Charities I like to support and useful Websites and support groups

There are 3 charities in particular that I like to donate to: 

www.facialpalsy.org.uk

This is a topic that is close to my heart, Facial Palsy UK completes research projects which aim to create a better future for everyone affected by facial paralysis. As I get older I may enquire about surgery, as my skin loses its elasticity. Please see here for more on my personal story: http://wp.me/p7BVlE-1m

http://www.autism.org.uk/

Find out about diagnosing autism (including Asperger syndrome), and the impact on people and their families, and find advice and support on all aspects of life with autism.

I’ve gained such a year deal of information from NAS, via videos and research articles. I recently found lots of information regarding Pathological Demand Avoidance.

www.nspcc.org.uk

This is a subject that this very close to my heart. My closest friends and family know why I am passionate for this cause. It doesn’t matter if your 3 or 33, child abuse and neglect should never happen and there is no excuse for this behaviour. These actions have so many implications, not only the child at the time, but for the rest of their lives they carry it with them and there’s evidence to suggest that certain aspects can in fact, be passed on to future generations.I wish I could give more, but I can help put a little towards helping this extremely important cause.

Helpful websites:

The following are links to websites that I’ve found very useful and helpful in the past few months, all of the following also have a Facebook page/group, and can be found via the search bar.

SPD Parents Support

A great support group for support and advice from other parents. USA site but very helpful.

www.thesensoryspectrum.com

A website dedicated to sensory kids and their parents.

www.sensoryintegration.org.uk

The SI Network (UK & Ireland) is a not-for-profit organisation, promoting education, good practice and research into the theory and practice of Ayres’ Sensory Integration.

https://www.spdstar.org/

Research and education for adults and children with SPD.

www.theisabellatrust.org

Support for parents and carers of children with ASD and/or sensory processing difficulties.

www.lemonlimeadventures.com

Author of Sensory Processing 101. Adventures in homeschooling, natural living and personal experiences.

http://www.arcos.org.uk/smile

SMILE stands for Sensation Movement Interaction in Life Experiences. We help a variety of children with profound and multiple disabilities. Lou attends here for hourly sessions, especially in the school holidays it’s amazing 🙂

For more information please see: http://wp.me/p7BVlE-Y

www.pdasociety.org.uk

Sharing information relating to Pathological Demand Avoidance syndrome.(PDA). Registered charity.

www.awarenessforautism.co.uk

Awareness For Autism is an on-line support network for families and individuals affected by autism.

www.autismwestmidlands.org.uk

The leading charity in the West Midlands for people with autism. Produced a booklet called ‘Sensory Profile.’

www.adhdfoundation.org.uk

Promoting inclusion in mental health, education & employment. Endorses University of Derby’s online course I’m currently completing in Autism, Asperger’s syndrome and ADHD.
Improving life chances through better understanding and management of ADHD, change the negative perception of ADHD into a positive.

www.time-to-change.org.uk

Aims to end stigma and discrimination experienced by people with mental health problems.

http://www.mind.org.uk/

The mental health charity. 1 in 4 people experience a mental health problem every year. Offers support and advice.

http://themighty.com/

Facing disability, illness and mental illness together, some great articles on here.

http://www.redtedart.com/

Art and craft ideas for kids.

Siblings Project

The Siblings Project – every 15th of each month can link up with photos of siblings. Please see more here:http://wp.me/p7BVlE-5v

www.learningspaceuk.co.uk

Specialised Products Aiding Child Education – great sensory toys and equipment, based in Northern Ireland but can order online.

www.cafamily.org.uk

Contact a Family (CAF) – national charity for families with disabled children.

www.familyfund.org.uk

I have written how this wonderful charity help support children with disabilities via grants. Please see: http://wp.me/p7BVlE-1u

SENDIASS

Supports both carers and young people with SEND.

www.specialneedsjungle.com

Parent-led news, information and informed opinion on special needs, disability, children’s mental & physical health conditions.

Hope that this helps 🙂

Thanks for reading 🙂

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PDA part 2!

Wow how much I missed in my last post about our experiences of ODD and PDA!
The following article popped up on my news feed this morning:
www.autism.org.uk – What is PDA?

