Helping Olive to thrive & grow…..

I just want to emphasise how important therapy intervention is for Olive, to help her to maintain the skills she has & to  develop new ones. Olive has a multi-disciplinary team that work to ensure she is getting the individualised support she really needs to give her the best health & opportunities to enjoy her life. This includes physiotherapy, occupational therapy & speech & language therapy. We also compliment that with swimming, riding for the disabled, Osteopathy, reflexology & massage.

The first intervention I want to talk about is communication. This is likely to be a lengthy post, however I will try to keep it as short as possible. One of Olives biggest disability’s as a result of having Rett Syndrome is APRAXIA. This is not having the ability to  follow through a cognitive intent. As a result Olive can not control the muscles in her body very well, the signals either do not get through or not get through in the right order. Motor planning is a huge difficulty for her. It takes 72 muscles to speak a single word. It takes 49 muscles to cry. It takes 38 muscles to shout. Olive has difficulty doing all of those types of communicating. However we have worked hard to try to find strategies that will help us to understand her & give her opportunities to express her needs & wants & communicate with the world around her.

Here is a video from rett education, please watch to help you understand…..

We use a variety of strategies with Olive. Auditory scanning, partner assisted scanning & alternative augmentative communication, together they will hopefully give Olive the ability to learn communication strategies that will give her back a voice. I just wanted to explain  a little more here:

Yes & no

We have been working on helping Olive develop her ability to answer a question for some time. As a result we are finding it extremely useful. Olive has several ways of trying to answer with a yes, APRAXIA  makes it hard for Olive to be consistent. We can help her by being patient & making it fun & easy, this way she doesn’t feel the pressure so much. Olive leans forward for yes, or can sometimes shout for yes or looks straight at you with a very YES look in her eyes or a big smile if its a good yes. What I mean by that is if I ask Olive a question like “does your tummy hurt Olive?”,then I know she’s not going to look at me with a smile for yes. If I ask her a question like “do you want to watch Annie Olive?”, then she is likely to look at me with a smile for yes.The absence of a yes we take as a no. We try to  feed back to her what we took as a yes or a no so she is learning that this is how people are reading her.

No Tech: Body language & natural eye gaze

When you get to know Olive you can easily get in tune with her & she will  know if you are getting her & will then make the effort to interact with you. This interaction for me is a beautiful shared experience & something I adore every day. You can easily tell if Olive is in a good place by her body language. Intense handwringing, teeth grinding, irregular breathing & crying are an indication that something is wrong. Smiles, normal breathing & less handwringing are all signs that Olive is in a good place. It takes patience, time & understanding to get Olives natural intentions to communicate, actually understanding these alone can really help Olive to feel reassured & connected. Olive loves to share things that are important to her with people she meets. She can do this through a variety of communication strategies, swapping between them as necessary. We often upload photos to Olives talker (eye gaze computer) which allow her to share her experiences with others. Here is an example of Olive sharing some news about a man she met at a local tea rooms, she was quite taken with this man, I wish I could of taken him home actually. A few days later, I helped her to share her news with one of her teachers about the kind man she had met that took a little time to interact with her. You can see the response when I say his name, her face lights up & we get a big head forward for “yes his name was Geoff”.

 

We also use partner assisted scanning with no tech & partner assisted scanning with visual choices, for the purpose of this post I am not going to go through them on here. However you can click on this link to find out  more.

Alternative Augmentative communication/Olives talker/eye gaze computer/Tobii I series

It is great that we are able to learn so much every day about Olive through these very simple & easy to use techniques. However its not enough for autonomous communication, for example if I am asking a question that has nothing to do with what Olive is wanting to express, then we could be asking 50 questions until we get somewhere close to what she wants to say. This is why we are investing time in helping Olive learn a language now that will hopefully give her the ability to have more vocabulary that she can access independently through using a Tobii eye gaze device. I could write so much about this, but for the purpose of this post I just want to keep it simple.  If you are unsure about what her talker is please read this previous post. If Olive has her talker in front of her, you could always just kneel down to Olive, so she can see you & you can see her reaction. We like to model the language/symbols on her talker, this will expose her to the language & give her the ability to learn to use it independently. Olive has a great page on her talker ‘new people’ where she can ask new people questions to help her engage & interact. She loves interacting with boys & men especially I think… !!!

