“Bring Grandma” Family-Centered care

‘Family-Centered care’ it sounds so simple and so obvious.

But why it is so often completely ignored and misunderstood by the system?

Maybe it’s because the system that we are caught up in wants to treat everyone as an individual, I don’t know.

But we don’t exist alone, we exist as families, live and work and play, hurt and suffer, win and lose as families.

The family unit is like the body of Christ described in 1 corinthians 12:26 “If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.” If one member of the family is struggling with a hidden disability then every member of the family is affected in some way, it is impossible not to be.

The system seems say this…

“we will help your child in school, you will help your child at home”

Then it says is this…

“We will tell you what to do and you can do it on your own.”

and this

“There is no money for therapy, you are your child’s best therapist”

How can this be the best way to help? How can this be right?

I spent much of the first 4 years of Charlie’s life asking for professional help, for someone to recognise Charlie’s difficulties as real, for someone to step in and help and to be the professional. I had never heard of Family-Centered care, but I did my best to try to explain that that was what we, as a family desperately needed.

Everywhere I turned I was told NO, I was told that my expectations were unrealistic and that what I wanted was simply not available. I don’t easily take “no” for an answer but by this time last year, I was so incredibly frustrated, my heart was broken and I was exhausted from trying to get blood out of a stone. I hoped that getting a diagnosis would change this but honestly, as I found out much to my disappointment, it changed nothing.

But something did change, and Thank God it did because truly I was reaching breaking point.

This time last year when we were planning to meet an OT trained in sensory integration for the first time, she told me to “Bring Grandma”.

She felt that if Grandma had some time during the week when she was caring for Charlie then she should be involved in his therapy too. Radical – I know but so simple and logical, and having grandma there at that first meeting has paid massive dividends. Why? because Family centered care is so important, because families are important and because anyone who is not part of the solution can quickly become part of the problem.

Charlie’s ASD presents as “mild” or “high functioning” because of this we were told again and again by teachers and professionals that his difficulties were our fault. We were sent on parenting courses, told to discipline more, be stricter, even to starve him into eating.

If I could single out one way in which Sensory Integration Therapy impacted my life, it is that every single therapist I have ever met has treated me as part of the solution, not as part of the problem. It is so refreshing to spend time with someone who gets that your child’s difficulties are not caused by you.

In August, I read this in Lucy Jane Miller’s book Sensational Kids p61

Parents who are living with sensational children need support. They want confirmation that their children’s problems are real and difficult to live with and are not the parent’s fault. They yearn to hear that they are doing a good job and that their efforts on behalf of their children are important. Parents of children with visible handicaps get a lot of support. Parents who have a child with the “hidden handicap” of SPD need support too, but are likely to be met with stares and demeaning comments when their children act differently than other children. 

In family centered care, parents and therapists become partners who assume different but essential roles. The parents identify priorities and are the experts on their child; the therapists measure progress toward the established goals and are experts in therapeutic technique. Using a family centered model, parents and therapists together use a specializes way of thinking about everyday life in order to achieve the goals that reflect the family’s culture and values………………….

……………Just keep in mind that family centered treatment is the standard of care for intervention and is widely available. There is no reason to settle for less

When I read this I cried. There it was in writing, exactly what I needed, and exactly what I had been trying to describe to everyone for years. It had a name, and there was no reason to settle for less.

We are blessed, because our family is so supportive, and because we have finally found the family centered care we were looking for.

There are so many families, still struggling to get the help that they need from professionals who tell them that they should settle for less than the best, or worse that their parenting is the cause of their child’s difficulties.

There are also families where grandparents don’t get it, where relatives simply don’t understand, but how can they when they are not treated as part of the solution? 

Grandma made Charlie a lovely weighted blanket, which he uses every night, to sleep and can hide under when he needs to feel calm.

Then this happened, and this was awesome…

Just before Christmas my sister took the kids out for a walk and came back with Charlie sobbing crying. She said he had fallen over but was fine afterwards, then about 3 minutes later he started screaming for no apparent reason.

He kept saying that his neck hurt but there was no mark or scratch or sting.

Then we found this tiny little tiny twig in his hood.

