Dealing with Disappointment and our JHS Journey.

Not only are "invisible" disorders / conditions difficult for others to see,

 believe, understand and accept, it's also hard for the person suffering (in this case my child) to keep dealing with the disappointment of missing out on a lot, on top of the pain they go through and all the effects of their conditions. 

For years we adjusted to Aspergers and the hurdles ASD put in front of us. We learned how to manage, how to help, how to avoid, how to cope.  We were able to push boundaries and assimilate into everyday situations. We are at the point now where I get those proud mother moments when others comment that they had no idea he has an ASD as he fits in with all the other kids well. All our years of therapy, all our supports and preparations each day help get us through and mean that day to day there is not much my son misses out on. By no means is my son free of ASD or 'cured' (I HATE that word by the way), it's a life long way of life and a life long condition based on a different way of being.

I honestly thought that ASD was the hardest thing to overcome for him and for others to understand but I think his other conditions are harder especially as he is getting older. 

My son's multitude of other 

diagnosed conditions include quite severe

Joint Hyper Mobility Syndrome (JHS)

and a bleeding disorder still in the diagnosis process which like everything

 else usually takes a few years.  

Now many children have hyper mobile joints. Many. They are simply 'double jointed' and more flexible than the average person. It can be fantastic for kids who want to be gymnasts and dancers.  They do not develop any problems from their loose joints. In a way it's a little like the Autism Spectrum in that there is a scale of severity. This is simply called Joint Hypermobility, it is not the syndrome. 

If you wish to find out if you or your children have hypermobile joints, click here to view the Beighton Score test.  If you score 4 or more out of 9 on this test then you have hypermobile joints. My son scores a 9. He is also missing some connectivity between certain muscles to allow him to do independent movements particularly with fingers. Many children on the Autism Spectrum have hypermobile joints. This can be evident by the characterised 'W' position sit that many ASD children do. 

Joint Hypermobility Syndrome 

is where problems arise from the loose joints. Chronic pain and other symptoms including extreme fatigue are two main characteristics of the Syndrome JHS. Most with JHS will go on to be diagnosed with Arthritis and degenerative joint damage. Other things to note is that anaesthetics do not hold as well for JHS patients.

Click here to view a comprehensive document on Joint Hypermobility and the Syndrome JHS.

My son is double jointed and flexible just like those many, many children, but has the chronic problems as well, hence his diagnosis of JHS.  Because the issue of hypermobility is fairly common, people cannot understand or see that the syndrome exists or how it differs from their child or their friend's child who has Joint Hypermobility.

How does JHS impact on my son's body?

 The arches of his feet and his foot structure 'collapse' and they don't perform their roles as they should and look like classic 'flat feet' and rolling in ankles. He wears orthotic shoe inserts to keep his foot structure in a more correct functioning position. Even with this, he struggles to run.  He shuffles and has no spring in his step.  His knees sustain high impact joint damage and he gets pain similar to an aging adult with arthritis. A fall where he lands on his knees can result in dislocation. The average person and even a 'double jointed' person can pick up a bowling ball and bowl a game with no problems. My son can dislocate his fingers picking up a bowling ball and when he goes to bowl can bend his arm backwards at the elbow causing pain. He gets shoulder pain and can dislocate using climbing walls and monkey bars. He gets back pain and even chest pain. 

The only visible clue you might have looking at my son, that anything is wrong, is his awkward clumsy walk or shuffle run, his lack of muscle tone appearing weak, poor posture and very soft pliable (baby like) skin. 