 

Gastronomical issues

Olive can no longer feed herself. She still enjoys her food & can eat a variety of solids with the help of a partner. Olive needs a high calorie diet that is well balanced. One of the big symptoms of Rett syndrome is constipation. We are better at  managing it now, but somehow it still creeps up on Olive & causes her days of discomfort. For that reason we are constantly trying to ensure she has a well balanced diet, with plenty of fluids, fibre & healthy calories. We implement a toilet training program at home & at school,  Olive does really well at doing her motions in the toilet when given that routine & opportunity. A slip in the routine can easily knock everything out of sink & cause Olive to have discomfort. Reflux & trapped wind is also closely related to the diet, we are unsure how this is managed as we are still to researching this, Olive’s symptoms are settling down, however she does have regular spouts of wind which we are trying to help her with.

We are working with Olives Occupational therapist & speech & language to map a feeding plan that can be followed through consistently at school & home, with the hope of Olive maybe being able to self feed one day or at least initiate some of that.

Mobility

Motor problems are huge in Rett Syndrome, balance, spatial disorientation, Ataxia, tremors, hypotonia, hypertonia, spasticity, rigidity & dystonia. Olive currently has huge problems with motor planning , spacial awareness & balance, she has some rigidity & hypertonia.

Deformatives are common in Rett Syndrome for many reasons. The most common are curvature of the spine, hip dislocation & fractures.

Olive has weekly Physiotherapy sessions as well as daily routines that are followed through. Olive has tight hips & ankles, daily stretches help with this. We try to incorporate developing her independence by always getting her to do the transitioning off the floor, this takes a lot of time & patience as you need to help her facilitate it. However we have seen the benefits this constant support & repetition has with her very steady progress, so we are working with her team to ensure this support can be consistently carried through on a daily basis.

Swimming

Olive has been swimming weekly since she was approx 4 months old. We are so grateful to Olives Aunty Louise for supporting us with this. It has enabled us to ensure Olive & Tilda take part in a weekly swimming/play session together. The water also has huge therapy benefits for Olive. Because she has been going since such a young age, she is very comfortable in the water. It allows her to feel more free. It seems that it takes away some  of the fear which comes with spacial awareness issues, which in return allows her to relax more in the water. Olive has been known to walk 6 lengths of the pool with a big smile on her face, clearly so surprised & pleased with herself.

 

Riding for the disabled

Olive attends a weekly riding for the disabled session with Tilda. She has been doing this for two years now. It is a great opportunity for her to enjoy being free on the horse sitting independently & taking part in activities of play with her sister. It is also great for core strength . We are very lucky to have local teams of very dedicated volunteers that all make this possible.

Standing frame

Olive has recently been given a standing frame. Her program is to stand in the frame at two opportunities each day for approx 30 minutes. The purpose is to give her more opportunities to stand, helping her to be in the mid-line  position more of the day to help her with her balance.

Supported high chair

Olive sits in a wonderful supported Jenx Junior high chair that gives her bilateral support aswel as the ability to strap her flailing feet in. This helps support a good seating position to prevent deformities.

Hand splints

Olive has a  really strong need to hand wring & does so in such a repetitive way that she is distorting her fingers & actually  twisting them. As a preventative measure we are using hand splints to prevent her from doing this all day long.

Osteopathy

Olive has been seeing  an Osteopath for approx 2 years now. She visits Wendy Dove once a month. You can read more about the benefits here in this previous blog post.

Inclusion & emotional well-being

Olive suffers with anxiety daily. We have been working really hard to help her with this. We do have a solution  of letting her watch her favorite programs, however we feel it is really important for Olive to be able to have other strategies that will support her. It is not ideal to be walking around a supermarket with Olive watching Ben & Holly, or walking around John lewis with an I phone playing The film Annie tucked down the side of  her wheelchair. Instead I would much prefer to be talking to Olive about what we are doing as I would with Tilda.