Looks like it fell off a tree and landed in his hood, touching his neck on the way past.

twig

Poor Charlie was so upset, I was sat holding him tight on the couch, trying to get in as much deep pressure as I could.

While my mum (Grandma) was looking for a heavy blanket to wrap him in I heard her say this to my sister…

“It must have brushed him lightly, and tickled or surprised him, The OT said don’t let things tickle him cos it will hurt him, if you are going to touch him do it firmly not very lightly because that won’t hurt him”

Knowledge is power and this is awesome, this is because Family-Centered care works, and no matter what you are told “there is no reason to settle for less”.

Prenatal stress

Warning this one is going to be a tearjerker.

I am writing this because I need to process what happened and tell our story, in the hope that it will all make sense one day.

I have often wondered if prenatal stress causes some of the difficulties Charlie faces in living with ASD and SPD. If it is totally random, completely genetic, or a combination of millions of factors. I wonder if stress caused to the parents whilst the babies tiny brain is developing can cause or at least contribute to these things.

I have searched the internet for research papers in this area and found very little conclusive evidence to sway me in either direction.

Maybe the stress we went through in the pregnancy was simply bad timing or maybe it wasn’t so much the cause of the problems but Gods way of preparing my heart to receive a child with additional needs. Who knows, maybe these things remain hidden from our understanding for a reason.

Both of our pregnancies were planned and we were very blessed to have been able to get pregnant within a few months of deciding that the time was right. During my first pregnancy I was child free and so able to look after myself a little more easily, I could sleep when I needed to even if it was the middle of the day. We were both working and our home was small and affordable. Apart from me being generally hormonal, grumpy, very large and extremely uncomfortable things were fairly straight forward. Unfortunately mid way through the pregnancy we found out the my dad had terminal lung cancer, this was really tough in many ways, I desperately wanted him to get better or at least to be well for long enough to meet our little one, but unfortunately his body was not strong enough to fight the cancer this time.

He had already survived lung cancer 10 years before but that had resulted in him having one of his lungs removed. The intervening years had been a really positive time for the whole family, like a second chance at life for him, and an opportunity for him to rebuild some of the relationships that he had missed out on through years of working long hours on a factory shop floor.

But the first cancer had left his body to weak to hold on to life, as the pregnancy came to an end so did his time with us. During the last week of the pregnancy as I approached my due date he was beginning to lose consciousness, I prayed that he would hold on for long enough to meet his latest grandchild but it wasn’t meant to be.

On the night of my due date I was booked into the hospital for an induction. We had been in the waiting room for a few hours when we realised that there would be no bed available on the induction suite until maybe 3 or 4 am, and so we asked if we could go home and be with my family. We had only left the hospital for a few hours when my mum called to say that he his breathing had slowed and that he had passed away peacefully. So in the middle of the night we drove to my mums house and spent the rest of the early hours together. By the time the hospital did call at 5am to say that my bed was ready and I could still be induced if I wanted to I told them that things had changed and I was going to wait a little longer.

Thanks to Easter weekend and May bank holiday it too almost 10 days to arrange a funeral date. Lillie stayed put both of us growing ever larger. My hands and feet were incredibly swollen, I had outgrown even my largest maternity clothes and by the day of the funeral the only shoes which would go onto my feet were my husbands work boots. The funeral was beautiful and a really special time of family closeness and support. I am sure my dad would have been proud of us especially as the meal afterwards was in a local carvery, one of the only places he enjoyed eating out at.

Although the labour pains started on the morning of the funeral, Lillie finally put in an appearance 3 whole days later when she was delivered by emergency c-section. She was long and thin and managed to weigh in at an incredible 10lb 3 oz.

 

Our pregnancy with Charlie started out in much the same way, I was large and tired and grumpy, and having a 2 year old it was more difficult to take care of myself, but that was to be expected. At our 20 week scan the radiographer was concerned that there was a small cysts developing in his brain, she asked us to come back a week later to have another scan on a better machine with a more senior member of staff. I googled the cysts and learnt that their formation was a normal part of a babies brain development and that their presence didn’t really mean very much at all.

Scan

 

Charlie’s scan with Lillie’s finger, that night she went to bed holding the photo, of her already very much loved sibling.

