Hi's & Lo's of Irisha

The small reminders that Irisha is autistic - I'm sitting, listening to near silence when Irisha pipes up and says "god them birds are noisy! All the way outside...No wonder people get angry at them"....me - I have to concentrate to hear them 😳🙁 bless her!

Love this! I've invested in LEGO before!! Love it that bit more now!!

The LEGO Foundation Announces $20 Million to Support Neurodivergent Children The LEGO Foundation has announced that they will be investing $20 million to prompt innovation supporting neurodivergent children.

RSD

This is in Florida and refers to a schools change of procedure to include zips, straight jackets and other restraint for any child if deemed necessary. THAT is going backwards not forwards. Although this is in America - I've tried to sign it because I don't want any child in the world subject to that!

Sign the Petition End Physical Restraints Against the Disabled in PBC Schools

Listen to autistic people and what THEY want, prefer and need!

De-escalation. Sometimes it works, usually once the switch has flipped - there's no coming back. Maybe these will help to stop those switches flipping over 🧡💛💚💙

ADHD

Well, for many years (at least 4 years) Irisha has suffered with her stomach with symptoms coming and going - headache, diarrhea, constipation, stomach pain, joint pain, thrush...just to name a few. I've been back and forth to peads, with her school, family..trying to work out what it is. We thought milk protein allergy but she can have milk and be fine. After 6 months of very careful diet planning, removing and reintroducing foods...and then reintroducing what I have always (since day 1) thought was the issue....I now know for definite and it's now on her medical file. Irisha has a serious yeast intolerance! It's been masked by anxiety, by her ADHD, by other illnesses as they've come and gone but nope....yeast. Yeast is the problem ingredient!

So...I've decided to make Oreo Irisha's support cat. I've been racking my brain trying to think of ways to reduce Irisha's anxieties when in unknown situations or with unknown/new people...then I realised how in tune Oreo is with Irisha - she avoids Irisha during meltdowns and gives the space but when Irisha is anxious or in sensory overload - she sits/lies near her with gentle head nudges and remains there until Irisha is back to her normal. Oreo is also incredibly curious to go out and often runs outside but is scared to venture further.
Oreo was put in the backpack for the first time today and took to it like a duck to water. Even falling asleep at one point in a chaotic friends house. She's in training atm until she's used to it, once she is, she'll only be going out for appts or unknown situations. Irisha has loved it 🥰

This is my life. Chasing community peads..only to find out I need to chase children's outpatients, to then go back to community to explain the update. I'm trying to avoid the normal 4-6 weeks for clinic reports to be done and sent, to get Irisha back on medication as quickly as possible. She's been off them since Nov for further investigations - now to wait another 6 weeks or so for letters and forms. This is the life of a SEN parent....

My week this week;

Monday -
8:30 dropped Irisha at school
9:00 food shop
12:00 - 15:00 was on SpLD course.
15:15 picked Irisha up from school
15:35 home

Tuesday
8:30 got up and dressed
9:15 - 11:10 cardiology appt for Irisha
11:30 dropped Irisha at school
11:45 - 15:00 meeting/work
15:15 picked Irisha up from school
15:35 home

Wednesday
8:30 got up and got dressed
10:05 left for Irisha's dyspraxia therapy
10:30-11:20 therapy
11:50 drop Irisha off at school
13:00 - 14:30 meeting
15:15 picked Irisha up
16:00 - 17:00 meeting (Irisha was with childcare)
17:20 take Irisha to Brownies
17:30-18:45 Irisha at Brownies. I cleaned and cooked tea then left at 18:35 to pick Irisha up
19:00 home

Thursday
8:30 dropped Irisha, Lexi and Lewis (friends kiddos) to school
9:00 - 15:00 meeting/work

Friday (the plan is...)
8:30 drop Irisha to school
9:00 - 11:00 work
11:15 - 13:15 housework
13:15 - 15:00 errands

There's no way of fitting in a job around caring for a disabled child. I do all these things in the time Irisha's at school because when she's at home, I'm doing housework, washing, Irisha's care and more...I have a good balance esp as I only have Irisha, but imagine having more than one disabled kiddo!