Social media can either be my best friend or my worst enemy.

Looking through old memories can bring back so many lovely times and show just how far Ethan has come, or it can show skills that Ethan used to have and now doesn’t.

Life is so rocky here, you never know what you’re going to get dealt next. We live life a day at a time and treasure every moment, but it’s heart breaking to see Ethan loose so many skills that we spent hours encouraging him to gain. Every little milestone is celebrated and it’s always so exciting to see Ethan exploring his body and using it in new ways. I’m always mindful that the new skills won’t stay with us long. Some skills do, but a lot over time fade away.

Over the last 6 months I have found social media both a challenge and an encouraging place.

It has given me support through such a hard time, knowing people who are in the same boat as us providing that level of understanding that you both just have and  know how hard things are.

I’ve also struggled with seeing the development of all our gorgeous friends’ children. Having time to blossom and learn new skills is so encouraging to see, but it also brings back painful memories of the skills Ethan learnt but now doesn’t have any more. This is something we face on a daily basis. There’s no explanation of what causes these regressions in skills, but I’m pretty sure it’s due to his memory which has been affected due to his seizures.

I’ve always kept a positive spin on everything I post about Ethan, because that’s how we are with him. However it’s hard to always remain positive about everything when your child faces so many barriers and battles to achieve all the small things.

We will always rejoice in everyone’s achievements around us because we know, that just like us, they are also worrying about these skills disappearing and not lasting. We all stick together and this is the lovely side of social media. All in this together supporting each other no matter what.

Just like our lives, social media is the same, but for the most part it’s good and that’s the way we like it!

What’s spasticity? Spasticity is an abnormal prolonged tightness of the muscle which is often as the result of some type of neurological condition.  As a result, movement can be difficult.  In order to move, opposing muscles on the opposite sides of a joint contract and relax, much like a pulley system.  When that pulley arm is shortened, it’s more difficult to generate force and movement can be difficult.

So, what to do?  Spasticity is chronic, and can impact play, function and self-care. This will look different at every age, and for every child. So, understanding some simple facts about spasticity is the most basic step, because knowledge is power.  Consequently, a rich conversation with your child’s specialists will lead to the best intervention.  Here are some facts about spasticity that are important for you to know:

There are many strategies and treatment methods to treat spasticity.

Simple things such as gentle and frequent range of motion, and positioning are encouraged.  Splints provide a prolonged stretch and can maintain or increase range of motion.  Depending on the age and condition of the child, knee immobilizers, night splints, serial casting and standing frames may also be appropriate methods of intervention that provide multiple physiological benefits. Please speak with a therapist or physician to discuss your options.

Spasticity can impact joint integrity.

When spasticity occurs over any joint for a prolonged period of time, the constant line of pull in one direction from spasticity may cause joint instability. If you hear any clicking, notice a leg length or arm length discrepancy, or if your child’s affect or mood changes, if they wince with active movement during bathing, dressing, or weight bearing, check with your pediatrician just to be safe.

Range of motion is important because for optimal positioning and balance a child should be able to achieve flat feet in sitting and standing.

Imagine sitting on the edge of skyscraper, with nothing under foot.  How stable would you feel?  Sitting in a child size chair, a highchair, on a stool, or on a bench…. Support underfoot helps support balance higher up on the chain. If your child’s feet don’t have support, get creative and create a platform for their feet.

It may not look pretty, but it’s still active movement.

We, as parents and as therapists, must celebrate any effort put forth by a child because that means they’re thinking, they’re trying, and active movement shows effort; every effort should be recognized as a success. With that being said, visual, verbal and tactile feedback on their movement may enhance performance.  Refining their movement is specific to each child’s abilities, so set realistic goals, start easy and increase the challenge to meet their abilities, aim for the sky, but always celebrate the small victories of participation.

Spasticity looks different at different stages of development

When a child presents with spasticity, it may take extra effort to move.  So, first and foremost, please consider the energy consumption that a child must exert to accomplish activities of daily living, self-care, and mobility changes.  Adapt the environment to make the child as independent as possible.  There are great new adaptive pieces of adaptive equipment out there to buy or borrow.  It’s just another way to support your child’s development.

I’ve been working with children for many years and spasticity always changes (based on the day, time, mood of the child, and whether the child is well, tired or sick).  More importantly, there are many ways to manage spasticity and remember that it will be a marathon, not a sprint.  Go slow and steady!

Burnout:

noun

the reduction of a fuel or substance to nothing through use or combustion.

