If you want to know what it’s REALLY like to live with Autism, get to know some Autistic people who can tell you (with their voice, or not) their perspective, each will be different.

Get to know your average teenager Carly, Gifted poet Emma (both of whom happen to be non-verbal and “severely” Autistic), Neurodiversty Activist Corina, Psychology today blogger Lynne Soraya and Animal Rights activist Dr Temple Grandin. The most striking thing about these people when you first ‘meet’ them may be that they are not Autistic, they are extraordinary, everyday People, with Autism.

Each statement in this article, is based on my experience, or another persons experience I have read or heard about, this article does NOT sum up the entire experience of Autism, doesn’t even begin to attempt to, it’s just a glimpse, a conversation, an invitation.

As a parent

For a parent Autism means many things, and different things for each parent. Sometimes it’s very hard, and sometimes, it’s a beautiful gift.

It is like never hearing your teenagers voice, but communicating in ways that you would otherwise not even notice.

It’s like, taking your 4 year old on that trip to the playground they are so excited about, even though you know it’s going to mean an hour or 3 meltdown (or tantrum of all tantrums) when it’s time to leave.

It’s like a change of plans that’s going to devastate your 5 year old and mean a tough few days (or more) for the whole family while they adjust.

It’s like getting a whole new perspective on the world you never would have had. Seeing, hearing, smelling things you otherwise wouldn’t have noticed. Thinking about things you otherwise never would have considered. What if the world ran out of toothpaste?, What if we only had a thumb and no fingers?, You’re right, parrots that talk are personified in real life.

It’s like allowing your child their own way in the world, and standing back, like any parent does, but knowing much of the world isn’t going to understand.

It’s like not attending that get together because you know it’s going to be too overwhelming for your child.

It’s like going to that get together anyway, and watching your child walk backwards and forwards, oblivious to the other children.

It’s like having all the beans from a bean bag spread all over your house. Every day.

On bad days, it’s like having your parenting scrutinized, criticized, questioned, picked apart, blamed etc. On good days, it’s having your parenting praised, supported, advised, understood, accepted, celebrated, replicated.

It’s like parenting, from a different angle. Much of what children on the Autism spectrum need, are things that all children need, only more carefully planned, more structured, more tailored, more sensitive (and more sensory).

As a child with Autism

There is a quote in the Autism Community “Different, not less” and that is the attitude we should take to children on the spectrum.

It’s like lights that are too bright (or not bright enough), sounds that are too loud, smells that are too strong (or not strong enough) and people that hug too tight.

It’s like finally finding that one thing that feels just right in your mouth or on your skin, and not wanting to let it go.

It’s like listening to your favorite song, or favorite sound, on repeat.

It’s watching your favorite show, and memorizing the whole script.

It’s like wanting to tell everyone you belong, but not being able to make the words with your voice.

It’s like this world wasn’t quite designed for you, but doing your best to learn how to live here.

It’s like wanting to play with the other kids, but not quite knowing what to do with them.

As a sibling

It’s like hearing people use the r-word and knowing it is degrading to your sibling.

It’s like knowing how to be humble, loving your sibling unconditionally, but sometimes feeling like it’s just not fair.

It’s like your sibling getting all the support, and knowing you need it too. Or being able to talk about it at a sibling group, with other siblings of people on the spectrum and having them understand.

It’s like a special connection with someone, you know other people don’t have the gift of having with them.

It’s like learning with your sibling, and learning from them.

It’s 10-50% likelihood of having an Autism Spectrum Disorder.

Click here to view the embedded video.

As an adult with Autism

There is another saying in the Autism Community “When you’ve met one person with Autism, you’ve met one person with Autism.” It’s different for everyone.

It’s like a conversation about Autism, that doesn’t include you.

Click here to view the embedded video.

Despite international effort the siege continues and Gaza has yet to recover from the now 2 year old devastation of both infrastructure, personal lives and families. The population of Gaza continue to be impacted by bombs and blockades, and by international indifference.

Please read and comment on my post on the 1st anniversary.

• More about World AIDS Day.
• More about the day here.
• UNAIDS Website.
• Wikipedia World AIDS Day page.
• Positive Muslims.
• Tweets tagged with World AIDS.

See also our AIDS and Muslims post.

