A Moment on Meltdowns

About 4 years ago we were driving to church and had to wait in some traffic to park (we went to a rather large church). In order to speed things up, I took my daughter out the car and walked into the church to an agreed meeting place. The problem was this place was busier than expected and noisy than I would have liked. The trouble came when I had too much stuff to pick up my daughter and carry her out of the room and my phone battery had died. By the time my husband found us, my daughter was hiding under her toy buggy (part of the carrying problem) and crying hysterically. To a casual onlooker this probably looked like a temper tantrum, but in actual fact it was a meltdown. I am sure someone must have walked passed and judged either my parenting or my daughter’s behaviour, but in fact neither was the issue here (accept maybe agreeing to take the buggy with us in the first place, thus rendering myself incapable of carrying everything).

I have written a long post about Sensory Meltdowns in the past, but a friend has asked my husband and I about how we cope with them and so this is written in an effort to answer that. My children do have tantrums, my son had a higher propensity for them than my daughter, but I certainly have experienced those. The “I want a Lego toy and I want it now!” screaming is relatively easy to deal with, you just don’t give in and pretty soon my children have learned that tantrums don’t work.

A meltdown is a totally different animal, you can see it coming. It generally involves noise, bright lights and sensory overload. Add not enough sleep or some sugar and you have a perfect storm headed your way. A meltdown can be of a tantrum persuasion (“I want that NOW”), which makes it a tricky one to deal with as you still cannot give in, but the child’s ability to be sensible is zero. I think most parents have experienced these. It is part and parcel of being a parent with a young child (all young children get into sensory overload at some point).

In our experience though, sensory meltdowns without a tantrum attached contain pure raw, unfettered emotion. There is seldom a motive behind them, our children are not trying to manipulate us into anything. They. Just. Can’t. Cope. Anymore. Their body and brain are screaming at them at the same time and they don’t know what to do. My daughter has left activities like choir or ballet in a complete state and has run to me screaming and hysterical, over a small issue. My son has fallen apart at friend’s homes. All I can do in those moments is hug them and rock them and quietly tell them “It is OK, you will be OK.” I am relieved when this happens in the company of friends who understand, who don’t judge me and who give me the space to help my kid. Like the time my daughter landed up under the table having a panic attack because a friend’s husband walked in the room. Fortunately, now that she is 8, she doesn’t do that anymore. That friend is an OT and has also really made a huge difference in my daughter coping with her sensory system using the ALERT programme, which means sensory meltdowns are infrequent with her now.

The most challenging part of being a parent with a child with sensory processing disorder is dealing with labels. Not the labels applied to our children, but the labels that other people stick on us. Neurotic, over-protective, pandering, over-sensitive, controlling are words that have been used with us and other parents that I have spoken to over the years. In fact, I once had a parent apologise as I held my screaming daughter in my arms that he had just thought I was just a bit over-protective when I told him that she was sensitive.

A parent of a young sensory child does everything to keep them on an even keel, because not doing so results in a miserable experience for everyone and the effects of a meltdown are felt for a number of days afterwards. Things that parents of neurotypical kids manage with ease become a minefield to the parent of a child with SPD. When my child has a tantrum, it is easy to shrug it off, help them over it and carry on with the day, but when my child has a sensory meltdown I feel like I have failed them. I have not looked after their sensory needs adequately or I have listened when a friend says “Don’t worry she will be fine” or I have chosen to let my need to buy one more thing at the shops override the voice telling me we need to get home. When my child has a sensory meltdown, the ripples carry on for days. Sleep is disturbed, nightmares are frequent, tears erupt for a few days afterwards and we suddenly become hermits again.

School Daze

Another mum, another conversation, this one revolves around a child with Sensory Processing Disorder not coping in school. This is not the first conversation I have had on this topic and thanks to walking through this with a number of children (both patients and clients), I have a few strategies to help. But perhaps that is jumping the gun, perhaps I need to take a step back…

Why is school challenging for kids with SPD?