What you don't see is his fatigue. He gets very tired, very quickly and easily.  One of his doctors described it as being like living with Chronic Fatigue Syndrome every day, from the minute you wake up.  You don't see the cramping of his muscles which occurs due to the constant over stretching of his muscles. You don't see that it can keep him awake at night further exacerbating his fatigue. You don't see the pain he suffers when walking for a long time, which for us can be 10 minutes at a shopping centre let alone an outing at a theme park for example. We have a wheelchair we take with us to help. A child over a certain age and size can't be carried, put in a shopping trolley or a pram. You don't see his relief at being able to sit rather than walk.  You also don't see his embarrassment at having to use the wheelchair, particularly if we are around his friends.  He will push himself to the limit and collapse at home to avoid looks or questions or pity. He also resists using the neoprene braces for his knees, elbows, ankles and wrists when out in public.  He needs them when he is hurt but doesn't like others to see them.

You don't see his disappointment when he knows he can't do what others can do or misses out on an outing. Regular 'kid' things my son either cannot do, shouldn't do or struggles to do: 

• Jumping - this causes joint damage and pain. So no trampolining centres, inflatable worlds, backyard trampolines, skipping, etc.
• Climbing - this causes shoulder pain and dislocation risk. So no climbing walls, monkey bars, hand held flying foxes, no pulling himself out of a pool with the hand pull type ladders, no climbing trees or fences, pulling himself up onto a horse. Not only does he lack the strength to do these, he is in pain trying. 
• Riding a bike - the pushing of the pedals is painful and exhausting. Riding a scooter isn't easy either. Pushing with one leg means one leg is getting constant impact with the ground and one leg is bending to allow the other to touch the ground means on a bad pain day that it's not an easy activity. He rides a V-wing type scooter that requires no pushing or touching the ground. 
• Swimming - the constant kicking of the legs and shoulder/arm rotations (think freestyle, backstroke, butterfly stroke) causes pain and a lot of cramping. Cramping when in water can cause drowning. My son suffered cramping in the water from a 20 minute swimming lesson. He has learnt to swim and float and how to get to safety but he will never be a 'squad' training swimmer.  We do hydrotherapy instead. Even trips to water parks can prove hard. As waterslides are found at the top of many flights of stairs. Climbing these steps all day is very painful.  
• Bowling - we use a modified / disability bowling ball and he can only cope with one game. 
• Running - this is very difficult. Most children's games and playing involves running. Whether it be a game of tag, kicking a ball in a football game or seeing who gets to the swings first, they all involve running. My son shuffles at best, is slow, always loses the race or game and is exhausted, puffing, frustrated and upset. Particularly as it happens time and time again and was the cause of bullying at one school.  You don't tend to get called a loser if you aren't jumping on a trampoline with others, but come dead last in a running race and you get called a Loser every time and it's heartbreaking for a child. Add in an uneven surface like sand and the problems get a lot worse. So the beach is not a fun destination either anymore. 
• Fine Motor Skills like Handwriting, using scissors, drawing etc.
• Sitting for long periods.
• Standing or walking for long periods.
• Throwing, Catching, Kicking etc

If you take all these activities out of a child's scope of play, it's hard for them to maintain friendships. Other children do not see anything physically wrong with your child. They aren't confined to a wheelchair so there is no physical cue and reminder that their friend cannot run with them in a game. Children don't really understand when a another child says 'I can't run' or can't run fast or has sore legs. I don't place any blame for this on any child or any parent, it is no ones fault at all. It just is what it is. I am usually the bad guy and the nagging mother, reminding my son to slow down and stop trying to run so he doesn't end up in a lot of pain that night. But at the same time I see his desperate need and want to fit in with the other children playing so it's a difficult balance. 

For us, everything is compounded by the fact that we deal with a bleeding condition on top of this. In summer the bleeding can be a daily thing. We need to stay indoors in air conditioning. Blood loss makes anyone fatigued so on top of his 'normal JHS fatigue levels' it can leave him couch bound wanting to sleep all the time. Summer is when all his friends have a lot of fun. Water parks, outdoor park play, riding bikes, etc. Holidays with lots of time to go out and have fun. We miss out on all of that and through no fault of anyone, friendships drift over those 6 months. Depression often kicks in as disappointment grows at missing all the fun. It can't be helped but it's something we aren't getting over like the issues we faced with ASD. 