Cue doing what I do best and scoring Lou against the PDA ticklist from the PDA Society and printing off the relevant information for her Paediatrician, I think I’m in ‘fighting mummy’ mode and “What have I got to lose?!”

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Source: http://www.pdasociety.org.uk
For children a score of 50 and over…

“Identifies individuals with an elevated risk of having a profile consistent with PDA.”

Lou scored 68!

I’ve found out so much more from the article from the National Autistic Society (NAS,)
I think it’s probably easier to bullet point what I’ve read in terms of our current situation with Lou:

● PDA is anxiety based on a need to be in control – feel secure when in control.
● Boys and girls can be equally effected, unlike Autism and Asperger’s Syndrome.
● PDA presents as controlling and dominating. Lou controls every situation, e.g up and down the stairs “I have to be first,” first to dress, first to finishing eating, will get distressed if I finish my lunch before her saying: “I wanted to be the winner.”
● In the PDA Society Booklet ‘Awareness Matters,’ it talks about children who “put on a performance, hiding all of their difficulties, for limited periods of time,” it does on to say that the people who spend most time with these children,  ie parents, notice their problems more.
● I’ve been noticing so much lately about the way in which Lou talks to us as adults, I find it quite rude and bossy. Children with PDA are often seen as ‘mini adults,’ Lou has said to me frequent times, (especially when she’s angry,) that “Mummy you are the child and I’m the adult.” Only yesterday she demanded that I “get up and get some food, now!” When I explained that this isn’t how we should ask for something she counted from 1 to 10 several times then told me to “go onto time out – NOW!” Which is the counting for processing time that we offer as parents when asking her to do something.
● Lou will tell other children how to behave but often doesn’t apply the rules to herself. E.g “you need to hold your mummies hand when crossing the road,” but she doesn’t do it herself.
● Lou will often talk in an adult way, using adult manorisms, for example, she will tell other children off, especially Moo saying “look at my face, good listening now, or its ‘Time out!’
● Lou will often blame other children for her actions,  for example she said “Billy did it” after she drew on her trousers with pen. (Name has been changed.)
● Lou will deny actions even if she’s caught red handed, for example, if a book has been ripped she’ll say “Moo did it” even if she’s been asleep upstairs or sat in a high chair nowhere near!
● Lou will show little shame or embarrassment if she throws a tantrum in public, she will not be bothered by people starting or commenting if she’s rolling around having a tantrum on a supermarket floor! It’s taken me a long time to cope with the stares and comments!
● In order to avoid a demand or request, Lou will answer politely: “No thank you,” and often says “I’ve got a sore back,” “my leg hurts.” Or “I’ve got a headache,” to avoid doing something.
● Eye contact – Lou generally uses eye contact especially if things are going her way, although she never uses eye contact when asking her to do something, often making it look like she hasn’t heard us. We have arranged for her to have a hearing test in July to rule out any hearing problems, but deep down I just know that she’s hearing us, but choosing not to listen.
● Links to SPD – another light bulb moment when I read that PDA has links to sensory difficulties in processing information in terms of light, sound,  smell, taste and touch.  This can also have an effect on Proprioception difficulties (bodily awareness) and vestibular awareness (balance.) I have had concerns about Lou’s spatial awareness and the amount of accidents she has and appears clumsy.
● Severe behavioural difficulties can be present,  can have problems controlling temper, and many people can appear passive and compliant at school, but appear very anxious at home. This describes Lou perfectly!

So where do we go now?
I’m currently testing some strategies that involve:

“a less directive and more flexible approach,” http://www.autism.org.uk

Only this morning we have tried an approach where we offer choices if Lou cannot cope with being asked to “get dressed” we then said “we’re going to leave your clothes here, you can get dressed or we’ll get Moo sorted first.
‘First’ being the operative word, make Lou spring up and collect the clothes saying: “I’ll get dressed now!”

I had used a more wordy but subtle approach with Lou last week after she demanded we go to the park and was scrutinised for “letting her control me” and “not being tough enough with her,” making me think whatever I do I’ll be judged! This is why I’m constantly researching as knowledge = understanding (which I bang on about!) But I just wish everyone could understand!