I am not sure I have ever reached burnout, but I have felt myself being carried towards it. It’s not hard to see how this can happen to a parent carer, doing what we do is very demanding on fuel. I have realised that the only way I can avoid it is to take action and do stuff to prevent it, ironically ‘doing stuff’ is one of the last things you feel like doing when you are heading in this direction. The trick for me is to get far enough ahead of it, upstream, before you get caught in the current.

One of the quite handy habits of people who live with anxiety is the ability to rapidly leap further into the future when challenging situations strike. For example, the cat pukes. Non-anxious mind: ‘the cat puked, I should clean it up’. Anxious mind: ‘the cat puked, what if she has an incurable disease, what if she dies, how will I tell my child, what if my child is psychologically damaged by this…’and so on. Although a largely annoying way of thinking (to put it mildly, anxiety is often debilitating) this comes in handy in some scenarios, one of which, for me, has been in anticipating burnout.

Earlier this year our daughter’s condition became much worse. She was suffering hundreds of drop seizures a day that lasted only a few seconds but violently flung her to the ground. They became so bad that we had to hold her up on a harness from the moment she woke to the moment she fell asleep. She would get out of bed in the night, have a seizure and crash to the floor in seconds. Her makeshift bike helmet (before I found out on a Facebook group I could get one through orthotics) made multiple dents in our fridge from her falls. She could no longer feed herself, lost the ability to talk, to use the toilet and to engage in any play.

We were, and are, devastated.

Somehow in the midst of this I was able to poke my head up, meerkat style, and see the prospect of burnout on the horizon. I went into ‘fix it’ mode. I knew my daughter’s condition was largely out of my control, we were following the consultant’s drug advice, but I also knew there were some things I could put in place to make this liveable with (practically that is, emotionally it takes longer).

I was able to call our community care worker and get emergency care support in place, get a helmet from orthotics, persuade the OT service that Covid was not a reason not to get us equipment to keep our daughter safe, and get her a safe bed and a chair with a head support so she would be less likely to choke when eating. They even ordered her a special harness from America for us to hold her up with. I spoke to wheelchair services and got her a buggy as walking outside became hazardous.

The care and equipment we have in place now is what has stopped burnout for us.

I know it would not be there had I not started organising it as soon as I could see where we were headed. I do think someone would have put it in place eventually but only after burnout had happened. Unfortunately that seems to the be the way services work, by then the journey back to being well can be painfully long.

I do appreciate that for lots of us, the ‘getting in there early’ approach is not possible for a whole stack of reasons. It’s just what helped me this time. I would like to think I could do this next time and, if I couldn’t, that I could manage to grab someone from our support network, download and ask them to do it for me. The organising itself takes lots of fuel and so I do find myself very depleted as school finally starts again.

I can also see that, all being well, I should have some days ahead when I can begin to revive myself again. I have walks, bike rides and a spot of shopping and lunch planned. Oh, and naps, plenty of naps.

Every mum I know has at some point experienced Mum guilt. Whether you’re the type that is plagued with it daily or whether it creeps in fleetingly from time to time. We have all experienced it, and can probably all agree that it absolutely sucks and is an unwelcome visitor in our already busy Mum minds. Get Frank Skinner on the phone and stick that in room 101. (Is that even still on?!).

It seems almost as though this mum guilt somehow just suddenly appears during pregnancy, though I couldn’t tell you when and I certainly don’t remember reading about that on my bounty app!

Since having Joseph I have met quite a few other SEN Mums and I think it’s fair to say that we naturally feel the mum guilt somewhat more than most. Our kids come with a whole bucket load of extra things to do and worry about, and unless you’re fortunate enough to have your own PA to take on some of the load for you (a girl can dream) then chances are, as one single human being, you cannot do it all at once, flat out 24-7. This in turn leads to those berating thoughts and “should haves” or “shouldn’t haves” that all too often leave us feeling like we’re failing.

Well I’m here to tell you mama, that you’re not failing, in fact you’re doing great! Chances are if you’re frantically worrying if you’re doing a good enough job, you are already an amazing Mum.

Yes, I’m talking to you. The mama that cried in the bathroom away from everyone when it all felt a bit much, so you didn’t freak anybody out. I see you, you’re doing amazing and you are enough.

I’m talking to you. The mama that felt guilty for wishing her kids could go back to school already. You don’t love them any less. I see you, you’re doing amazing and you are enough.