When we returned for the second scan, the doctor found that there were 6 of these cysts in his brain and also a calcium deposit in his heart. The doctors were very concerned, they also seemed to be quite annoyed with us that we had turned down the blood test for Down syndrome which is offered earlier on in the pregnancy. We explained that even if we found out that the baby had Down’s we would never choose to terminate so we didn’t really see the point in having the test. The doctors continued on saying that they were not just concerned about Down’s but that because of the markers they had seen on the scans, they could now tell us that Charlie had a 1 in 10 chance of having a very serious genetic condition such as Edward’s syndrome which would mean that he would be stillborn or if he did survive the birth that he would die within a few days.

They felt that the wisest thing for us to do would be to have further tests, and an amniocentesis, they impressed on us that it would be important to do this immediately as the window of opportunity for a termination before 24 weeks was very short.

I was shocked, we had already told them that a termination was not an option, even if the baby did turn out to have Edward’s or something similar, that we would continue with the pregnancy. We said that we may consider an amniocentesis later on in the pregnancy if we decided that we did want to have the information before birth but that we would not consider it before 24 weeks for 2 reasons, firstly in the small risk that it could cause a miscarriage and that before 24 weeks the hospital would be powerless to save the child and also we didn’t want to hear anymore about terminations.

I had that horrible feeling of time standing still, the one where you can clearly remember the room and how it looked, where you were sitting, the colour and smell of the place, stupid detail like which posters were on the walls or leaflets on the tables, like it is burnt into my mind. The doctor who was with us (the one with the horrible black boots that are also burnt into my mind for some unknown reason) simply told us to enjoy the rest of our pregnancy and left the room.

I would like to say that I joyfully returned to work and got on with enjoying the rest of my pregnancy and convinced myself that 10% was a really small number, that my faith carried me through without so much as a moment of worry about what it would be like to have a severely disabled child or how I would explain to Lillie that the baby that is coming to live in our house might not actually ever make it home. But that would be a lie, even with lots of faith and a strong support network of family and friends some things are still really hard to carry. Our faith does not shield us from the traumas of this life but it does give us someone to turn to when our strength is failing us.

Within a few weeks of the scan  a second blow came when my maternal grandfather was diagnosed with the exact same cancer that my dad had died of 3 years earlier, it was in the exact same place in his body and I was in the exact same time of my pregnancy.

While I was still wondering how on earth I was going to do all this and still hold things together our landlords gave us notice that they would need us to move out of the house we were living in within a few weeks of the birth and find somewhere else to live.

 

I honestly do not remember how I got through the weeks surrounding christmas and new year, we somehow put in a mortgage application and viewed only one house to buy. We had an amniocentesis at 34 weeks and when the results came back all clear at 36 weeks I fell apart emotionally not really understanding the weight of what I had been carrying around with me.

We packed boxes ready to move house right after the birth, exchanged contracts the day before Charlie’s due date, and completed when he was less than 2 weeks old.

holding hands

 

This photo was taken the day after charlie’s birth, it is an incredibly emotional image for us and we have it blown up as a canvas on our wall. It is Charlie’s tiny new born hand holding onto his great grandfathers, for us it is a miracle that on that day they were both well enough to be able to enjoy eachothers company.

It is a reminder to us of God’s faithfulness no matter what challenges we face. Although we may hold onto his hand with all our strength, like a baby instinctively grabs onto a finger, what we often don’t see is that outside of the frame of the photograph his strong arms are cradling us holding us safely and gently.

 

Back to work

It is so easy to do too much and expect too much of ourselves. Let me confess I often fall head first into this trap.

I have very high expectations of myself, and it is easy, way to easy to push myself so hard that I don’t even know when to stop.

I constantly juggle work, home, kids, church, school, business, finance, neighbours, special needs support groups, charity work, meetings, cleaning, shopping the list goes on and on. I often feel like I have somehow managed to get myself onto a treadmill that can’t be slowed down. I feel like I just have to keep going because if I don’t then… I don’t even know what will happen.

Its important to keep things real, and part of that is acknowledging when things are too much.

Since the summer I have known that I was burnt out and needed a break, but because of the crisis at work, everyone was putting in 110% and it just wasn’t fair or realistic for me to take annual leave. So every day, and for far more days than I should have, I would turn up and keep trying to give my best and to keep up, and every day I was less effective and more overwhelmed.