According to this article ‘Facts about suicide‘

• Industrialized countries have a higher rate of Suicide than Developing countries.
• Women are 2 or 3 times more likely to attempt suicide than Men.
• However Men are 4 times more likely to be “successful”.
• About 1 in 3 American teenagers have contemplated suicide.
• Followers of religions that strongly prohibit suicide, like Christianity and Islam, have a higher suicide rate than those religions which have no strong prohibition (e.g. Buddhism and Hinduism.)
• Worldwide, the prevention of suicide has not been adequately addressed due to basically a lack of awareness of suicide as a major problem and the taboo in many societies to discuss openly about it. In fact, only a few countries have included prevention of suicide among their priorities. (WHO)

According to the statistics, majority Muslim countries have a relatively low suicide rate. However in the US the rate is higher and Muslim teens especially are not immune, suicide is the third leading cause of death in the US among everyone between 15-24yrs.

Reading and Resources

Read this article documenting one young brothers struggle with Suicidal Thoughts and Bi-Polar.

Find MuSSA (Muslim Survivors of Suicide Association) on facebook for free online counselling and support.

National Suicide Prevention Lifeline (U.S.) - 1-800-273-TALK

1-866-NASEEHA (U.S. & Canada) www.naseeha.net

The Sakina Center (worldwide facebook councelling) www.thesakinacenter.com

Muslim Youth Helpline (U.K.) 0808 808 2008 www.myh.org.uk

We live in the age of technology and communications. 50 years ago, computers as we know them today did not exist. The internet was but a dream. Mobile (cell) phones were far off and communicating with someone in another place was lengthy if not impossible!

Nowadays, most people have access to the internet in some shape or form, giving rise to a whole new manner of communicating with one another. Not only is it estimated that around half the world’s population now own a mobile phone, but these phones now have internet connection and video phone technology. Laptops and PCs with built–in webcams are becoming increasingly affordable and the result is now that not only can you talk to someone on the other side of the world, but you can actually see them when you speak to them as well.

For our children, this means they are growing up in a totally different world to the one that we may have experienced at their age. They have a world and wealth of technology at their fingertips and technology and they are able to seek knowledge about life with increased ease. Whilst this sounds wonderful, it comes with hidden dangers and places on our children increased responsibility and decisions.

If you are roughly the same age as me, you will remember children’s campaigns that taught that if a stranger in the park offers you sweets, then you should say no and tell an adult. This indirectly meant that when a child was out of the house, this was really only the time when parents had to be truly on their guard and that if their son or daughter was in their bedroom, then they were safe and secure from the dangers of the outside world. Sadly, this isn’t the case any longer – children can have access to a whole heap of inappropriate information and images from the comfort of their own house. Strangers, those with unhealthy , dangerous or illegal intentions towards your child, can be talking to your son or daughter right in front of you from another corner of the country or world.

Recently this issue has increased in notoriety and the use of technology to further some people’s ill intentions is growing in awareness. The BBC reports that ‘The Child Exploitation and Online Protection Centre (CEOP) says it has seen a “notable increase” in still and moving images captured on webcams.’ Basically, paedophiles or those with inappropriate and sexual intentions towards children are using cameras to SEE our children and coax them into compliance towards their quite frankly, sick fantasies.

Its hard to imagine how someone could have these kinds of feelings and intentions towards a child. The use of webcams and internet/video phone technology means that this is a real issue for us as parents. CEOP reports via the BBC that “These can be self-taken as a result of online grooming, for example, inciting a child to commit a sexual act and then using video capture software to record the video streams for later viewing and trading and/or use as blackmail to ensure further compliance by the child. Similarly, there is also a marked trend of the use of webcam streaming chat sites, enabling offenders to interact either through instant messages and/or webcam to share previously captured footage or live-time images of abuse of children in their care.”

These people are hard to spot. They market themselves in completely innocent chat rooms and sites, hiding their identity and appearing as if all is normal and ok. Often their method of approaching a child and befriending them can be complex and lengthy, hiding behind a disguise of being the same age or some other such persona.

Obviously to ANY adult, any parent, this is a real concern. As Muslim parents, we need to be especially aware – I hate to say it, but these predatory characters even exist within our own communities, both online and in face-to-face contact. Whilst discussion around this is increasing in the mainstream media, I see a conspicuous absence of it within Muslim media or circles. Why? Are we not affected? Or do we want to pretend we are not?