I’m talking to you. The mama that puts on a brave face for other people every day even though you’re facing you’re own internal battles. I see you, you’re doing amazing and you are enough.

I’m talking to every single one of you Queens out there that put everything and everyone before yourself day in, day out. Those of you that feel guilty if you spend your free time sitting in front of loose women, gorging on chocolate digestives instead of doing the hoovering up.

I see you. I am you. We are all enough.

As humans, we feed off the energy around us. Speaking from my own experience, I have a tendency to absorb whatever Joseph’s mood is. I know this is the case for many of my friends, especially those that have children with complex needs. I think this is natural as a parent. You share in their joy and their misery in equal measure. It is difficult to remain calm and positive when your child is clearly unhappy – particularly when there are no obvious solutions for helping them.

Recently we had a bad day following a night with no carer. My partner works away during the week and though we do have respite to help a few nights, some days the exhaustion still manages to sneak up on me and it feels like no amount of sleep would ever cure me. It is that bone deep, soul aching exhaustion that gnaws at your edges and penetrates every pore.

This particular day I had not slept very well the previous night and the sleep I had managed was broken by needing to suction, turn, tend to an incessantly beeping feeding pump, change feeds over, administer meds, administer nebs and oxygen, change nappies, pyjamas and bedding, stroke, soothe and settle. Following this we were both awake and up early. All of the tea in China couldn’t breathe the life back into me.

Joseph was noticeably out of sorts. I dutifully carried out all of the obvious checks; sats, heart rate, respiration rate, temperature, venting his feeding tube and so on. Nothing was jumping out as the clear cause of his unhappiness. I put it down to possibly teething and reflux. A large proportion of the time with complex needs it is guess work. Acting as a medical detective to go through a list and eliminating the many possibilities until we reach the culprit. Unfortunately, though not all mysteries are solvable, and we have to accept that we might not find out exactly what the problem is.

It is especially difficult with nonverbal children that are unable to tell us how they are feeling. We have to rely on their subtle tells in their body language and facial expressions.

This was one of those days. Joseph was clingy. Which is out of character. When he is on form he is a fiercely independent boy and usually only seeks out so much affection if he is feeling under the weather. His evident upset was rubbing off on me because I couldn’t fix it for him.

Aside from Joseph’s rigid bath and bedtime routine, we don’t have specific timetable of events during the day in our house. I am fairly relaxed in that sense but I do always like to make sure that he is doing plenty of physio worked in alongside his play, visual stimulation activities and other adult led engaging play throughout the course of the day.

Joseph was having none of this and was only happy either cuddling me or watching the television. Well, as someone who worked in childcare for years, I always feel like I should be doing something educational even if it’s simple learning as we play. Whenever we have days like this that revolve around the television I feel that familiar guilt tapping me on the shoulder. The flood gates opened and in came the nagging “we should be doing something fun and engaging”, “I shouldn’t have let him have this much television”, “He should have spent more time in his chair” etc etc and so on until I had to just sit back and stop.

I had to try and remind myself that it is ok to have a day off. There is so much expected of Joseph and of myself on a daily basis. Sometimes it’s ok for him to have a lazy day with mummy where we worry a bit less about all the extra therapies, where I worry a bit less about the demands of housework and my enormous and endless pile of paperwork. It is ok if I take a day off from phone calls to various medical professionals, charities and services. They will all still be there tomorrow. It is ok if we don’t get dressed until noon. It is ok to have time to breathe, to process and just be.

I have to remind myself of something often and I’d like to share the same sentiment with all of you.

A bad day does not mean a bad life.

Read that line again and just let it sink in for a second. A bad day, or 10 bad days even, does not equate to a bad life. When you do have one of these days, try to remember everything that you do with and for your kids on a daily basis and give yourself a break. This difficult day will pass and there will be good days that follow. Congratulate yourself on what a fantastic job you are doing.

A day of hanging out together in front of the television is not a day wasted, but a day well spent recharging our batteries so that we can be on top form for the next curveball life throws our way.

As a family not being able to visit our favourite places has been hard. For Team Sam, our favourite days out tend to involve woodlands, gardens or other outdoor spaces. Social distancing isn’t often a problem as we prefer the quiet to the chaotic (we have enough of that at home already thank you so very much).

Almost 5 months of pretty much complete isolation, being told how very vulnerable Sam is and how dangerous this virus will be for him, The Outside World is a rather frightening place.