Until suddenly it was all just a mess.

Why am I sharing this? well because I know I am not the only one who does this, who feels responsible for everything, who takes on too much, who has forgotten how to say “No”. It happens too easily, we take on things one at a time and the world sells us the lie that we can have it all, we can do it all, we can be all things to all men.

That we are supermums who can do the impossible.

Its not true…

I am learning (the hard way) to set boundaries, to know when enough is enough and to stand my ground.

I have had 2 weeks at home, trying to get my head together. I have rearranged my furniture because that always makes me feel better, and I have taken some time to enjoy small things like decorating the tree with the kids, and sharing a meal with our neighbours, and watching a few episodes of Miranda.

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This week I have gone back to work with a clearer mind, and more realistic expectations of myself, I have moved my desk to a quieter and more brightly lit location where I am hoping it will be easier to work, and I have reduced my hours so that I have one guaranteed full day at home every week.

I have to remind myself that it is important to look after me as well. I can’t be a good mother and wife and employee and everything else if I am limping along half exhausted. So once again I am going to give myself a fresh start and attempt to do less.

A day in the life…

 

So here is is for all of you who haven’t been able to see the original article. I did e-mail the editor and ask for permission to publish this over a week ago, and I have heard nothing so I am hoping that its ok to do this…

If you want to see the article in context you need to visit SI Network and pay the £15 membership fee, its not much and if you are interested in learning more about the therapy we use to help Charlie and how you could use it too I would urge you to join.

SInetwork

Charlie is an early riser and morning person, normally up and wide awake by 6am. Sometimes he has made it through the night in his own bed but mostly he has joined us in our bed at some point. Charlie loves to snuggle, he finds something calming in being under a heavy duvet squished between his parents. 
 “Where -illy?” Charlie asks looking for his beloved playmate and older sister Lillie, but she is still sleeping, and is not such a morning person so we leave her in bed for a little longer. 
 
 We start the day with Charlie’s tactile input. He knows the routine we have done for the last 9 months and happily joins in. “Which arm?” I ask and he willingly extends the right one and laughs. In the quiet of the mornings, he is happy and relaxed.
 
 Charlie loves breakfast. For the last 3 years, he has lived on a very limited diet of Cheerios and milk, toast and butter and certain brands of fruit juice, but today he wants cream crackers and butter. It’s a variation on a theme but still well within his comfort zone. He drinks his fruit juice through a straw, another small adaptation which has become part of our routine, and in my pre-coffee haze, I’m not really thinking about why it helps him, but I know it does. We sit together at the table, I drink my coffee and he munches away happily on the same kind of bland beige foods he has eaten for every meal of every day for the last 3 years. It doesn’t bother him as much as it bothers me, but I try my best not to let him know.

After breakfast if I am awake enough, we do some therapy exercises, commando crawling on our tummies, throwing and catching on our knees- or if it’s dry outside, we might bounce on the trampoline together and pretend to be power rangers. Sensory integration is fun but I’m sure my neighbours must wonder if I am crazy. Charlie wants to play on the Wii or watch TV but he knows that we have a rule that kids are not allowed screens until they are both dressed and fed, ready for school, so he goes to fetch his sister. 
 
 Charlie wears his uniform-it’s a soft polo shirt and we found some second hand well washed school trousers; he still needs some help to get it on but is beginning to attempt to dress independently. We leave his socks and shoes until the last minute before we leave the door, even with his socks on inside out he still finds it uncomfortable, so we try to minimise the time he has to wear them. 
 
 Lillie dresses independently and wants something different for breakfast again; she is as wildly adventurous with her eating as he is limited. We settle on yet another new kind of breakfast cereal. Lillie helps her dad make the lunches, in stark contrast to Charlie she loves variety of flavour and colour, spicy pepperoni is a special treat for her, and she adds some cherry tomatoes and cucumber slices to her box. Charlie’s box consists of only the foods he is comfortable with: more Cheerios, dry biscuits, more crackers, a bag of transformer snacks – currently the only crisp like snack he will tolerate, and a juice box with a straw. The same lunch every day. I’m glad that the school are understanding, and don’t insist on only “healthy” foods. When your child won’t eat in a typical way, it is easy to feel judged by others – even those who mean to be helpful. 
 