Imagine you are in a very loud, brightly lit bar, the music is blaring and all the tables around you are full of people laughing a talking at the same time. In addition, you are wearing a new jumper that looks fabulous, but is made from incredibly scratchy mohair and your shoes pinch just next to your small toe. The person sitting opposite you is wearing really overpowering cologne and there are huge television screens on every wall with colourful music videos playing. Suddenly a your employer comes in and wants to have an in-depth conversation about the latest development at work. Your success in your job and your future career depends on this conversation. This carries on with little break for the rest of the evening and into the night. I think I can safely say you would be really tired at the end of it all, some people more than others granted, but this is essentially what school can be like for a child with SPD. The challenge with school though is that it is relentless. It happens 5 days a week and if you miss a day, you are behind or in trouble.

SPD presents in so many different ways. The above description would be what school is like for Boo, who is more sensory defensive than sensory seeking. She struggles to modulate and to filter all the stimulus around her. Other kids are sensory seeking. Most are a bit of a mixed bag and no two children are the same. However, sitting in a classroom of 30 odd children having to focus and attend while everything else is going on and not being able to self-modulate or remove yourself from the situation is challenging for almost every child with SPD.

A friend shared this video with me, I think it summarises SPD really well. So if you would like to learn a bit more about it, have a look at this: http://blog.theautismsite.com/spd-questions-answers/. It is well worth it.

What are the options?

I always say that trusting your instinct, as to what educational option suits your child and your family best, is generally the best strategy. I have seen children move from larger state schools to smaller independent schools and be much happier. I, personally, made the decision to home educate as Boo was just not ready to start formal education at 4 years (as happens in the UK) and she is doing really well. Others have managed to keep their kids in a state/government school while putting strategies in place to help with their child’s sensory needs. There is never a one-size-fits-all answer and an Occupational Therapist who is trained in Sensory Integration can really make a difference. Any advice that I give is not meant to replace professional advice and therapeutic input.

In my next post I will talk about some of the things you can do to help a child in school cope, but I have said enough for now. Do you have any specific questions about SPD? Do you have a child that has found school challenging? Post your questions in the comments section below.

Rorschach Painting

Jay is very sensory defensive and I struggle to get him to draw or paint much. He hates the feeling of paint or glue or anything (even water) on his hands and so can get really anxious working with art materials. He also has a strong idea as to how things should be and so gets frustrated with his scribbles, no matter how I handle the matter.

I recently bought some new paints from Ikea, that are in squeeze bottles. Good for strengthening little hands and a different art experience for Boo. I got them out this afternoon so she could experiment.

Then Jay wanted to have a go, he did a few blobs on paper and then I realised that these paints are beautifully thick and colourful, perfect for Rorschach paintings, which are so much fun and successful no matter what your skill level. So I folded the paper in half and Jethro dribbled on the first half of the page (did I mention this was great for strengthening hands).

Then we folded the paper together and went “smoosh”, which involves putting pressure through the hands onto the paper and pressing down (it might not seem it, but this is therapeutic too). Jay loved opening up the paper to reveal his art work and for once he was happy for me to pin it up on our art board.

We did a few of these, and only stopped when the table had no more drying space. I am so happy with these paints. A successful morning with my little man happily interacting with paint.

Sensory Strategies for Parties

After my last blog post, Sensory Meltdowns, a reader wrote, ” I have been wondering about birthday parties… I held one yesterday, and even through trying hard to minimise the risk of meltdowns by any one of the numerous sensory kids attending; was not entirely successful. Then, after everyone was home, and my kiddos in bed..this sensory mama, who was holding it all together so well, went and had a meltdown. So, my question is, maybe birthday parties are not such a good idea!?! Or maybe for us lot they should be shorter, or, with less people (but who to leave out of a tight-knit group?), or what?? (Already tried water to drink regularly, proper food, very low sugar (no actual sugar); outdoor non-competitive games) Tell me you have some tips for parties please?”