I was surprised at just how bad my anxiety had actually become, and seeing people ignoring social distancing did nothing to help things. Officially shielding in England was paused on 1^st August; however, many shielders and their families were starting to gradually reacclimatise themselves to modern life before that point.

Our kids mental, as well as physical, health matters. For Sam, shielding has been tough. He’s missed his friends, teachers, grandparents and other family members. He’s missed going out to his favourite places. He loves being outside, going for walks etc., so after very careful thought we decided that the time had come to venture back out. One of our favourite local attractions had recently reopened and were restricting access to the gardens/lake area to those who were members, you had to book a specific time slot to go in and were asked not to stay longer than around 2 hours to ensure numbers were low and social distancing was observed.

So, on a sunny afternoon and after pre-booking out time slot, we ventured back out into society as a family for the first time in weeks. The sense of freedom at being back there was wonderful, a first taste of normality.

Sam proudly wore his face mask, even though they’re not really needed outside (he’s rather fond of his masks), and the seizures that have blighted his days and nights for months were blessedly absent for a few precious hours as he enjoyed being back in one of his happy places. Most importantly though, people were considerate and followed the new rules. It made for a very happy afternoon out.

Sadly, one look at the news confirms that too many aren’t following the guidance; several countries are experiencing a second wave of covid-19, and local lockdowns are expected or in force in the UK. For shielder’s and their loved ones it’s a very scary time; we’re just venturing back out again and need everyone to follow the rules to keep us all safe. We’re used to keeping our children as safe as possible but having to put our trust in others is proving much more difficult.

It had been coming for six long months, since school closed due to the Coronavirus lockdown back in March. Back then, James was on a gradual build-up of his time in school, slowly getting back to where he had been before epilepsy, and the associated anxiety that came with it entered his world.

You see, James has been out of school for a long time before; he missed the entire 2017-18 school year, being house-bound most of that time, and only started returning to school in Autumn 2018, starting with just one hour a week and slowly building up. As well as epilepsy and anxiety, James is Autistic and has learning difficulties, which made it particularly hard for him to cope when adolescent onset epilepsy arrived. He shut down, refused to leave the safe space of our home, built walls.

Over the 18-months since James was able to start conquering his anxiety and leaving the house, that one hour a week at school had grown to three days (for about 4½ hours a day). The week that lockdown started, we had planned to add another day to four days a week, but the virus put an end to that.

So, six months on, lockdown easing, school reopening, it was time to go back. Nervous days led up to the big day, a sleepless night the night before, and that was just me! As we prepared everything James needed, school clothes, shoes, bag, lunchbox, communications tools, home/schoolbook, photos and symbols of school, the tension rose, the anxiety built.

How would James respond? Would he be willing to go back into school, or would the old fears and uncertainties return, forcing him to be unable to return?

There has always been a routine to James going to school, as there is for many children and young people with additional needs. James enjoys time in his ‘den’ a small room just off the hall where all his favourite things are. From there he can see the bench in the hall and watch while his shoes, his school bag, his lunchbox etc. are gathered. As we placed these visual clues on the bench I glanced to see if he was watching. He was. Would he be filled with anxiety and refuse to move?

I gathered up the photo’s we have of school so that he could see where we were going. Trying to suppress my nerves I cast a sideways peek in James’ direction. Did he look worried? Was he fearful? Silent prayers were uttered, and I was encouraged to know that lots of people we know (and some we don’t) were praying and sending positive thoughts at the same time.

I needn’t have worried, as James saw all of these visual clues appearing, including a pot of PlayDoh (other brands are available, but they don’t have the right ‘smell’) that he likes to squeeze on the way to school, he was edging along the seat of his sofa towards the door of his den, and as I asked him to come he got straight up and came smiling through to the hall. Within moments we were ready, in the car, and on our way. But while James was smiling, vocalising from the back seat that he was “Appy!”, I was still suppressing my own anxiety.

What about when we get to school. What about the staff greeting him in full PPE? What about the temperature check? What about the simple fact that he is now in a different class with a different teacher and different pupils, something that had affected him before? Would this all knock him sideways and send him spiraling down into overwhelming anxiety again?

As we pulled up outside of school a member of staff that James had never seen before came out to greet and collect him, wearing full PPE. My heart sank. Surely this would be too much for James. My heart was racing, my mind filled with concern.

James, on the other hand, seemed to take these unusual factors in his stride, got out of the car and with his rucksack on his back and his Playdoh firmly being squeezed in his hand, headed off into school with his new Teaching Assistant. I tagged along behind for a few moments, was obviously not needed, so headed back to the car, thrilled but slightly stunned.