We use vaporiser aromatherapy oils at home in the day & at night. We use reflexology & massage to help Olive relax at night. We talk to Olive using some elements taken form the Alert program, using the colours  green, yellow & red to help Olive recognise when she is becoming unregulated & help her to self navigate her way back with the support of an adult, to help talk her through getting back to feeling calm.

We have learnt so much about Olive recently, how she loves to interact & how she loves to be included. Only today she was able to tell us she wanted a pink lamp next to her bed like Tilda’s, did I feel bad that she didn’t already have one?… ‘yes’… but I am learning  all the time too, to be inclusive & to treat Olive just the same as Tilda. Actually that has been a real learning curve & plays a huge part in Olives therapy intervention. Having the ability to naturally include Olive, to help her access playing with the other children, to help her learn in different ways. We have learnt how important it is for Olive to help her rejoice in her achievements, whether it be that she pulled to standing or used her talker or managed to show us yes. Its important that she has lots of opportunities everyday to show us her wants, express her needs, learn new things, converse with people & meet new people.

I really hope this has been useful for anyone wanting to help support Olive. This advice is not just for Olive, infact it is not just for children suffering with rett syndrome, it is for anyone suffering with a disability every day that disconnects them from the world around them.

Education

We are very lucky that Olives school has been so supportive. We have been consulting with  specialist rett syndrome teacher Susan Norwel. We also feel very blessed that Olive has a wonderful TA that is equipping herself  with the necessary skills to support Olive.  Olive has an IEP, which is devised from the EYFS programme to ensure her abilities are being measured independently & strategies are being devised to uncover what she is understanding & learning, but also finding strategies to ensure Olive has the same experience as much as possible as typically developing children her age.

I know this all sounds very regimented & tasking, & it certainly is not easy, however it really is necessary to ensure Olive is supported both physically & emotionally.

Despite having to continually work hard to find ways to sustain this amount of intervention, we are very hopeful about Olives future. We feel so lucky to have such a supportive community for Olive to grow up in. We are very hopeful that Olivie will make lots of new communication partners & will be able to share many more of her stories with others.

 

I played this slideshow in my last post, but I just want to play it again as a celebration of how proud I am of our little Olive & how well she is doing as a result of everyone’s support.

Perspective & finding our fairy tale world

This post is about a few aspects of our life with Rett Syndrome. I know it is Olive that suffers daily with Rett Syndrome. However it is her immediate family that also live with it every day too.  We were so devastated 2 1/2 years ago about the prospects for Olives future, the heartbreak was enormous. We felt powerless, then there was the possibility of hope.

The life we had imagined was shattered overnight, our dreams were just a memory. When we heard about the possibility of a cure, we threw so much energy into supporting this, then family & friends did the same, we are so very grateful to each & every person that has organised an event. That has sponsored someone,  & that has raised awareness for rett syndrome. The support we have received with the fundraising has been overwhelming & we are forever grateful for that.

Today our perspective is different. That initial helpless feeling that we cant do anything to change this has gone. We have worked really hard researching about the best therapy interventions to support Olive. As a result we are learning so much about our daughter every day, we are learning that she wants to be heard today, she wants to be included & she wants to be like every other typically developing 4 year old child. We have come to the conclusion that we do not need to feel helpless, on the contrary, we are very much needed to support Olive in every day life & we have seen the positive results that can be achieved with this positive mindset. Don’t get me wrong that heartbreak is still there everyday, its really difficult to explain & put into words. We are in a constant healing process, every time Olive lets out a giggle a small part of me heals, then every time I see her struggling to say her words it wrenches at my heart.

Olive is such a blessing & we feel so lucky to have her in our lives. However we are struggling every day to keep up with the amount of support she needs to ensure she has the most full-filling life possible. We are working hard with her support team to ensure this therapy intervention is sustainable & done in a way that is consistent & meaningful to Olive’s life. I feel it would only be fair to all those of you that have followed Olives journey to conclude this blog post with a further post  that describes in more detail the support program I am talking about & how Olive is doing with that.

