Nate, park up with ease, doors and paths we can get through and along,  a lift, no stairs or few stairs ( if there's no lift), and of course stuff to actually do. 

I could quite easily have a moan. Beaches are a nightmare, shops quickly turn into an assault course of rails and displays, old houses and castles are best avoided, and soft plays can be a battlefield. So here's a few places we go that are easy and stress free. 

Seven stories, Lime street, Newcastle.

I love this place. Love love love it. I love reading you see, have done from being a small child. 

They have a basement full of cut and stick activities linked to the current exhibitions, galleries with things to play with and interact with, a bookshop, cafe, and an attic full of dressing up clothing and a storyteller. 

My eldest (6) loves visiting, however it gets quite busy and you can spend a fair bit of time waiting for the lift.  Recently we had the special bonus of going with St Oswalds hospice. We had a sensory trip around the exhibits which was amazing and a brilliant sensory story. There is parking nearby, and the building has good changing facilities. Staff are extremely helpful. Free with max cards.

Alan shearer activity centre, west Denton, Newcastle. 

Last year we had Nate's birthday party here ( expensive!) but you can just ring up to book a free session ( provided you become a member). It always feels chilled out and relaxing inside with well equipped sensory caves, music room ( umm that bit isn't chilled), white and blue sensory rooms, art room, hydro pool, cafe, grounds to wander around, and outdoor play area, and disabled toilets with adult sized changing tables. It's a lovely place to spend a few hours. 

Baltic centre for contemporary art, shore street, Gateshead quays. 

Free entry.

 I must confess I don't "get" this type of art however i applaud any organization that actively tries to get children involved, welcomes children with additional needs into their sessions, and also provides quieter sessions purely for those children with additional needs and their siblings. The centre runs week long workshops for children during school holidays and you book your children into a 2 hr session. The centre has many different events and activities going on in addition to their exhibits. 

 https://www.balticmill.com/whats-on/family-fun

Blue badge parking is free as long as you get the baltic to validate your ticket. 

We went to the additional needs session and quite frankly had a wonderful time. One of the current installations focuses on elements and weather ( the reactions of the children to the boxes of weather were utterly brilliant) so the workshop involved rainbows- lots of painting, pastels and food art. 

The building is airy and accessible ( though I confess we didn't see the toilets/ changing), it has huge glass lifts with fabulous views of the Tyne, exhibits, an amazing shop (where I could easily spend an whole hour oooing and arrring at things), a viewing level, a chill out space that seems specifically designed for children and a cafe. The staff were very helpful- some things they want you to touch/ interact with, others not so much!

 I was really impressed, and art isn't my thing. 

A brighter future?

It has been a very odd few weeks. Odd in a good way. 

We had a meeting with the LEA which did not seem promising with regards to Nate's schooling. 

The medical advice to statement was very umm "gentle" - no mention of nasty pickles he can get himself into. No mention of being life threatened and probably life limited. The advice was written by the local paed with no input from the main hospital ( another area) who deal with him and know him best. So all in all not very helpful when you are trying to convince the LEA to pay for and send your child to a school specializing in PMLD and complex health needs ( out of area) which has a nurse and chest Physio. I was quite cross. 

The result of being cross and asking people locally "when did my child get fixed? and why did no one mention it?" was a very quick appt with his paed. In said appt the paed stated she felt he had a "brighter future" after talking to his neuro. Brilliant. Utterly brilliant in fact, but also slightly suspicious. It's hard to describe being told something so positive, but wondering at the motives behind dropping that comment into a conversation that involved the drs incomprehension atwhy I felt this particular school was the right one for Nate. I still can't understand why they thought he would be safe in a school without a nurse.

 In addition apparently the seizurey episodes he has had recently probably aren't seizures as those type are incredibly rare  ( um this is Nate we are talking about). As he's stayed out of hospital this winter ( 1 winter)  "he's probably not that life threatened anymore" (utterly brilliant to hear but again slightly suspicious). Nate's lack of diagnosis meant she couldnt comment on his life expectany (fair enough) and felt he was a lot safer than he used to be. Well yes that is true but only because of the immense effort made my myself and his dad to keep him well, monitor him, and take action quickly. At the very least I expected his health advice to reflect the amount of care he would require to stop him turning blue not a statement of " people involved with Nate will need CPR training"  Oh and she felt there was no real point testing for a previously mentioned syndrome (it was felt he was unlikely to have this one at the time having no seizures or stomach problems)  even though he has stomach problems and possible seizures now....because a diagnosis wouldn't help......

Hmmm all stunk a bit of "playing things down" to send him to the local school and saving money ( in my opinion)

BUT the next day we had confirmation they WOULD send him out of area. Fabulous. Good sense prevails! Or certainly a more accurate description of Nate's care needs and how quickly his health can deteriorate must have appeared! I am still afraid to accept the positive statements made in the appointment because of the context of the conversation we were having. It all felt like justification for not putting money towards the education Nate needs rather that an updated view on Nate ( I had just seen her 2 months earlier). 

BUT sod the suspicions ill take " a brighter future" and live off that for AGES. 

having a brother like Nate by Thea aged 6

Thea, what's it like having a brother like Nate? 

*looks at me and rolls eyes*

What do you mean? 

Well if you had to describe life with Nate, like if things can be tough or hard sometimes?

No mam, stop being silly things aren't hard for me just for you and dad. Well yes actually you and dad only play with me when the carer comes or Nates at st Oswalds. 

Right. Um. Apart from that?

His sats thermometer (monitor) wakes me up! thats annoying. But i like the sound of his ventilator it helps me get to sleep. And he's heavy. (?)

How do you describe him to your friends? Do you say he's got a wheelchair? 

A wheelchair? Don't be ridiculous mam it's a special needs push chair actually. I tell them he has problems walking and talking and eating but that he's lots of fun. They ask about his ng tube a lot. 

What's the best thing about your brother?

Playing and being silly with him. he is cute and cuddly and gives good snuggles. And I can talk to him in his language of gerrr and he understands me and gerrrs back. 

 Ok.... You know you can talk to us about anything don't you? But do you ever worry about anything? 

I worry about him getting poorly and when he has operations. I don't like it when he's in hospital. 

He was in hospital loads that first year wasn't he?

I can't remember that mam I'm talking about now * major eye roll at me*

Can you think of anything to say to someone about having a brother or sister like Nate? 

Don't be sad or worry it will be all right. Nate is very cute and I love him. 

*attacks Nate with a rabbit and then lies down and cuddles him. Err not our actual rabbit a toy one*