So, I thought to myself, who was the one with the anxiety issues?

If James had been anxious, he certainly wasn’t showing it. It was me that had been the anxious one, me that had lost sleep, felt that knot in my stomach for days, had my mind racing through all of the unlikely scenarios of what would happen if James refused to go to school.

As parents we worry, it’s our job, and as parents of children and young people with additional needs we can sometimes worry even more, there can sometimes be more to worry about. But if we let that worry overwhelm us, it makes it so much harder for us, and sometimes for our child. If James had picked up on my anxiety, it would have made him more anxious. If he had felt my panic levels rising then his own might have risen and he might have once again employed his old coping mechanism of staying put.

Sometimes we can’t help but to worry, but when we feel that worry overwhelming us we can do something about it.

We can talk to others and share our worries with them; that old adage that “a problem shared is a problem halved” can be all too true. Sometimes just talking through our worries with someone who is willing to listen, and maybe to add a light dusting of wisdom, can make all the difference.

I shared my worries with some friends; some, like me, have a faith and we prayed. It helped. I could still feel the tension inside, but I was able to hide it from James, to prevent it from affecting him, to protect him from catching my anxiety and becoming anxious himself.

In an hour or so I’ll be heading back to school to collect James. To find out what kind of day he’s had. Hopefully it’s been a positive first day back and so tomorrow, which as that wise sage Scarlett O’Hara from ‘Gone with The Wind’ correctly stated “…is another day”, will perhaps be a little easier, a little less stressful, and little less anxious. We’ll take each day as it comes, but I’ll also learn to manage my anxiety better, to keep sharing how I’m feeling with others, and to be delighted by the amazing progress that James keeps making.

Maybe some of this resonates with you, if so I hope our story has been helpful. Like your story, our story continues day-by-day, and so I hope, and pray that you have a really great day tomorrow.

Annabelle started mainstream nursery at 8 months of age, before we knew she had cerebral palsy.

As Annabelle’s disability became more apparent and she left the ‘baby’ room to move on to the ‘toddlers’ room it became more apparent that she would need extra support and equipment whilst in the nursery setting. She loved the ‘baby’ room as was able to sit with the staff, read books and cuddle for a large proportion of her days there but she needed to start playing and interacting with the other children to aid her cognitive and social development.

Annabelle takes a while to settle with new people so every room move led to us being anxious as to whether she would resettle and us questioning whether mainstream nursery was still right for her.

We have been very lucky and Annabelle has taken to most of the nursery staff. The sheer love most of the nursery staff provide Annabelle is indescribable. There has only been one member of staff who happened to also be her keyworker at the time that she was not able to create a bond with and that was primarily the time where we were really considering whether it was time to move her to a special needs nursery.

We persevered and are so glad we did because quite soon after she was allocated a new keyworker, one with more experience who improved nursery life massively within a few days.

Every change of room and keyworker from then on was always positive.

Annabelle move to the final room ‘pre-school’ slightly sooner than she was meant to as the previous room was very small meaning it was a struggle for Annabelle to access everything with her equipment.

We wanted her to have her walker with her and wanted her to have a standing frame there but there just wasn’t the room so collectively it was agreed she would make the move to ‘pre-school’ where she would be back with a previous keyworker so there would at least be some element of familiarity despite the change of room and the last increase of other children who would be around her.

We knew this was 100% the right thing to do for her as she needed to develop some independence within nursery. Soon after joining the room she created a new bond with a different member of staff and since then we haven’t looked back! She quickly became Annabelle’s keyworker and I cannot praise her enough. She cannot do enough to help Annabelle and the bond is magical.

Due to COVID we pulled Annabelle out of nursery for 15 weeks. We were nervous when the time came to send her back. After 15 weeks of only seeing her dad, her sister and myself would she still enjoy nursery?

Would she settle back in?

We didn’t need to worry; she was so happy to be back and overjoyed to be back with her keyworker. The break from nursery was only positive. She went back a different girl. She is more confident, her speech had improved, she is happy being left to do her own thing and looks forward going in to see her friends, whereas before she was just interested in seeing the nursery staff.

Seeing how the staff in ‘pre-school’ are with Annabelle and making sure she is included in everything, has made us realise that mainstream is a great place for her and we hope that we are lucky enough to find a school for her next year that has teachers that can provide the same care and compassion as we were lucky enough to find at her nursery!

