I am a life learning Mama and this page is where I like to share things that resonate with me in some way along this wonderful life journey we are on ♥

Saturday, 2 July 2011

Parenting a child with 'Special Needs'

Not sure I like the term “special needs” but I use it. What does it mean? Having a quick check on Wikipedia it depends on where you live in its definition! However, the country I like best in its interpretation is Germany where special needs children are called “besondere kinder” (“special children”). I like this term best – if I bother to check every country’s definition I may find something better, but for me now this sounds right. I know all children are “special” but for some of us parents the term has a real depth of meaning that perhaps others have not experienced? I have two beautiful children, one of which is diagnosed with ADHD/Aspergers with Dysgraphia and is Gifted! Yes he is truly VERY special. In fact he is one of the most amazing people in my life. In his 15 years of life he has struggled against a system that does not always recognise difference. He inspires me, constantly challenges me in both good and bad ways and is one of the kindest kids I know! If you let me, I would like to share some of our special journey.

He was born on a beautiful sunlit morning. I remember this little bundle of newness being handed to me swaddled in a blanket opening one wise eye and checking me out. What did this cute man’s future hold? My imaginings for our journey together were not really in tune with the reality as it turned out! He was a gorgeously cute baby (as they all are!) and made everyone smile. However, from a young age I knew that something was different about him. It was always his name I heard being called – called away from mischief mostly – not an intentional mischief – it just seemed to search him out! If he could find a way of doing something differently he would. If everyone was going left, he would be going right. If they were going up, he would be going down! He could get away with it whilst he was tiny but then once past being a toddler it became a diagnosed problem. Phone calls from day care, after school clubs, swim squad, holiday programmes – you name it – they would usually call me and tell me of some sort of problem they were having with him. It is not something that I would wish on any Mother. You want to be told good things about your child. You want your child to be liked. You want your child to be invited to birthday parties, play dates and other social gatherings. It hurts to hear the whispers, the judgmental looks. I always vowed that I would speak out for these kids when mine grew up. My son is growing up and doing well now. I did not always think this would be the case! It has taken a lot of hard work, commitment and a thick skin (of which I have very little!). The journey has at times been painful and I have cried many tears. However, I want parents to know that if your child is indeed “special” like mine there is light at the end of the tunnel if you work at it.

Don’t read all the doom and gloom books (or which there are many!) Don’t listen to every specialist without questioning their advice. I have often gone against the grain with the treatment of my son’s disabilities and trusted my mothering instinct. We do not take medication. I wanted my son to know himself as he is, not a medicated version. I wanted him to learn strategies to manage his behaviours. We have looked at diet. We do not do artificial additives. It helps! We drink plenty of water and get adequate sleep. It helps! We talk and discuss things, we share ideas and try to work as a team. Some say parents should not be their child’s friend. I am. It helps (or it has for me!).

I am so proud of my son and what he has achieved in spite of his disabilities. He is an avid Surf Lifesaver serving our local community. He is known in our neighbourhood for being a kid that will help someone in need, especially the sick and the elderly. Without doubt he is “special”. I hope that this blog gives strength to other Mothers who may sometimes feel so alone living with a child who is different. I have been abused and bullied because of my son’s differences. No Mother should have to endure that. Believe in yourself and your child and you too will see the light and when you do I hope that it shines as bright as the light I see now. Blessings to our “besondere kinder”

Kids Who Are Different

Here’s to the kids who are different,
The kids who don’t always get A’s,
The kids who have ears twice the size of their peers,
And noses that go on for days ….
Here’s to the kids who are different,
The kids they call crazy or dumb,
The kids who don’t fit, with the gut and the grit,
Who dance to a different drum ….
Here’s to the kids who are different,
The kids with the mischievous streak,
For when they have grown,
As history’s shown,
It’s their difference that makes them unique.

- Digby Wolfe

Home Schooling a 2e Child

Home schooling a child with ADHD/Aspergers/Twice Exceptional (wow what a label!!!!)

I have been asked many times what it is like to home school my son who was diagnosed age three with ADHD and then having started school got a few more labels added namely Aspergers with a mix of Giftedness, together with a learning disability, known as Dysgraphia and all combined together makes for a beautiful but somewhat challenging young man.

I began my home school journey around six years ago when my son having been stood down from most schools (including the one at which I taught) began attending an alternative school in Auckland, that catered for children that were somewhat outside of the ‘norm’. This was a disaster and Samuel became depressed after countless episodes of bullying. My son is a very upbeat person and I really could not stand by and watch his whole personality change before my eyes and all in the name of gaining an education. Henceforth I took a deep breath, argued my case with my husband and decided to bale out of the traditional system and try ‘school at home’.