Further information.
I found that advice in getting a PDA can be found at:
www.norscaca.org.uk
At the Elizabeth Newson Centre (Autism East Midlands.)

I’m going to email for more information at

http://diagnostic-centre@autismeastmidlands.org.uk

Thanks for reading 🙂

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Pathological Demand Avoidance (PDA) and Oppositional Defiant Disorder (ODD)

Research Series:
Oppositional Defiant Disorder (ODD) and Pathological Demand Avoidance  (PDA.)

When researching ADHD, ASD and SPD I have come across ODD and PDA, particularly PDA I’ve seen a lot about recently.  I’ve not come across either of these in my childcare career, so I was keen to find out more. I’m no expert and I’m definitely not a Paediatrician! But Lou does almost tick every box of the symptoms for both, but particularly PDA. I was confused before about why she was acting in such ways and this does explain a lot. I’ve been particularly worried lately regarding Lou’s behaviour at home and recently re – referred to Family Support via a local Children’s Centre.

ODD.

Symptoms of ODD may include:

• Throwing repeated temper tantrums
• Excessively arguing with adults
• Actively refusing to comply with requests and rules
• Deliberately trying to annoy or upset others, or being easily annoyed by others
• Blaming others for your mistakes
• Having frequent outbursts of anger and resentment
• Being spiteful and seeking revenge
• Swearing or using obscene language
• Saying mean and hateful things when upset

ODD often occurs with those that have ADHD.

Source: www.webmd.boots.com

From reading these symptoms I could immediately relate to what we are currently experiencing at home.
– Lou throws up to 10 temper tantrums per day.
– She will argue with myself and partner and even pushes boundaries with my dad – who to this day I wouldn’t!
– Any requests or rules Lou is given she will usually ignore and point blank refuse. For example: “Pyjamas on” response = “no” or completely ignores and/or runs away.
– Lou will deliberately annoy and pester Moo, which she does for the majority of the day, Lou is equally annoyed if Moo enters her person space and she will usually push her away.
– Lou has anger outbursts frequently throughout the day, she will scrunch her fists together and growl loudly. Sometimes she will say “I’m really cross.” She will then often throw objects,  especially toys.
– Lou can be quite spiteful, if she’s been refused something such as food (if she’s already eaten plenty,) she will say things like “I’m going to climb over the stairgate and get it myself.” This is said in a forceful and angry manner. She will often say things like “I’m going to pick this up and hit you” if she doesn’t want to go to bed.
– We try our upmost to ensure that our children are not exposed to those who swear, which has caused a bit if controversy! But it’s for their best interests,  I don’t want Lou repeating this language, which she doesn’t understand.
– As discussed, Lou will often say hurtful things when she’s upset, these can be: “I hate you,” “don’t even look at me.”

PDA.

When looking up PDA I found the PDA society website (link below) most helpful.

People with Pathological Demand Avoidance Syndrome (PDA) will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control.

PDA is increasingly recognised as part of the autism spectrum.

Many children avoid demands to some extent, but children with PDA do so to a far greater level than is considered usual. This is why it is called pathological.

The main features of PDA are:

• Obsessively resisting ordinary demands
• Appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
• Excessive mood swings, often switching suddenly
• Comfortable (sometimes to an extreme extent) in role play and pretending
• Language delay, seemingly as a result of passivity, but often with a good degree of ‘catch-up’
• Obsessive behaviour, often focused on people rather than things.

Many parents describe their child with PDA as a ‘Jekyll and Hyde’. Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support themselves, as their children can often present severe behavioural challenges.

Source: www.pdasociety.org.uk

Many children with ASC/PDA can behave very differently with different people and in different situations.  They may be able to sufficiently hide their difficulties within the school setting and in other setting such as when visiting relatives or going to a friends house.  This can cause real difficulties for the parents because may often feel not believed, not listened to and unsupported by professionals, friends and family members.  Also this ability to mask is often at the expense of behaviour at home where the child will release this pent up anxiety.

Source: pdaguidance.wordpress.com
This article also has links to relevant information on PDA.

When reading about PDA it was like a ‘light bulb’ moment,  I’m still currently struggling to define between Lou’s difficult behaviour being due to a sensory issue or just defiant behaviour like maybe another 4 year old may also experience?