 

As I order a new school bag online for my son I glance up as he flaps and laughs at the same 10 seconds of video he’s had on repeat all day. He has no idea about going back to school like he has no idea about so many things in life.

He had no idea why school suddenly stopped, no idea why his routine suddenly changed and no idea why he could no longer splash in the local swimming pool or crawl around in soft play at the weekends like he’s done for the last 11 years.

Like so many millions throughout the world with significant learning disabilities he has been totally oblivious to the pandemic that has swept the world and changed all our lives.

Right now people like my son might cause concern for so many. He can’t understand or observe social distancing, he can’t wear a face mask, those looking after him, including teachers and respite staff, have to have prolonged close contact in order to keep him safe and even washing hands isn’t something he understands or can do without great stress to himself and others. He can’t read so signage is useless, he can’t shop alone and he can’t say if he ever has any symptoms.

He’s not up to date with the news neither is he worried for the future.

He lives in the here and now, has no concept of money, and happily flaps at the same thing he watched weeks before and still has on repeat.

As I look at his smile and hear his laugh, I am so grateful for people like him: All those with such a simple level of living have so much to teach us and even more so now as we navigate through this year.

Those wonderful and very special people who remain obvious to the pandemic show us that each day has something to offer, even if it’s the most simplest of things like smiling gratefully at being given a snack or laughing as the first raindrops of the day lands on your nose and tickles you.

They teach us patience and understanding and tolerance of others. When the world says to stand back from everyone and avoid physical contact there’s something incredibly touching when someone like my son takes your hand because he knows no different or picks up keys a stranger drops and hands them to them without fear of catching anything because he has no understanding there’s anything he could catch. Or when he came to a shop with me and at the checkout went up a little too close to the server because he was signing ‘thank you’ because he can’t verbally say it. Yes he broke rules but he doesn’t know or understand and there’s no malice or agenda for those with his level of comprehension.

Looking after my son and keeping him safe this year hasn’t been easy.

Yet his innocence, his ability to love every single day and find fun in the simplistic of things, his lack of fear and total trust that his needs will be met, his natural enthusiasm and spark, his blissful obliviousness to the entire worldwide pandemic is so refreshing and healing.

So, to all those oblivious to world events this year, to all those with significant learning disabilities, complex needs and those unable to comprehend for any number of reasons: thank you. You continue to show me that the future is brighter than we think, tomorrow will give us reason to laugh and even if it feels like the same ten seconds are on repeat over and over we can still flap and laugh and find joy regardless.

The rain isn’t so bad when that first drop lands right on the end of your nose and it tickles. And even if it pours down just zip up your coat and have fun anyway.

There’s a lot to be said for all those obvious to the events of 2020 and the world is so much better having those children and adults like my son in it.

I’ve been a stay at home mom since my daughter was born almost 14 years ago. I had to quit the job I had at the time because she was medically fragile, came home from the NICU with a mountain of medical equipment, and no daycare would take her.

It was not a decision I took lightly; I did it out of necessity, and we took a devastating financial hit that took years to bounce back from.

As my kids got older and life calmed down a little, I started freelance writing as a part-time gig, and even though I hope to grow that business, I have since realized that I have a full-time career. It is one that I neither wanted nor asked for, but I have over a decade of experience, and I’m damn good at it. I realized that being an advocate for my kids is just like having a full-time job. It doesn’t pay- in fact, many times, it costs me money, but the benefits can be rewarding.

Advocating means spending hours on the phone with doctors, specialists, insurance companies, and medical supply companies. Making appointments and trying to navigate the red tape that often comes with insurance covering whatever your child may need. Ordering supplies and doing follow-up calls when needed supplied don’t arrive or are backordered.

Advocating means doing hours of research and note-taking, sometimes late into the night, seeking information that will help your child reach their full potential.

Advocating means being an organization wizard, keeping binders of notes and records, all color-coded and procrastinating putting it all on a flash drive for safekeeping (or maybe the flash drive part just applies to me!)

Advocating means going over your child’s IEP with a fine-tooth comb before signing it and taking notes at each meeting. It also means building a relationship with your child’s educational team as best you can, because these are the people who are most likely going to be spending almost as much time with your child as you are.

Advocating means education- in our case educating everyone from friends to medical staff about the condition my children (and myself) have, as it is very rare, and they are unlikely to meet anyone else with it.

I used to be painfully shy growing up. I would literally hide behind my mother’s legs when someone would try to speak to me, but in advocating for my kids, I found the voice I never knew I had.