 We brush Lillie’s hair and tie it back in a ponytail. I look at Charlie’s hair and kind of wish I could fix it, but there is no chance. When I reach over to move a particularly unruly piece of hair that is sticking out. I am quickly reminded of the rules as he shouts in a voice which is suddenly anxious: “Noooo!! no touching my hair mummy, you hurting Charlie” I apologise and wonder if any of the other parents or teachers will notice that we never brush or wash his hair, or if they notice the slightly wonky hairstyle which is caused by my new found skill of night time haircuts while he sleeps.

sensornet2

While the kids get their screen time, I get my 10 minutes to run upstairs grab a quick wash and change into my work clothes. By the time I get down my husband has already repeated Charlie’s tactile routine, got the kids into their coats and shoes and we are ready to start loading them into the car. Charlie is ready with his coat hood up and a little umbrella in his hand just in case it suddenly starts raining on the 10 metre walk to the car. We do live in the north of England so this is a possibility! His ear defenders, spare clothes and therapy brush are packed into his school bag. We don’t hesitate or stop during the transition pausing or changing the plan now would cause Charlie to feel more distressed. Loading and unloading the car used to be a major battleground for our family, and would regularly result in one or more of us having a meltdown, and yes sometimes I would join in with the crying too.

I had no idea that wind, rain, socks, a passing truck, or a combination of all 4 could cause so much stress and chaos. I can hardly believe how much progress we have made in the last year. I clearly remember what life was like the days before I had ever heard the words sensory integration, back when I thought that an OT was someone who helped old people to walk or live at home again after a hip replacement. I remember the screaming and the fussing, and I appreciate every little victory we have in ways that typical families may never understand. 
 
 We are blessed that Charlie has a place in a school which understand his needs, the teachers are ready with toast and butter for the days when breakfast hasn’t been so successful. They incorporate lots of soft play, messy play and even swimming into his school day, and they remember that socks must always be on inside out. He has only been given only one year in this school while he is assessed and we had to fight to get it.  We are not sure where he will go next year or if at some point in the future he will be able to manage in the same school as his sister.

My work day is shortened to fit into school hours and I eat my lunch at my desk or in a meeting, so that I can leave earlier than my colleagues to be able to get the kids out of school. I am lucky that my manager is flexible and understanding, I love my job. I work with very needy people, during a time of crisis in their lives, but it is draining and by the time I get the kids out of their separate schools and we get home I am starting to feel it. Lillie chats happily about all her friends and their plans, she complains about doing her homework and the unfairness of spelling tests, as much as I agree with her I can’t let her know. I try to extract some information from Charlie, but apparently all he did all day was “run with Callum.” I dig his link book out of his bag and I am grateful that the teachers take the time to include some more meaningful information about his day in there, I read about what he has eaten, the activities he engaged with and how his pre- reading skills are developing. 
 
 Once home I chase the kids away from the many screens that they are so attracted to. We encourage our kids to do things in our house that other people might find a bit too permissive – jumping on the sofas, riding the scooter indoors, swinging in the loft, attempting to do a headstand or jumping between beds are all good activities, but they still love the screens and it’s hard to find the right balance. 
 
 For dinner my wonderful husband has made Spaghetti Bolognese he is gifted in the kitchen and we love our food, we cook from scratch and include lots of international flavours in our menu. Plain spaghetti along with plain white rice are both recent additions to Charlie’s short list of beige foods which he will eat, but tonight he is not interested in joining us, he asks for transformer snacks, we say no. So he wanders off to play with Lego.

We have learnt not to react; sometimes he will sit at the table; sometimes it is just too much for him, and I know he will probably eat later when it’s quieter and darker and after he has had some deep pressure or proprioceptive input. Our new vocabulary is almost as impressive as the change in our perception of the situation.

After dinner, things look pretty much like I imagine they would in any household with two primary school aged children. The tactile routine continues alongside homework and computers, play-doh and a squabble over which TV channel to watch or some toy that has suddenly become very popular again.