In relation to the PDA symptoms:
– Lou resists almost every ordinary demand or request (as discussed for ODD,) I find it difficult as to why she laughs and smiles when refusing to hold onto the pushchair when walking next to the road, or when she laughs and runs away wanting to be chased when it’s time to leave the park.
– Lou is very sociable, I’ve discussed in previous posts how she’s friendly to everyone and anyone, she is able to use language to impress, she copies a lot of my language and seems to be ‘an old head on young shoulders’ although she doesn’t always understand what she is saying.
– Lou has definite mood swings, she can go from really happy to angry in a few seconds. She gets extremely frustrated if things do not go her way, for example,  if she can’t get clothes off her dolls, she will fight to do it and make grunts and screams instead of asking for help. Lou will go from rolling around on the floor in full meltdown mode, to saying “I’m calm now” only a minute later!
– Lou absolutely loves role play and she will pretend to be ‘Princess Anna’ and ‘Queen Elsa,’ she talks to herself a lot and will repeat phrases she’s heard from role playing with other children. I would say that Lou does live in a bit of a fantasy world, and I can relate to this totally! I used to create senarios where I was a certain character, I was obsessed in fantasy films, and books and still am to this day!
– Lou is obsessed in Moo, she simply cannot leave her alone! If she can hear that Moo is awake from a nap she rushes upstairs full steam ahead! If they are in a room together she has to sit right next to Moo, almost sitting on top of her!

I was interested to read the article: ‘Child masks difficulties in school’ (link above,) I immediately thought “this is Lou” the fact that children with PDA can behave differently in different situations is fascinating, this is my child! Lou masks her difficulties in her childcare setting, she is better at people’s houses like my parents,  but still shows some difficulties. If I am present her behaviour is more extreme, Lou will release her anxieties from the day as soon as she reaches home. This is the reason that I’ve been fighting since Lou was 18 months old, as it has been our parenting skills that have been scrutinised constantly. I have discussed this frustration many times through previous Blog posts, and so to receive reassurance through articles, puts my mind at rest. We are extremely lucky that Lou’s new school for September are completely on board and recognise that support can be given at school so that her time at home will hopefully be more positive. I was so relieved to hear this and very greatful !

This research has proved to me even more than every behaviour has a reason, this has helped me to understand Lou more and proves to me even more that ‘research is key, knowledge is understanding.’

 

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 A girl after my own heart! “Mummy I’m just reading this story!”

Thanks for reading 🙂

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#saturdaysiblings

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We’ve had quite a tricky week with Lou in terms of behaviour, I’ve been doing a lot of work on ‘gentle hands’ with Moo and we’ve worked on a chart for kind hands. Both girls love park time, they interacted well in the large sandpit and Lou was ensuring that Moo didn’t fall over 🙂

Saturday Siblings

Count to 10!

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I’m writing this post on the back of a meltdown, all is calm(er) now but only 30 minutes ago I can only describe the scene as ‘bedlam.’ It always amazes me how Lou can go from 0 to 100 mph during a meltdown.  It was triggered by food, as I had only written a few days ago in the the post ‘I’m hungry.’ Only just after lunch and Lou is demanding food again she’s eaten an ample amount. She sees red and throws my I pad onto our hard kitchen floor, how it didn’t smash I don’t know! Because I wasn’t giving in she then yanked the stairgate clean off the kitchen, I’m surprised I’ve got any door frames left!
I have to therefore remove her to her ‘safe zone’ in her ‘calm tent.’ Immediately after I get any item she can lay her hands on thrown at me and somehow I slipped down the stairs dodging them.
I return a few minutes later to find a calm Lou,  however the reason she was quiet is because she’d been ‘exploring’ some Sudocrem she’d found and it’s been rubbed into the fairly new carpet! 
It always amazes me how Lou is so ‘Jekyll and Hyde,’ can see red one minute and the next is talking as if nothing has happened!
I have wondered to myself if it’s just me that finds this behaviour extreme, I was a shy and reserved child that wouldn’t have spoken out of place or hit out at anyone. I am a fairly calm and reserved adult, I admire Lou’s spirit and hope that she will use this spirit to not allow herself to be walked all over and to be able to stick up for herself. I do wonder if every 4 year old behaves like this at home! As I’ve only ever experienced other 4 year old’s through my work. I’m often told that “many children behave like this” but when it happens everyday, up to 10 times a day I do question it.
I imagine Lou gets the same sort of head rush that I do during one of her meltdowns, it literally feels like my brain is bouncing from one side of my skull to the other, the only way to try and get through this feeling is to:

Breathe and count to 10!