Last week my son fell when riding a scooter. He did damage to his knees as well as a little graze on each. To any other child, they would be back to having fun by the next day. For us it means much more.  We had to visit the Dr to check his knees as they both swelled and had an odd shape. To keep from further damage he has to wear his knee braces for a week.  The grazes don't heal well or quickly and easily turn nasty due to his blood issues. Wearing the braces made the sores worse so we have infection issues to deal with as well. One thing impacts another which makes another thing worse. Nothing is easy and everything feels like a drama. Then my son fell again, a few days after the initial fall. Everything is worse and the cycle starts again. People can't fathom how a simple fall and graze of the knees can turn into such a circus and prevent us from doing things for weeks. It's hard to explain without sounding like a drama queen. What's harder each time something like this happens, is dealing with my son's tears when he then misses something he was looking forward to (like an outing this weekend). 

I guess we will get past this too, learn to adapt and now that my son is 10 maturity is helping him not get so frustrated or blame himself for his inability to do as much physically, but the disappointment is hard to see on his face so often. 

Where we live, the weather is warming up and summer is practically here already. This signals the end of our social, active and busy part of the year. It's the start of my endless apologies season which sees me have to decline most invitations to fun play events that are usually all outdoor, physical and beyond my son's capabilities. I hate each time that I have to type our reason for not coming along. I honestly never thought we'd be 'those' people who disappear for months at a time, especially since we managed to get through the Autism issues relatively ok.  But that's us. And that will continue to be us for years and years to come. I just hope that as my son gets older and more mature, and the friends he makes during winter get older and more mature, that friendships survive the absence periods better. For now though, dealing with disappointment and depression seems to be a very large part of this journey we are on and one I wish would vanish. 

ASD and Homeschooling - My Autism Awareness Journey

Today begins Autism Awareness month. Over the last 5 years I spent every day of April (and many throughout the year) promoting Autism Awareness. I don't regret my daily awareness social media posts. I don't regret that because of them I have helped others become aware, recognise ASD in their own children, recognise the ASD issues in my child and help him, and ACCEPT ASD in all it's forms.

I also do not regret the many people who left my life because of those posts. The ignorant and self absorbed 'friends' who were annoyed by ONE post a day from me showing up on their news feeds. I even cut ties with family over those posts. Sending me a message to say you are 'unfriending' me on facebook because my one post a day clogged your news feed is not only an indicator of your lack of friends, but of your rudeness and general attitude which is probably the reason for your lack of friends in the first place. What I found funny was in each case, I was expected to apologise and to remain in contact with these people after the unfriending. Funny because they had to be joking right? 

 You may think that posting awareness messages was a negative thing to have lost large number of family and friends from my life over those 5 years. But that's not the case. Good riddance to them all I say. My awareness posts brought about the end of these relationships sooner rather than later and saved me a lot of wasted time and effort so it was a good way of thinning the herd.

The thing about being an ASD parent, is that you find yourself going through stages. There is the struggle before diagnosis, the bitter sweet shock and sadness at diagnosis, the grief and 'why us' stage, the confusion and finding your feet stage, the endless therapy stage, the school issues stage ... the list goes on.  Many people get stuck in the early stages and never move on from that, but many of us move through the stages and get to the acceptance stage. The place in our journey where we accept who WE are as parents, accept ASD for what it is, accept our kids for the awesome children they are, and work towards our futures. We don't look for cures, we stop reading the endless stream of articles listing causes. We stop living in the blame game, stop looking for the exit door. 

I'm at the Maintenance / Acceptance / Celebration stage. The "we've worked things out" and are managing stage, where the hard work of the past years is paying off. Where we might want to take on new challenges or just enjoy the place we are in.  We can see the good things about ASD, we can celebrate them. That's us now.

We've been through diagnosis, we've been through therapies, we've been through school issues, we've survived and found what works for us.