Birthday parties are a recipe for disaster for sensory kids. There is the excitement and build-up, lots of friends, who are also excited, making lots of noise, change in routine, possibly a lack of sleep from the night before, sugar, competitive games, the list goes on. Usually if you have sensory kids at a party someone has a meltdown. Here are some of the things that can be done to minimise meltdowns, if you know one or more sensory kids are either hosting or coming to the party:

Numbers: The most important thing is to keep numbers down, this can be tricky, but fewer friends means less stimulation. Work out how many friends your space can manage and then limit the numbers, most mothers will understand if you explain the situation to them. If you have too many friends for the space and too many friends that have to be invited, you could consider a few smaller low-key gatherings. They are actually a lot more manageable for everyone involved, but you might be baking all week!

Theme: If you have the funds for it, an activity based party can be a good idea for a sensory kid, particularly if it involves physical activity. It helps keep the kids focussed and interested. I would advise against sharing the space with other people though. It needs to be in a private space and the people running the party need to know that there should be no overly loud or energetic background music. Avoid spaces that are visually overstimulating or that have bright fluorescent lights.

Sugar: While it is fun to have sugary treats, it is wise to remember that some sensory kids go crazy on sugar, check with the mums as to whether there is sugar sensitivity or any other dietary considerations for the guests. I have been known to make vegan layers of cakes and to give sugar sensitive kids dark chocolate as a game prize rather than gummy sweets. The mums will thank you for it and the kids most likely won’t notice they are having healthy party food.

Straw Drinks: Providing straws with drinks is a great trick for sensory kids. A watered down juice is better than a 100% fruit juice. The calming effect of sucking on a straw and then being able to chew on a straw is worth it. Labelling the boxes in advance is a good idea, as they will be put down and then returned to throughout the party.

Crunchy Food: A lot of sensory kids find salty or sweet, crunchy food quite calming. So popcorn, crisps, carrot sticks, apples and crackers are good calming foods to provide.

Party cups with humous, carrot and cucumber sticks.

Environment: Try and provide a calm space for any over-stimulated child to retreat to. It could be a separate room with a calming activity to do and perhaps even classical music playing. A great idea is to have a darkened den or tent with soft toys inside that can be safe hideaway. Let any sensory kids know in advance where they can go if they need it.

Games: These provide the biggest challenge, particularly if you have emotionally sensitive kids. I avoid pass the parcel at all costs. It is just too much for so many kids and I have witnessed a lot of tears in my time. I don’t think parties are good times for tears or to learn life lessons! We always try to have games outdoors. There is less ambient noise and it enables everyone to move and get vestibular and proprioceptive input. We also avoid games that involve physical contact, it is a recipe for disaster if you put a sensory avoiding kid next to a sensory seeking kid. Treasure hunts and quests are great party games, also games that involve freezing and running (what’s the time Mr Wolf). Games that have winners that get prizes, while others don’t aren’t helpful for children who are sensitive. So if you play a tried and tested favourite, make sure everyone finishes with a prize.

Figuring out the puzzle in our medieval quest.

Activities: We also try and include a simple craft that kids can do and then take home as part of the party pack. It works best to keep this for the end of the party when kids are tired and need some focussed attention to keep them out of mischief.

Decorating “medieval” goblets with jewels and glitter glue.

Timing: A good time for a party is straight after lunch. That way kids arrived well fed and you can start your party with outdoor games (make sure you have water or a box juice available). After about 45 minutes to an hour you can bring out the party food and utilise the calming effect of eating and chewing. You can bring out the crafts as the last activity before home time. It can also work to reverse the order, but it really helps to have food in the middle of the party.

Bad weather plans: If the weather is just too awful to venture outdoors (a common occurrence in the UK), then it can be helpful to divide the party into smaller groups and to rope in other mamas to help run the games in different rooms in the house. Everyone can then come together for food and a quiet group game at the end.