I was nervous about my decision and really wondered whether I was up to something so ‘different’. I had never questioned school really and certainly had no experience with home schooling, nor knew of an other people home schooling. However, one of the first things I did was reach out and find my local home school community and I really began to tap into what they had to offer. It was not always successful as even within that environment Samuel stood out as different, but it did give me a reference point and somewhere to turn to when I needed help.

At home, to begin with, we really did very little (unschooled), to give ourselves a breather from the stress that had amounted for us both due to what had happened at school. It was a wonderful time where we enjoyed each other’s company, relaxed and planed our way forward. I had trained as a teacher the year before I decided to home school, which is funny because it really fired my enthusiasm for leaving the system! I saw how difficult it was to cater for children who do have extra needs, whatever they may be and it gave me the passion to make a difference for at least one child who struggled against the grain, namely my son. 

Another benefit for being a ‘qualified’ teacher it gave me some kudos when people asked why Samuel was not at school. I would tell them he was ‘home schooled’ and that I was a trained teacher and they seemed to accept this as better than if I was not! The fact is ANYONE can home school and my training had no benefits to me other than enabling me to see school both from the perspective of a teacher and as a Mum with a child that has ‘special needs’.

Once we had settled more with our decision to home school and accepted this next stage in our ‘educational’ journey Samuel and I decided that a topic based approach would be best. I initially started by running our day very like school with lessons in 45 minute blocks. This really did not work for us and neither was it necessary. Children with ADHD often lack focus and are easily distracted so I found it good to have a quite space for Samuel where he was relaxed but without constant interruption or unnecessary distractions. We compiled a little timetable to help with his organisation, which he really struggles with, but flexibility within that was the best for both of us. Samuel often hyper focuses (another characteristic of both ADHD and Aspergers) and rather seeing that as a deficit we let it work to our advantage. If Samuel was really fired up about a subject and wanted to work on it all day then that was fine. It was amazing how much he covered in a few hours without all the constant interruptions. I also found that when Samuel chose his topic it gave him ownership that also fuelled his motivation, which is not always there with these children. He is a bright child who thrived on this and rather than relying on a teacher for the answers he really wanted to just problem solve and work it out for himself.

Another benefit we found was that where at school he had been conscious of his inability to write and was embarrassed by it because of remarks by other children, at home he had none of this pressure. We did not focus on writing and indeed I helped to teach Samuel to type and would also get him to use a dictaphone to transcribe his stories which I would then type for him. When he was at school he spent many lunchtimes kept in to write up what he could not do during the lesson. The fact is Samuel will never be good at writing in the traditional sense however many ‘remedial’ lessons he receives so we decided to focus on his strengths and build up his self esteem again.

He has exceptional abilities in maths and computing and I felt unskilled in those areas so we decided to tap into distance education where he was able to do papers at his level, which was above his chronological age. He loved this time and built up a rapport with his distant education teachers that did not really materialise at mainstream school. Mainstream school teachers judged Samuel on some of the more challenging behavioural aspects of his condition rather than on the ‘whole’ person. Samuel at home talking online was not judged and neither did many of those ‘behavioural issues’ surface when he was working in a more relaxed, unpressured environment.

We have carried on in this way over the years until recently when Samuel decided that he wanted to do Software Engineering at University. We approached the local University and made enquiries as to how he could get in without the traditional qualifications. On research for us we found the best way for Samuel would be to enrol in Distant Education full time and he is now doing his OP subjects. He has been accelerated a year and is also attending University one day a week which he is loving. He is now 15 and for me looking back over the years I am amazed at how far he has come. I at times worried so much for his future because I was made to worry. Since Samuel has been home schooled we have really dropped many of the ‘labels’ that seemed to be so necessary for him during his time in mainstream. We have no need for labels at home. He is just Samuel. He no longer goes to all the ‘specialists’ he used to, who tried to ‘fix’ him. I am no longer made to feel guilty because I choose not to medicate him. I have found home schooling to be the best thing that we have ever done and for anyone who has a child with ‘special needs’ it can be so rewarding. I have really seen a blossoming in my child and I hope that my story may help, inspire or encourage others to take that initial step for a better future for our children who march to a different beat. J

Our Journey without Drugs

I was told by a ‘specialist’ when I refused to give my son Ritalin that what I was doing was an “indirect form of child abuse as I was not offering him the window of opportunity to realise his full potential”. He was 3 years old. Yes, he was getting into trouble, yes he was a handful, yes he could be challenging! However, I stuck to my guns and at the age of 15 he now attends University one day a week and goes full time next year studying Software Engineering. I kind of think he is realising his potential drug free! Drugs are not always the only answer, if the answer at all for some.