For now I just want to explain our intentions. We will be closing down the Olive Beaumont Foundation web-site over the next few months for a while. The reason for this is to create more space & time in our life to devote to our family, To allow us to really cultivate the life we always wanted while still ensuring Olive gets the support she really needs on a daily basis.

We are working hard to practice raising our family to have resilience & hope, & to have the spirit that will carry us through the doubt & fear.

Olive is at mainstream pre-school with Tilda. We know there are many aspects of Olives disability that make her different from the other children. We are working hard with the school to ensure that Olive is included & has access to the same experiences as the other children.

For Olive the focus of her everyday life isn’t about fundraising for her to be fixed. Its for her to work with her suport to by-pass her disabilities to find ways to help her enjoy being a child. As she gets Older we can explain to her that there might be a possibility of treatment for her. For now we beleive she understands everything & that these early years are so important to shape us into the people we become as adults. We want Olive to feel empowered to do her best, she knows she has difficulties doing things, we want to encourage her to rejoice the days when she surprises herself & us by the wonderful things she can do. We do not want to belittle her or feel sorry for her because we do not want her to feel she is not good enough the way she is. Olive is unique & very special, we always want her to know this & empower her to show us who she is & feel comfortable with who she is. We know she will be frustrated to a certain extent watching others do things she can not do.  It is amazing though how human nature naturally helps us to accept what we are born with.

The best things family & friends can do for Olive today is to help her to be included. As Olive grows up with her friends, we are hopeful that she will be accepted just the way she is & people will learn how to communicate with her to be able to include her.

We will be moving house in July. We currently endure 15 steps up to our front door carrying Olive.  Somedays the effort to leave the house is just too much.  However we are very lucky  that we will be moving to a new home that is purpose built for disability, offering us the chance to live a life that is more sustainable.

 

I urge you to make a note of our chosen charities & if in the future you would like to support them than that is wonderful. Every penny that go’s to research is helping bring treatment or a cure for rett syndrome closer to Olive & all the girls suffering worldwide daily. We really are just making the decision not to be directly involved. It go’s without saying that we will continue to be grateful for every things that people do to raise money for Rett Syndrome research. We are still very hopeful that treatment will arrive in a timescale that is beneficial for Olive.

Our goals are to enjoy the now, to savoir the precious moments that can be found in every day life, this can only be done if life is at a pace that allows you to see & absorb the beauty & love that surrounds us today. The way Rett syndrome has impacted our life has been huge & diverse in so many ways, it has given Olive a life less ordinary, it has taken away so much from both Olive & Tilda, it has given us  the skills we need to ensure we can be the parents we need to be for Olive.  It has changed so many relationship dynamics with friends & family. It has also bought some very wonderful people into our life.

Its not a goodbye, just an update & closure for us for a while, if you read my next blog post, you will see there are lots of little daily kind acts that you can do to support Olive or a child living with Rett Syndrome.

We hope to see you at the reverse festival in June.

Rett Education

The legend of Susan Norwell: what she taught us…….

 

I am so proud to be a part of this event. The first Rett education conference will take place in Birmingham at La tour hotel Friday 11th July (professional day) & sat 12th July (parents day).

 

Can you even imagine not being able to communicate your needs, being trapped in a body that continues to fail you & not do what you want it to do. This is the reality for my  little Olive & all those suffering  from the cruel symptoms of Rett Syndrome. This is why we have worked hard to bring this conference together.

We were very fortunate to travel to a world conference in March 2012 organised by IRSF. We heard the good news that research is very much progressing & many scientists/researchers, charities & organisation’s are working tirelessly to fund vital research that will hopefully one day bring treatment to the doorsteps of those families & children that so desperately need it.

This is also where we learnt that girls with rett syndrome are smart, they have good brains & they want to engage, be included & learn. It was at this conference that we had the  privilege of listening to Susan Norwells workshops.