Time Limit: Keep the party short, state on the invite the party’s start and finish time and ask your closest friends if they can help get everyone out the house on time. Even though they are probably the ones you would rather keep with you, if no one moves at closing time, it could be a long afternoon.

Presents: I honestly think it is best to keep present opening to after the party is over and the majority of friends have left. Let one friend stay and help with unwrapping the presents. Children crowding around a child opening presents, can make sensory defensive kids feel crowded in and could lead to outbursts and lashing out.

Sensory Mama’s: Don’t try and run a young kids birthday party on your own if you are a sensory mum yourself, you could be overwhelmed by having to co-ordinate kids and deal with sensory bombardment of your own. Get help! Ask your husband to stay home, rope in grannies and friends if need be, most adults would be more than happy to assist, they just need guidance as to what what they should do.

I think the most important thing to remember is that you have every right to put the plans that you need in place to have the birthday party that works for your child and your family. My daughter’s second birthday party was held with only 3 additional people. We asked her who she wanted there and she didn’t choose any family members, so we didn’t invite any.  Jay has yet to have a single party, on his birthday he has cake and presents, he just doesn’t do well with groups. I think that next year it will be the same.

Do you have any other suggestions for birthday parties that I haven’t thought of?

Sensory Meltdowns

After yet another conversation with a mamma friend, I have to write about what it is like to parent a child with sensory processing disorder. I am not sure how many people realise that things that most people enjoy or do with ease can present a real challenge to a child with sensory processing disorder (and to their parents!). Situations that are hard for sensory kids include birthday parties, shopping malls, supermarkets, coffee shops… are you seeing the trend? Places with a lot of people. Places with people, fluorescent lighting, background music and a lot of different visual stimuli (think shopping mall at Christmas) are incredibly challenging. Most parents of sensory kids have developed strategies to cope: shop online, go out early, take ear phones/hats/sunglasses/chewing gum, always have a stop at a quiet coffee shop to eat something and regulate a bit. People without sensory kiddos don’t get why you can only go to 3 shops and then have to go home or your have to leave at dawn to get to the shops before the crowds or carry a pantechnicon of snacks, drinks, toys etc. Parents get labelled as controlling, neurotic, over-protective, over-indulgent by other people who have no idea what happens without these strategies.

Sometimes though, things don’t go according to plan, shopping takes longer than usual or there are just too many people at the party, it can be any number of things. That’s when it can all go horribly wrong. What often first happens is the child gets niggly, they refuse to eat or drink anything (and so get hypoglycaemic on top of already not coping). Most parents will then try and intervene. Leave the party early, carry the child, get out and go home and once again the labels come out, the sideways glances and the judgement. What people don’t see most of the time, is the meltdown.

Most meltdowns happen at home, after the crazy busy shopping mall or hectic birthday party, but occasionally they happen away from home, when there are any number of friends and strangers around to pass judgement and, in one friend’s case, even call the police. Meltdowns are a sensory kid’s nervous system going haywire. They get into a full on flight and fight mode, because everything inside of them is hurting and they literally don’t know what to do with themselves. This is NOT a tantrum. The child is not in control, in fact the are in hell at that time. Every child is different, but a sensory child in meltdown can scream, hit, bite, kick, lash out, fall on the floor, whatever they do it isn’t pretty, it isn’t quiet and it draws attention. The parents then have to not only deal with calming their children down, they have to deal with onlookers who are coming up with their own reasons as to why the child is not behaving the way they should.

Things that parents or caregivers can do to help in the situation are: remove the child from the situation, darken the lights, reduce the noise, give them a heavy blanket or soft toy, hold them (and give deep pressure at the same time), I still use shushing (white noise) to help Boo calm down. Most parents have figured out what works best for their little ones.