Bath time is Charlie’s favourite; the kids are still young enough to bathe together which is fun. He likes the bath deep and fairly cool. We have taught him to wear goggles and swim under the water face first, that way at least his hair gets wet. On the days that won’t work we let them splash the water as much as possible to get him used to it. Suddenly the deep bath water works it’s magic and he decides he wants to eat the spaghetti. Is it ok to eat spaghetti in the bath? I have no idea, maybe one day when I have time I will call one of my lovely OTs and ask them, but until then I’m just glad that something is going into his stomach. When the spaghetti is finished we let the kids play with shaving foam. Charlie likes the idea of shaving foam, but up to now only in the bath where his body is relaxed and he can wash it quickly off his hands when it becomes too much.

Finally, bedtime comes. We read a story, brush teeth (another small victory) and Charlie snuggles up in his sister’s bed. She has a memory foam mattress which she inherited from us, and Charlie brings his weighted blanket which my very talented mum made for Him. We allow the kids to watch a short Disney film on the old VHS player in their room. We say goodnight and give lots of hugs and kisses. 
 
 I don’t often make plans for the evening. It’s not that I can’t leave the kids with a sitter- they are really very well behaved for other people and we have some wonderful trustworthy friends but I am so very tired by the time that they are in bed. My bed looks so inviting by 8pm that I just give into temptation and get into it. I wonder about the spaghetti in the bath thing but I’m too tired to call anyone, so the question can wait for another day.

 

 

Why am I calling my kids Lillie and Charlie?

Psalm 127:3-5

New International Version (NIV)

3 Children are a heritage from the Lord,
offspring a reward from him.
4 Like arrows in the hands of a warrior
are children born in one’s youth.
5 Blessed is the man
whose quiver is full of them.
They will not be put to shame
when they contend with their opponents in court.

Lillie and Charlie

I want to a talk about lots of things on here. Because our children make up such a large part of our lives and who I am at the moment I’m sure that a fair chunk of what I am going to say will be about them. Children really are the most amazing little beings, funny, cute, sweet, energetic but also challenging at the same time. They do things to me, and provoke emotions in me that I could never have predicted. I have never been so stretched in all areas of my life like I have since I became a mother, it’s becoming hard to remember what my comfort zone looks like.

I have been following a number of other bloggers for some time now and I have noticed that they seem to be fairly sensible in terms of protecting their kid’s security on-line. I want to be sensible too, I want to share my story but I don’t want to do it in a way that will embarrass them as they grow up.

This morning I talked to my daughter about my new project and explained what a blog is, I talked to her about telling our story but about guarding our privacy and safety. Its never too young to start a conversation with our kids about personal safety on-line, and this is something we have talked about with her before. It’s also never too soon to start having some guidelines about where, when and how much the internet can be used at home. I find it unbelievable that there are chat rooms marketed specifically at kids, this starts from the day they learn to read and write. My kids tell me that these chat rooms are safe places as they are only for children, this raises a massive red flag for me, and so for now chat rooms out out of bounds.

I asked her to choose a name she would like me to use for her, she picked Lillie. It’s interesting because that was one of the names on the short list before she was born. She wanted her brother to be called Harry, I suspect because of some cute boy from 1-direction rather than anyone in the British royal family, however to my surprise he piped in with “I’ll be Charlie”. So in the interests of fairness, we let him choose his own name too. I was quite proud of them that they chose such normal names, I wasn’t expecting that. Hopefully in the future when they are naming my Grandkids they will be as sensible.

So from now on in Blogland and on our cheerios milk and spoon facebook page my kids will be known henceforth as Lillie and Charlie. The names the kids have chosen are totally meaningless, unlike their names in real life which have deeply personal and specific meanings. If you are part of our lives in the real world and you know our kids names we would really appreciate it if you can please respect their privacy when commenting etc.

So let me introduce you to my little lovelies…

Lillie is 7, she loves shopping and moshi monsters and all things princess and girly. Charlie is 4 years old, he loves angry birds, lego, ninjas and all things Star Wars. Charlie is our selective eater, and along our journey to find answers as to why he struggles so much with food and how we can best help him he has been diagnosed with Autistic Spectrum Disorder and Sensory Processing Disorder.

We are blessed to have sociable, healthy children who get along well with each other most of the time. I hope you will enjoy getting to know them better.