What works for us is homeschooling. 

Honestly, it's the biggest and best change we ever made to our lives and the benefits to the ASD issues we were facing will far outweigh any struggles we've had in finding our feet in the homeschooling journey. 

Now I will say, that homeschooling is NOT for everyone, it is NOT possible for many financially, physically or mentally.  It is not the answer for everyone with ASD. However it was the answer for us. It meant no need for medication, it meant no more depression and suicidal thoughts from my son, it meant improved health, it meant a huge reduction in anxiety, it meant less sensory overload, it meant less aggravation and frustration. Quite simply, it worked for us or I wouldn't still be doing it. We are in our 4th year of homeschooling and don't plan on stopping any time soon. It is by no means "a cure" as ASD is a way of life and a way of thinking NOT a disease, but it is the best option for us.

What improvements happened for us with homeschooling? 

• Physical changes: no more daily anxiety vomiting which meant no more stomach problems, weight gain (my son had not gained weight since he was 3.5 years old and started Kindy and was almost 7 yrs old when we started homeschooling), colour back in his cheeks, no more black bags under his eyes, sleeping through the night for the first time in his life, he smiled, he laughed, he played. He also grew a lot. Did you know, according to medical research, that anxious children have stunted growth?

• Emotional changes: my son was happy again. There was no daily tears, no anger at everything, frustration at everything, refusal of everything. He was no longer in shut down or meltdown mode every day. He would get excited rather than frightened. He was able to self regulate his emotions more and he was able to be calm and content for the first time. He was able to talk through his emotions. He felt he could really BE himself. That he wasn't being judged or singled out for his ASD issues. 

• Mental Health changes: after being suicidal, coming to us at 6 years old and asking which was the least upsetting way for a parent to find their child after ending their lives, my son's mental health did a huge back flip. He has NEVER gotten to a suicidal state since then (when we removed him from school). Even years of therapy with a psychologist had not been able to help his mental depressive state, but homeschooling did. His severe anxiety was significantly reduced and he was able to function again. No more hiding under chairs and tables, no more social withdrawal. He was chatty, he would approach people to talk and make friends, he was relaxed. One of the other huge positives, is that in your home, there is no class bully. There is no playground bully. You will probably still encounter a bully or two in a homeschool social group, but the difference being that the child has more self confidence than when at school, they have parent back up and support and the problems are dealt with directly and not brushed aside by schools. 

• Educational changes: my son has a very high IQ but struggled at school with little help and was getting C's and D's in all his subjects despite us being told he was in the highest portion of the class (doesn't THAT say something about our education system and mainstream schooling!). He was at the start of Grade 2 and could not read, spell, do basics. At home he was able to get one on one help with me, no distractions, no noise, no sensory overload, could go at his pace, could do a lot of revision work and concentrate on problem areas, could advance in areas he was good at. I could easily see where the deficits were and was able to pin point learning disorders that the school was unable to notice. We were then able to have those things tested for and diagnosed and put in learning supports and strategies. My son's first year at home we used a Distance Education school and his report card from them was straight A's and he received a Principals Academic Award. So not only were his results more reflective of his intelligence, but he was able to learn in a way more appropriate to his learning difficulties. My son now enjoys learning, he willingly gets a book to read. I can cater his education specifically to his needs.