What onlookers/friends can do to help: speak quietly and calmly and only engage the parents if necessary, dim the lights (check first), turn down the volume of the sound track that is playing, make space and preferably move the attention away from the child. When the child has sufficiently calmed down, offer a cold drink, or a crunchy snack, a warm blanket or just ask the parents if you can get them anything to help them.

The number one thing that anyone can do to help the situation is to not judge a child having a meltdown or the parent managing it and don’t label a parent as neurotic, over-protective or downright weird and please, please don’t pass a “helpful” comment. It isn’t helpful, trust me.

Microbial Sculptures

Part of our learning approach is to use a lot of hands-on learning, which works well with dyslexics. It helps Boo to remember what she has learned and to interact with the subject on a 3D level. We brought this in with microbes. We first looked at yeast, bacteria and viruses on google images. This enabled us to talk about the difference in their structure and size. Boo then chose one of each to model (and ended up making 2 bacteria).

I put out a selection of materials for her to work with, as I wanted her to really engage with the subject and use her creativity:

She wasn’t too impressed with having play doh to work with as she wanted something that would last. So the next time we do something like this I will use more permanent modelling materials.

Boo really put a lot of effort into these sculptures and enjoyed mixing art and science.

I love what she came up with and we now have the most unusual art display on our shelf.

Fake Snow Hack

Last year I bought instant snow online. I cost quite a lot and was incredibly disappointing, it produced a tiny amount of slush. As winter starts to descend upon us, it seemed appropriate to try a wintery arctic sensory tub once again. This time I remembered that somewhere at some point I saw that you can use nappies/diapers (sadly I have no idea where I saw it). As we had a few nappies that my son no longer uses, we had a go:

First we cut up 4 nappies, you need to find the polymer layer. In the pampers brand we used the polymer was stuck to the plastic, which made it almost impossible to get the polymer off. I found it helped to wet the nappies with water and then we could easily flake off the instant snow. Boo was happy to help with this, Jay found it a bit tough on a sensory level.

    

After only 4 nappies, we had a decent amount of fake snow to play with and we got the arctic animals out. It didn’t take long before the toy dinosaurs were added to the sensory bin, but that is how it goes with Jay at the moment.

    

Once her brother had a go, Boo had her turn which was a lot more theme based. She enjoyed using the arctic animals and our collection of semi-precious stones in the bin.

The cost of making the snow worked out at less than £1 and it produced so much more than the pathetically small vial of instant snow that I bought on Amazon, we will definitely try this again.

Entrepreneurial Adventures

Richard Branson is a well-known entrepreneur who also happens to have dyslexia, or perhaps he is a successful entrepreneur partly because he has dyslexia. In fact there are many successful entrepreneurs with dyslexia: Henry Ford, Walt Disney, Ingvar Kamprad (Ikea’s founder), Steve Jobs, Tommy Hilfiger are just a few of the more famous ones.

Boo has always shown an entrepreneurial streak and so when the opportunity came up to share a table at a Christmas Fair she grabbed it with both hands. I thought it would be a fantastic learning experience and happily agreed. Boo decided to make chocolate covered marshmallow pops, which she first discovered at Starbucks. She thought that other children would really want to buy some.

I was so proud of just how hard she worked and how she threw herself into the project, which also gave me the opportunity to do writing practice (something she avoids at all costs), maths skills, business skills, food science, food hygiene and marketing.

After our making our first prototypes (which were an unmitigated disaster) we realised that we would need to learn how to temper chocolate, http://www.theguardian.com/lifeandstyle/2011/apr/15/how-why-temper-chocolate. Boo wasn’t interested in “cheating” and using Candy Melts. After purchasing a chocolate thermometer and more chocolate our second attempt was much better. We were good to go:

      

Production started in ernest a few days before the fair and we ended up with 3 different types, white chocolate snowmen, milk chocolate with sprinkles and dark chocolate with white chocolate stars.

The snowmen needed a bit more technical skill and so I had to help with the chocolate piping and decorating.