This was a pivotal moment in our journey with rett syndrome.  We were both enthused with hope & aspiration for our daughters future, we were given a torch to guide us.

We ventured back to the uk, feeling so energized.

It has been a tough few years, dealing with Rett syndrome was never gonna be easy, watching your daughter become more & more trapped in her body is heartbreaking. Trying to convince the professionals that  more that can be done to intervene & support Olive has been exhausting. However we are somewhere closer, closer to giving Olive more opportunities, closer to building therapeutic intervention into our lives, closer to sharing the good news. Today Olive is more engaging; she is very much alert & included.

Low res 1

 

Today we feel very much supported by her therapists & we know Olive feels much more understood.

Low res 2

 

Susan Norwell was able to give us communication strategies that really do work. Rett Syndrome is so devastatingly debilitating  & affects every child differently. However with the right support at the right pace, these girls can be more understood, they can be more included & they can learn to show us who they are. Susan really helped us to understand APRAXIA & how it has manifested itself in Olive.

Low res 3

 

This is what Rett Education is all about, sharing  the good news, sharing  the wonderful knowledge of Susan Norwell about how to support a family & child with living rett syndrome.

 

 

 

 

Please click on this link for more information & how to register,  share with your family & therapists…………….We hope to see you there………..

I am actually Here

We have been on a steep learning curve in the last 2 1/2 years. Learning about Rett Syndrome & watching our daughter regress. Rett Syndrome is a severe movement disorder. Girls & women who suffer from Rett Syndrome are living trapped in their own bodies.

Too many times people talk about Olive like she can not understand or isn’t there.  I just wanted to point out that Olive is listening, she is very much present, but her body does not allow her to express herself very well at all, this is not because she doesn’t want to or because she in not trying. Olive requires tons of attention & support to see her through each day & help her play,  communicate & engage with the world around her.

The other day at school a fellow mum said she had read this post about Olives talker & asked me how it works. Thankyou so much Helen for taking the time to ask me.  I am so happy answering any questions about how Olive communicates, just e-mail me: janie@olivebeaumontfoundation.co.uk.  I really appreciate it when people want to learn more about Olive & how she is learning to communicate.

So for the record:

  • Olive has good hearing
  • Olive is understanding you
  • Olive suffers from severe Apraxia
  • Olive is a typical nearly 4 year old with a severe motor disorder
  • Olive has feelings

Please do not feel awkward with Olive & please respect her.  She wants to be included & loved just like any other little girl.

LOwer res

 

Tobii talker & update….

A family member asked me if Olives talker/Tobii was a tape recorder. So I though It would be useful for me to post a video here of Olive using it. ‘family member’ if you are reading please please do not feel bad for asking this, I appreciate your honest question & I am sure a lot of people will feel better informed after watching the videos below. The first video is of me asking Olive if she would like to talk, I am kinda using a method called intensive interaction. The second video is combining a few communication methods. We  use symbols, partner assisted scanning, auditory scanning & of course, her talker which is a tobii I series device. All of these modes of communication that cross over & can be used in the same conversation as you can see some being used in the video.

I will not be posting this year very frequently, Linking back to my previous post about making space to our life to allow us to use Olives talker, we really need to slow down to allow for that to happen. Then also linking back to my new year post, to allow for more peace in our life.

I warn you the videos are not embellished, they are RAW, authentic & real, Olive was off sick from pre-school with a cold, so she is a bit snotty & we are both undressed & unwashed……hence why I am trying to stay out of the frame……I mean in our PJ,s…….  thats just the way we roll these days sometimes….

The second video is a bit long, but if you really want to learn its worth watching & appreciating how beautiful it is to be able to connect with Olive like this, she does such a wonderful job & I am sure you will agree she is adorble.

Sorry I am not writing more about the communication methods we are using, but hopefully if any parents or profesionals  need to find out more the links will help. Susan Norwel has recently launched the rett university which will make her great teaching skills accessible to everyone worldwide via webinars. Also hopefully this July Susan Norwell will be here in person to present at a communication conference.

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