• Sensory changes: I'd like to think that as children with sensory needs get older, that they all develop a tolerance to things that previously resulted in meltdowns or shutdowns. However this is usually a gradual process. For us, the first month at home there were huge improvements. Almost as if a switch was flicked as many issues appeared to change immediately. I think that in a school environment, EVERYTHING sensory is happening all at once and that's where the overload comes in and when the child falls apart. Many hold it together at school then come home and explode in meltdowns. Trust me, that meltdown after school child, is NOT the one you are trying to teach at home. At home, the sensory issues are somewhat separate from each other or in milder forms. There might be some noise, but it will only be one or two people talking or a TV in the background or a single light buzzing. But not 30 people talking in the classroom (with the rest of the school talking just a building away), ten lights per room buzzing, plus the noise of people walking, pencils writing on paper, paper shuffling, sniffling kids, school bell ringing, a sport class happening outside, a music class' noise filtering through the school, chairs being scuffed on the floor, a ceiling fan rattling etc. Being able to reduce the number of sensory issues is much easier at home. You already would have set up your home with their sensory needs in mind so there are lots of safe places at home for them to unwind. They will still have meltdowns but not as often, not as easily triggered and you are not as exhausted as you were in the past so can deal with them better and have a little more patience. My son can now tolerate a lot of sensory input that in the past he would not have been. 

• Social changes: while ASD children have social difficulties, they are not anti-social when in comfortable situations. Another great thing to remember is that ASD children are often selectively social. In school, children experience forced interaction which is not socialising, it is not a choice and it is not fun. This for an ASD child can be difficult to navigate and cope with. They are told they should have friends but most do not have anything in common with these peers other than sharing the same birth year. Many will withdraw, prefer to be alone, get bullied, and not enjoy 'making' friends. At school my son was bullied, he was alone most lunchtimes, he spent his play time at the library to avoid getting bullied in the playground, he did not have any friends, he was not comfortable being around others.  At home, my son is alone. He is an only child. He LOVES being alone in his OWN space. But not having forced interactions every day for 6+ hours means that he is open to being social now. When he goes somewhere he is not hiding from yet another social situation, he enjoys it and is open to making friends. He will have a conversation rather than a monotone response to answers. He will seek out children to play with. He will be present in activities rather than hiding from everything. Homeschooling can be isolating and as a parent you need to be pro-active in sourcing activities etc. There can be bad socialising experiences (and yes we experienced them and had set backs) in homeschooling but in general and in the longer term for us it has been positive and much better in terms of social development than when at school. It also means that we can have a day of being social with friends (yes homeschooling for us has meant making real friends!) and then a day of alone time at home learning to balance things out and not get too overloaded and tired. 

So homeschooling for us has not only been the answer to so many ASD issues we faced, but it has been the way for us to move forward, find happiness again and embrace being ourselves, ASD and all. 

This year, my drive to get out and educate everyone, to post daily awareness messages to everyone I know, has fallen away somewhat.  I am in a different head space.  Maybe because I am in the end stages of the process? Like many others in my situation, I feel I've passed the baton onto the next wave of ASD parents I know.  They are in the trenches right now and have the fighting spirit to get out there and spread the word.  I feel like I've done my time in the trenches, done my tours of duty. This Warrior Mum will always be a warrior, don't get me wrong, but I feel I've stepped slightly off the ASD battle field and as we currently have other medical issues to deal with and I feel my frontline experience is needed in a new battlefield next door.  It's part of being a parent I think, conquer one thing and then refocus and deal with the next. 

So I am not abandoning the Autism Awareness bandwagon, I am simply stepping aside for fresh louder voices to carry it forward. We live "ASD" every day, we spread awareness every day. 

 I'd like to finish off this post with something to watch. This children's cartoon is great to watch, great to get your children to watch and so helpful in spreading awareness, understanding and acceptance. If you are going to do anything this April for Autism Awareness month, then let this be it. If it changes or improves the way you view Autism and Aspergers in children, then this blog post was worth it. If your children learn how to be friends with an ASD child then it will make many ASD children and their parents very happy.

While our journey with ASD will never be over, and it will have it's ups and downs, it will have it's 3 steps forward and 2 steps back ..... it's not a fight for us now, it's a truce, a peace treaty. You are always on guard - but you can relax a little. At the end of the day, I hope all ASD families get to this place in their journeys too.  Having awareness, understanding and acceptance of this Diffability (Difference in Ability not Disability) is the KEY to moving forward.