The pops were packaged in cellophane bags with ribbons and presented in a seagrass basket. We were too busy to take any photographs of our stall, but Boo worked incredibly hard and was a natural salesperson.

At the end of the day we deducted our kitty and took 50% of the turnover to cover production costs and Boo ended up with a tidy profit of £20, which she was immensely happy with. We have agreed that we can’t do many of these fairs as the work is time consuming, but the opportunity to learn about real life and business made the whole experience worthwhile. Boo’s summary of the experience, “Starting a business is hard work.” Would she do it again? “Absolutely!”

Have you started any business ventures with your home educated children? If you would like more information on how to make chocolate covered cake pops, let me know in the comments section.

Miraculous Microbes

Once we had it confirmed that Boo was dyslexic and I was faced with the fact that I would have to accommodate her specific learning requirements. I went on the internet and found a talk by Dr Doresa Jennings on Teaching to Dyslexic Advantage in a STEM/STEAM Homeschool, on http://dyslexicadvantage.com/page/free-stuff (You are required to register to have access to the site). In a nutshell it means that you focus on Science, Technology, Engineering, Art and Maths and don’t keep your learning in silos but rather work make connections in all the areas that you are studying. I decided to try it.

A few weeks ago we read the story of Pasteur, which I remember finding fascinating as a child. Boo struggles with remember facts and figures, but if you give her a story she remembers the details, narrative reasoning being a strength of dyslexia.

“The Fight Against Microbes, Pasteur’s Story” by C Birmingham and B Birch. 

It fascinated her. So we did a science experiment to see what yeast needs to grow. We had 6 containers with yeast, 2 had cold water, 2 had warm water and 2 had hot water. Half of each of them had sugar. We then hypothesised which container would show the most activity. From this she learnt that yeast needed warmth and sugar (food) to grow.

I then allowed some homemade bread to go mouldy and Boo looked at the mould with her handheld microscope and drew what she saw. We discussed how the mould appeared and she figured out that there must be “seeds” in the air that can’t be seen. That bread was seriously mouldy, I was really happy to finally bin it!

This lead to another experiment, this time taking a slice of bread and having one control, one in the fridge, one dipped in salt and one that we dried out in the oven.

We labelled them and after 5 days we saw mould on the control, after 18 days there was mould on the bread in the fridge, we are still waiting for the other 2 to get mouldy. This showed Boo how mould needs moisture and warmth to grow on food. Which lead to a discussion on how we keep food from “going off”.

Our adventure into microbes has also enabled us to learn about hand washing and its importance. To look at history and how people preserved food before fridges and freezers. We have also recently embarked on a small entrepreneurial venture which involves food hygiene and Boo has really understood why it is so important. More about that another time.

Boo has even painted a “germ swimming in snot” and has also asked for a microscope for Christmas.

I still plan to get out the modelling clay and pipe cleaners so that we can make yeast, bacteria and viruses and I haven’t yet gone into learning about mould and what those tiny “seeds” are, but I thought it would be good to wait until that microscope arrives in a few weeks time.

Where to from here?

I haven’t written on this blog for ages. Life has been seriously interesting and a bit full on and I also haven’t really been able to “feel” where this blog should go. Then a few weeks ago Boo was assessed and found to be dyslexic. This is on top of having sensory processing disorder. We were told that she was not severe enough to get additional funding or support at school and so our choice to home educate proved to be the right one. This means that I am on a very steep learning curve, learning what it means to home educate children that fit outside the box. Interestingly enough though almost all the home educated kids I have met are “outside the box” in some way.

So I have decided to shift the focus of this blog onto home educating, specifically looking at kids with sensory processing disorder or dyslexia or perhaps both. I was once upon a time a paediatric neurophysio and so, hopefully, some of the skills I used years ago, will come in handy now. As I find out what works for us (and maybe what doesn’t) I will pass it on. Thanks for stopping by.