Several times! And try to stay calm!

I’m often left with a massive headache after a full – on meltdown, especially those where there is destruction. I manage that Lou feels very much the same.

So much support :)

Isn’t it strange how you can go from feeling desperate one day, then the next feel so very supported.
I had a meeting at Lou’s new school ready for September, I was absolutely overwhelmed with the strategies that are being put in place ready for her September start, I was also overwhelmed by the offer of support for her transition and what can be done over the summer holidays to support and reassure her of this big change in her life.
No judgement was made about my parenting, I was praised for doing all the background research and fighting I’d done on Lou’s behalf over the past year. It was great to bounce ideas off professionals that were completely on my side.
Roll on September!
I was so happy I almost cried!

Asking for help

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*

Today I asked for help…
I always find this is a sign of weakness on my part. I had got to the point of almost giving up my current fight for support for Lou last week. Then I look back at the hours I’ve put into this Blog in it’s 3 months, and think “just carry on, just carry on.”

As I discussed in my previous post regarding sibling jealousy, we thought that Lou’s behaviour may improve as Moo grows older and becomes on the move, walking and talking more.
In fact we find as a family, that Lou’s behaviour is in fact worse at home, I have recently described it as appalling,  and sometimes unbearable.  I love writing positive posts, I love sharing the things that are working, but I hold my hands up and say “we need help.”

We received Family Support through our local children’s centre, we were discharged in January 2016 as we came on leaps and bounds with strategies in terms of visual timetables, bedtime routine, ensuring clear and consistent boundaries and methods for calming anger and frustration,  such as using a ‘calm tent’ and squeezing a teddy whilst lying flat on her back. These methods all worked for approximately a month or 2, it’s hard to tell exactly when it started to all get a bit crazy again. I was so pleased how far we’d come as a family, so I was not wanting to admit defeat with our recent issues. Dealing with anger outbursts and flying objects at our heads is hard, Lou is so heavy to carry now so if she’s throwing objects I usually now have to remove myself and Moo from the room rather than removing Lou herself. If I place her in a ‘safe zone’ like her bedroom in her ‘calm tent’ she will pull the stairgate so hard she can lift it from the bottom and escape.

I worry (I worry a lot!) That through this behaviour, Lou is going to hurt herself if Lou, and it’s my job to protect them both. Rather than productively exploring toys such as small world houses and people, Lou will prefer to flip Moo over onto the floor and has started ‘slam dunking’ her onto her lap. If she has a strong grip on Moo I literally will have to prize her hands from the grip she has on Moo. I wonder if this occurs in all households with a child who has similar difficulties,  I often think like I need to be a ‘fly on the wall’ to see that I’m not the only one. It’s incredible how much time and energy this takes up, my partner and I have recently described our current situation as:
“2 adults that police our child’s behaviour.”
It is scary to watch Lou in full seeker mode, it’s almost like in her head you can see whizzing, she cannot be still and will climb and jump off furniture,  if you try and talk her down she cannot listen her brain is whizzing so fast she’s simply not taking the information in. She is constantly looking around for items to touch and bang on.

Lou also petrifies me near the busy road we have to cross to her Pre School setting, if she’s feeling like she needs to offload before we get home, like today,  she will sit on the path and after crossing a road will attempt to run back towards the road, not seeing any dangers. Lou wore reins until she was 3 and a half, they are now to small but I wonder what to do for the best, it’s so difficult when others her age she interacts with don’t have a need for reins anymore.

Therefore today I contacted my local children’s centre again and I self referred our family back into support, we need the help and I’m now not ashamed to admit it.
I will post again when I hear more, let’s keep fingers crossed 🙂

*Photo contains my old Blog URL.

