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… !!!
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.
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.
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.
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.
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.
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.
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.