Happy New Year!
 
I’m late, I know. My mother often shares an anecdote, of how I was born two weeks early, my head crowning as she exited the taxi in the early hours of the morning on New Years Eve, and she ends it with how I’ve never been early for anything since….
 
She’s right.
 
I am that mother that calls the school on the first morning of term to “Check that the kids come back to school today”, because I’d lost the newsletter with the term dates at the bottom (Not so much these days thanks to the wonders of the internet –yay!).
 
I’m also the mother that runs across the school playground moments before the school play starts, rushing into the school hall scanning the kids faces for my child, then annoying the other parents by asking them to “Scooch down” so that I can be in the best position to video my child….
 
I’m the mother that forgets that there is nothing in the house for dinner and who after being scorned by her children when she tries to pass of breakfast cereal as a suitable evening meal for the second time in the week, gives in and orders a take-out meal – probably also for the second time in the week.
 
I’m also the mother that tries her best.
 
I am not perfect, and whilst there is room for improvement, I don’t think that there is any parent that gets everything right all of the time. We are all just ‘winging it’, hoping that one day our children become balanced adults, not too traumatised by their childhoods to live successful, happy lives.
 
So, if I were to make any new years resolutions this year (because I’m late doing that too), at the top of the list the first one would be something about giving myself a break, or going easy on myself….
 
Something to serve as a reminder, that I am always doing my best.

Whilst some may shun the New Years resolutions posts that are likely to flood our social media feeds in the next coming days, I happen to think that they might possibly do some good.

Always eager to raise awareness of special needs, I've taken the opportunity to compile a list of five (I could easily have done more) resolutions, or goals even that could possibly help a family raising a child with special needs.

1. Do some research. This one is easy. Google 'special needs' and you'll be faced with a mountain of information. If you haven't chosen a condition in particular, click on any link you find. It might bring you to a blog, or a site that might give you information from a perspective on a condition that you've never thought of. Even if you are familiar with special needs, I can guarantee there's a condition or disability that you do not know about. Find it. Find out how it affects an individual and the family who support them. As simple as it seems, 30 minutes out of your time researching a special need or disability might save a family unnecessary judgement or weird stares (which we HATE).

2. Donate to a charity. This could be in the form of a regular donation or a simple one off small, tiny payment. The vast majority of advice and support that families receive come from a charity of some kind. Healthcare systems worldwide are simply not equipped to deal with the amount of families that need them. Raising a child with special needs is emotionally and financially taxing and whilst you might not get a direct thank you from a family benefitting from your donation, rest assured it will be well received and appreciated.

3. Take part. Get involved in a run or walk raising awareness for a charity. If you have health or weight loss goals, this could be a great incentive to get fit or help you along the way, whilst fundraising for a great cause.

4. Volunteer your time. Volunteering your time with a special needs related charity might be a great way to add skills and experience to your CV, and might even assist with a career change if that's your goal. From administrative work to befriending or outreach, there's an abundance of charities that would be appreciative of the skills that you already have.

5. Donate unwanted items. New year often initiates clear outs or decluttering. Many charity shops or outrech programmes might be able to put your unwanted items to good use.

I know that you judge me when you see me in public with my child.

 Even when he isn't having a meltdown, he might be talking too loud, or about something inappropriate. He might be aggressive or not aware of boundaries. He might invade your personal space. 

I know you judge him, and I know you judge me. 

Just know that I judge you too. 

When you roll your eyes and shake your head, I see someone without tolerance and understanding. When you whisper and make rude comments, I see someone that hasn't learnt that everyone has the right to occupy the Earth and is entitled to be who they are. When you make me feel uncomfortable I see someone who sees a kid and its mother already going through a hard time, and tries to make it worse. 

So whilst you're judging us, I'm judging you too. And I know who I'd rather be. 

On 24th May 2010, Reginald 'Neli' Latson a 19 year old with autism sat on the grass outside his local library waiting for it to open.  The police received a report of a suspicious looking black male wearing a hoodie outside the library, possibly with a gun. 

The police locked down the local elementary school and sent Deputy Calvery to approach Neli. Deputy Calvery approached Neli and searched him and found no gun. Deputy Calvery asked Neli his name and received no reply. Having done no wrong, Neli tried to walk away. Despite the fact that Neli had committed no crime, Calvery grabbed Neli and attempted to arrest him, he didn't read him his Miranda rights or state the reason for the arrest. A struggle ensued and Neli grabbed Calvery's pepper spray. Calvery did not call for back up, instead he threw him against a car. Neli slammed Calvery against the pavement and sprayed him with the pepper spray and hit him. 

Neli was held in isolation without bail at Rappahannock Regional Jail. His mother was allowed one visit and reported that Neli was unable to communicate with her and was in a catatonic state. 