Extreme Jealousy

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Research series
Our experiences of sibling jealousy or Rivalry.

Sibling Rivalry
What is sibling rivalry?
“Sibling rivalry is the jealousy, competition and fighting between brothers and sisters.  It is a concern for almost all parents of two or more kids. Problems often start right after the birth of the second child.”

Source:

www.med.umich.edu

We didn’t tell Lou she was going to be a big sister until I was noticeably pregnant. At about 6 months pregnant we broke the news and soon noticed a change in her behaviour. Until Moo’s birth in March 2015 Lou was the only grandchild on my side, she was the apple of everyone’s eye and was used to an audience of people with their undivided attention on her.

When Moo was born Lou had little interest in looking at her when we first brought her home. Lou was given ‘Big Sister’ T- shirts and cards to make her special. People would ask her “have you got a baby sister?” “Are you a big sister?” And “what’s your baby sister’s name? Lou would change the subject and talk about something entirely different. Sometimes she would say “baby” but she wouldn’t say her actual name for at least 6 months after her birth. Lou’s behaviour at home was tricky, she would rock the moses basket rigorously and attempt to tip over the bouncer chair that Moo was sitting in. I literally couldn’t take my eyes off them for a second. Lou started to get angry and throw objects so I’d have to shut myself and Moo inside another room behind a stair gate. I would need to watch carefully as Lou would try and grab Moo’s tiny leg if I walked past with her. I tried everything to include her with helping with bathing and getting Moo dressed, fetching nappies etc, and helping to give a bottle, but there was little or no interest. I was told that Lou has started to draw her family, she said “there’s mummy, there’s daddy and that’s Maisie Moo” – finally saying her name, Moo was drawn in black and myself, daddy and Amber were coloured blue. Lou was toilet trained before Moo was born but she did regress once Moo arrived, she wanted to have a nappy on and be “changed like a baby” as she said. We also would get the sitting down in the middle of the path as there was jealousy of Moo being in a pushchair and Lou was a big girl walking. Not even the addition of a buggy board would convince her!

I did wonder if Lou would get better once she realised Moo was here to stay! She would try and sit across people that were holding Moo, even though everyone was careful to ensure that Lou wasn’t left out. She would say “my mummy” if I was giving Moo a cuddle or a bottle and would launch the bottle away across the room. When Moo got to the age where she started crawling I’d have to act as a referee as Lou would try and pull her legs and flip her over. She wouldn’t have a clue that she was hurting her sister, even if Moo cried. Once Moo started walking I’d hope the situation would improve but the rough-housing seems to be more frequent. I will start a game and Lou will just randomly try and pick Moo up and wants to drop her, I’m unsure what her motive with this is as if I try and talk about her feelings on hurting Moo she will change the subject onto something completely different.

It is heart melting to see some great sibling moments and we really praise for times like these, Lou has a kindness towards Moo which I’m trying to build on more each day, she will break a biscuit in half and say “look mummy I shared!” I am also building on a special time of each day where I have quality 1:1 time with Lou, usually during Moo’s nap time, where I have been including activities for Lou’s ‘Sensory Diet’ including a lot of tactile and messy play. I am currently going through having to reassure Moo when Lou approaches her as she is afraid that she’s going to get hurt if she even goes near her as it’s happening so frequently, I don’t want Moo to be afraid of her sibling so I’m working on Lou using ‘kind hands’ all the time. We are still in the early stages of this. It is with great hope that the 2 girls will grow to have a positive sibling relationship we hope they can eventually share a room without Lou constantly waking Moo up! I’ve had people ask me if they think that Lou’s difficulties wouldn’t be so prominent if we’d decided to have Moo later than a 3 year gap, I was quiet taken aback, but I do think the longer Lou would have had with us and the family alone, then the harder she would have found it to accept Moo as a part of the family. I just think she’s a child who finds it difficult to share us.

I found that ‘The Sibling Support Project’ provides support for siblings of children with health, developmental and mental health concerns:

www.siblingsupport.org

I also sourced some books about having a new baby in the family from our local library, which can also been bought online, such as from Amazon:

New baby book

New baby book

And a book for parents – another to add to my wish list which us ever – growing!

Sibling Rivary

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Spectrum Sunday