Things were hard at times and it has not always been an easy journey. I am proud of my son and what he has achieved. He knows himself as he is – not a drugged version – and is doing well in all areas of his life and he is my friend as well as my son. He is diagnosed with ADHD/Aspergers and is Gifted but also has learning difficulties, namely dysgraphia. We have worked together to find solutions to problems without the use of drugs and I really had to fight hard to convince Drs, schools and the so called ‘specialists’ of whom we have seen many, that I felt my way was best. It is only now that I really know for sure that my way was the best for us and I am so proud of what we have achieved and that I stayed strong against those who tried to convince me otherwise. I hope that speaking out gives other parents the strength to follow their heart when sometimes it feels like you are really alone in your decisions. It may not always be the easiest of paths, but for us it was the right one and I hope that speaking out will encourage others to follow a similar path to our own.

On reflecting on why so many children seem to be given medication for conditions such as my sons, I cannot help but wonder if our children just need more of our time but unfortunately in this time poor age it is often somewhat lacking. I am not saying that medication does not have a place for some, but I think they are all too often given out without having tried any other interventions. Again a ‘time poor’ solution – drugs are a quick fix but do nothing for the underlying issues! My son is living proof that there are alternatives that are far better for both body and mind! It was often a lot of hard work and believe me when he was younger, I questioned my decision not to medicate at various times along our journey. Children with these conditions can be utterly exhausting. However, it is something I believed in and I am happy with my decision. I think we always need to support each other whatever our decisions and also find what works best for each individual case. I just like to get the word out that drugs are not always the answer and wish everyone the best whatever path they choose :0)

Homeschooling Volunteer Lifesaver

Both my son and I are volunteer Surf Lifesavers at our local Surf Club. I never in a million years thought I would ever do this (and certainly not having emigrated from a country town in the UK where I had never seen the surf let alone needed to be shown how to use a shark alarm!). However my son decided on arrival to the Sunshine Coast that he really wanted to join up. I remember accompanying him to the beach and jumping around in panic as I saw him being swept at a rather swift pace in a rip and wondering what I should do. He was smiling, having fun and no one in the club seemed remotely concerned – only me – his mother! I later learned exactly what a ‘rip’ was and that they were very useful to get out the back of the waves quickly, which in my son’s case is paramount not only if he needs to do a rescue, but also because he now competes at both State and National level. 

Recently he has just returned from the Aussies having been awarded a Bronze Medal working as part of a team. I mention this as I am immensely proud as my son is diagnosed with ADHD and Aspergers. Working as part of a team is not something he has ever particularly excelled at. However our local Surf Club has offered him many opportunities to learn about working as a team and getting along in a group which is an essential skill within this field and indeed life in general. Most beach rescues are a team effort and it is wonderful to see young children and teens honing these skills which will always be useful in later life.

It has also given us opportunities to mix with others and meet people from all walks of life. The teenagers that he associates with in my mind are just inspiring as are the younger Nippers. They have caring attitudes and learn amazing life skills. My son at the age of 15 has not only gained his SRC, Surf Bronze but also his ARC/Defib qualifications, his Senior First Aid, IRB Crew certificate and is a very active member of the club. He attends as many patrols as he can and has for the past two years been awarded for the outstanding number of hours he has put in at the beach helping to keep people safe.

Because of his found passion in the surf it enticed myself to do my Surf Bronze which is no mean feat as at the age of 42 I had never set foot in the surf, let alone paddled a rescue board!!! I managed to pass my Bronze Medallion and it has given me so much respect for both our paid and volunteer Surf Lifesavers who put their lives at risk to save others every year. I attend a voluntary patrol once a month and have really enjoyed getting to know a lot more about the fabulous volunteer Surf Lifesavers that patrol our beaches across the whole of Australia. These clubs are completely run by volunteers and without these selfless people they would not exist. They attend patrols on all the major public holidays including Christmas Day and all in our club do so with pride and a smile on their face. We may have opted out of the school system for a variety of reasons, but we have not opted out of community life altogether!

Volunteering teaches children many important life skills. Not only does it add that critical element of socialisation, that many people (who don’t homeschool!) seem to worry about, with those of his or her own age, plus those older and younger, it also gives many more specific skills as I have highlighted above. Many positive personality traits like persistence, commitment, and the ability to work in a team are learned in a volunteer environment.
Volunteer experience can also be immensely helpful when it comes time to apply for college, university or a job. Depending on your method of homeschooling, and whether or not your child has sat any formal exams, you may have trouble applying for college in the traditional way. Having an impressive portfolio of volunteer experiences will benefit your child and help him or her stand out from the crowd in another positive way.

Volunteering is a fantastic way to take advantage of the freedom that comes with homeschooling while giving back to the community and helping your child learn important life skills. It provides an amazing sense of charitable giving and selflessness that I feel can only be viewed as a good thing. Happy volunteering everyone!