After a three day trial, Neli was found guilty of among other crimes assaulting a law enforcement officer. A 10 1/2 year prison sentence was recommended. 

The defence cited Neli's autism as a reason for Neli refusing to state his name, not understanding the situation and responding in the manner he did to being grabbed.

Neli was placed in a state mental institution for 30 days for treatment and evaluation and returned to jail where he spent one year and eight months in isolation. 

Whilst in solitary confinement after his initial arrest, Neli urinated on the floor and licked it  up. 

After threatening suicide, he was moved from a normal isolation cell into a "crisis cell" which was an empty concrete room with no bed and a hole in the floor for a toilet. Whilst in this cell, he hit a guard and was tasered. Neli's mother reports that he is gaunt and has lost more than 50lbs. 

Funding was secured for Neli to move to a locked treatment facility in Florida, but as he was found guilty of further charges following him hitting the guard, he remains in solitary confinement. 

Neli could be my son. He has autism, he is black and he wears hoodies. If you ask my son his name, he probably won't answer. If you try to grab him without him expecting it, he might lash out. If you speak aggressively towards him, he will shut down and not respond, if he does, his aggression won't be proportional to yours. 

There are a million reasons why Neli should be pardoned and released. Some autism related and some because Neli's arrest and detainment in continued isolation breaks so many of his basic human rights. 

When I look at Neli, I see my son and it scares me. 

I write this in tears because my son is only seven yet I fear for his future and safety for reasons a mother should never have to. 

 
 *Below is a link to sample tweets and hashtags to raise awareness and help free Neli*

http://autisticadvocacy.tumblr.com/post/103045720072/sample-tweets-to-help-freeneli

Right now, you're probably preparing for your first day of the new term, excitedly anticipating the kind of year you plan to have. 

You've probably finished your scheme of work, and drafted your lesson plans and can't wait to impart knowledge on the young minds that will start your class today.

 I hope more than anything though, you're well rested. 

Here's a little secret: At nine o'clock this morning, I will bring my son into your class, and everything you thought you had carefully planned will more than likely be turned on its head. Here's another secret: By the end of the year, it will all have been totally worth it. 

My son, in spite of and because of all of his difficulties, struggles to understand the simplest of things , yet wants to understand EVERYTHING. He will look to you for knowledge. Sometimes you will have the answers - sometimes you won't. There will be tears and tantrums. There will be meltdowns and madness. There will be times you think that it is all too much. 

My son doesn't always appear to want to learn. With his limited ability to express emotion, fear, confusion, disappointment and self doubt are all often expressed as anger. His eagerness becomes interruptions, his curiosity manifests itself as naughtiness. Please don't give up on him. Please try to understand him and harness his thirst for knowledge and help me to unleash his full potential. 

You'll have to modify your lessons plans and change the classroom around. If you think you already have too much paperwork, then I estimate that its about to be doubled. And you know how teachers always complain about the extra-long working hours? They're about to get longer….


Oh yes, and then there will be me. I will be there, asking for quick chats at the end of the day, handing you fistfuls of printouts on my sons conditions, and suggesting books you can read to help you modify your curriculum for my child (as if your workload wont be heavy enough). I'll be requesting your attendance at meetings and holding impromptu mini parents evenings throughout the year. It won't help you at all that I am a teacher too. But trust me, by the end of the year, it will all have been worth it. I promise you. 

In between the impulsivity, anger, tantrums and meltdowns, there will be the moments when after trying to teach him something for weeks, he does it on his own. There will be the times when he gets something right and beams with pride in his own little way. There will be the moments when after struggling for your attention and approval you give him the tiniest pit of praise and you can see how proud he is of himself that the entire reason you became a teacher will be momentarily personified in him. 

So thank you in advance. Thank you for all the extra work, time and effort that you will have to put in. I know it won't be easy but I know it will be worth it. 

Overwhelming day: Part 2

To the security guards at Billingsgate fish market

You had no idea of the journey we had endured to get to the market. You didn't know that my son has autism and a major obsession with fish. You were not aware that I had been promising him a trip to the market forever. You don't understand the total devastation we felt when we approached the entrance and you raised your hands and said "No kids allowed". You saw my eyes well with tears as two of you tried to explain the health and safety reasons why he couldn't go inside, you heard me mumbling about his autism and obsession and my promise. I saw when you whispered to each other and then one of you came back to me and told me to buy my fish and come back to you with Zidane. 

Whilst the rest of you manned the entrance, one of you escorted Zidane to the side of the market. You let him see the live lobsters in the tank. You went and got a live crab and let him touch it while it moved. You answered his constant questions and chatted with him. You turned what could have been a total disaster into an amazing experience for him. You gave him what he called "A day of coolness" 

You didn't have to do it. I didn't catch your name but what you did was not only amazing for Zidane but it restored my faith in human nature. 

Thank you. 

*The picture is of Zidane, the security guard and the crab*

I've had the most overwhelming day, and it's only 9.47am. So overwhelming that I have to break it up to tell you all about it. 

Part 1 

I had planned a special day for Zidane to Billingsgate fish market (see previous posts about Zidanes fish obsession) so we set out at 5.30am. Our prebooked taxi didn't arrive, so I figured we could go by public transport. It was supposed to be two 30 minute busjourneys but the first bus terminated early because of a disruptive passenger so I decided we'd get on the underground instead. We stepped onto the escalator to descend onto the platform. I totally forgot that two months ago Zidane had a frightening ordeal when his shoe lace got stuck in an escalator. As soon as he stepped on, he jumped back of screaming - I wasn't as quick as him and tried to run back up an escalator that was going down. It's comical now, me fighting a losing battle to run up whilst screaming "help!" to nobody at all because there's no staff there so early. 

I ended up sitting on the floor of London Bridge tube station cradling my terrified baby for 20 minutes while people walked around us. 

But guess what? When he stopped crying and I said we would get something to eat and go home he said "No. I'm going down". 

And he did.

I might just be the proudest Mother ever.

To the lady with the tattoos in the café at the fish market

When you served us, you were not aware of the day we'd had. You were busy, yet when my son whispered "Cool tattoos", you replied and chatted with him. When we went to sit down, he asked me to take a photo of your tattoos so he could remember "what a cool day we had". I told him we would have to ask permission first. He said he didn't want the picture anymore because you would say no. I asked why he thought that and he replied "That's what people are like" 

Unbeknown to you, I approached you with my son watching keenly. He wasn't just watching me take the picture, his opinion of "what people are like" was being transformed. 

As you posed and lifted your sleeve so I could take more pictures a shy smile spread across his face. 

When I got back to the table, he looked through the pictures and said "She's the coolest lady ever". I tried to correct him "Is she cooler than me?" He replied "Yup. A lot cooler". 

And so cool lady whilst you've taken the title for the coolest lady from me, you've gained my undying appreciation and respect, because whilst I doubt you were doing anything other than being the fabulous person that you are, my son was watching. Thank you. 

I posed this question on my Facebook page yesterday, and it made me wonder: If I could wave a magic wand, and my son be free of Autism, ADHD and his other special needs, would I? Yes. Without hesitation. 

As an active campaigner of understanding of special needs, I insist to the world that autism does not define my son but by saying "No", I am saying that it does. Zidane is who he is, not because of autism, but in spite of it. 

I have two neurotypical children in addition to Zidane. If there was something that I could do that would give them a head start in life, wouldn't I be expected to do it? The ability to take away Zidane's special needs would put him on an even playing field with other children, that would be a good thing. Zidane lives in a state of constant confusion as he tries to understand people and  the world around him, I would do anything to be able to change that, to make him able to interact and behave as he wants to. 

I love my son unconditionally and with that I accept all parts of who he is. Had he not had autism, and instead suffered with eczema, I would not insist that his itchiness and red sores were a part of him and I would never change them for the world. His unseen ailments are no different. 

…..but there is no magic wand. My son DOES have special needs and all the wishing in the world can't take them away. I accept that, and I am prepared to do whatever it takes to give my son every opportunity that is available. I am prepared to tirelessly campaign to raise awareness so that he can live in a world that is accommodating and accepting of him and children like him. I am prepared to seek out different ways for my son to learn and to progress, and to celebrate the child that he is at every step of the way. 

My son is special, with or without his 'special needs'. 

Special needs parenting is lonely. Even when you're surrounded by people, it's as though you're all on your own if those people don't understand what you go through. Even throughout the good times, it's hard to get another parent as excited as you are over what might seem like a silly accomplishment to them but was the result of a lot of hard work for you. Your reality is different from the world that everyone else seems to live in and it feels as though you either live two lives - keeping up with the rest of the world whilst maintaining the one you really reside in, or you isolate yourself and only entertain anything that is relevant to you and your child. Both are exhausting. Both are lonely. 

If you're the parent of a child with special needs, create a support network for yourself. There are millions of forums, groups and blogs online where you can converse with other parents in the same situation as you - even better, try and meet with a support group in your local area. 

If you have a friend or family member with a child with special needs, ask questions. Do some research. Let them talk about their child, their life and their reality - not with your judgment or opinions, but with a genuine interest in what they have to say. Allow them to celebrate their child. We all want to share a part of ourselves and our world with the people around us, but we want the people around us to be interested and to care. 

There are seven billion people in the world. Why should any of us ever feel lonely?