Mosques, madrassas and even some Muslim chat forums have unfortunately been shown to be places where these types of people COULD also be – within an environment that most of us would assume is populated only by safe, pious and moral adults. Places where our children should be safe, brought together by people who have love only for Allah s.w.t. and his Deen. Unfortunately this is not always so and it isn’t just happening in “immoral” Westernised, Non-Muslim societies and countries – it is rife in Muslim countries also. There is a woeful lack of accurate figures since the crux of this matter is that it often goes unreported, covered up and therefore unaddressed and ignorant.

Islam puts children’s rights as paramount and the repelling of evil with good is a fundamental ( though oft forgotten) aspect of our faith. As Muslim parents should you have any concerns about the contact your child has with someone, you should in the first instance put a stop to that contact, even if you are only suspicious. This is our duty – to protect those who cannot protect themselves and to enjoin good and forbid evil.

“Oh ye who believe! Save yourselves and your families from a Fire whose fuel is Men and Stones.” (Qur’an 66:6)

The Messenger of Allah (pbuh) said: “Every one of your (people) is a shepherd. And every one is responsible for whatever falls under his responsibility. A man is like a shepherd of his own family, and he is responsible for them.” (Bukhari and Muslim.)

As Muslims in our communities, we can often worry far too much about honour and “what people will say” and hence be reluctant to cause a stir or speak out about something when we should do so. For some Muslims who follow their culture perhaps too closely, the honour of a woman in particular is given way too much emphasis to the extent that a woman who has been ‘dis-honoured’, (such as suffering rape or abuse) may find herself ostracized from the community despite being a victim to another’s bad hands. Unbelievably sometimes the one who is at fault has their sins and crimes hushed-up and a blind eye is turned for the sake of keeping something within the community and denying that we, just like other groups of people, suffer from crime, sin and abhorrent actions.

This approach to how some of us have come to deal with issues in our circles, also affects children – those who do suffer abuse at the hands of adults can find that they have a stigma attached to them which becomes an unjust burden as they grow up. In all cases, it has to stop. Islam commands justice – Allah commands justice. So we need to make sure the victims in our community are given the adequate and appropriate rehabilitation, we need to ensure that the perpetrators are not able to hide behind a veil of ‘piety’ or cultural taboo and we need to raise awareness and stop being scared of talking about these issues. We may not like it, but we are affected too.

As for children – their rights are paramount in Islam and we have duty to protect them more than any other:

The Messenger of Allah (pbuh) was informed by one of his companions, al N’uman bin Bashir, who said: “Oh Prophet of Allah! I have granted a servant to one of my children (asking him to testify for that gift).” But Muhammed (pbuh) asked him: “Did you grant the same to each and every child of yours?” When the Messenger of Allah (pbuh) was informed negatively about that, he said: “Fear Allah, the Almighty, and be fair and just to all your children. Seek the testimony of another person, other than me. I will not testify to an act of injustice.” (Bukhari and Muslim)

You who believe! Be upholders of justice, bearing witness for Allah alone, even against yourselves or your parents and relatives. Whether they are rich or poor, Allah is well able to look after them. Do not follow your own desires and deviate from the truth. If you twist or turn away, Allah is aware of what you do. (Qur’an 4:135)

Allah commands justice and doing good and giving to relatives. And He forbids indecency and doing wrong and tyranny. He warns you so that hopefully you will pay heed. (Qur’an 16:90)

As adults, we need to guard our children and be aware of the dangers some people can pose to them, both online and in our community. That means we need to take some practical steps towards our childcare and not naively assume that because someone is Muslim or because the school or group we send our child to is Islamic, means that we should cut corners and assume that everything is fine. For instance we should check for references for those who care for our children (even if you met them in the mosque, male or female, you need to check them out for childcare and child protection experience); the madrassa or Quran school we send them to at the weekend – who is leading the class? What are their references? With both of these parties, whereby you leave your child in their care, if they are professional and sincere, they should be able to provide legitimate background checks, including a Criminal Records Check (called a CRB or ISA check in the UK). If they can’t or even refuse (don’t be fobbed off by ‘fisabilillah excuses’ ) then you should seriously consider sending your child elsewhere.

Likewise for the internet, you need to check what your child is doing online. Most people are unaware that you need to be at least 13 years old to have a Facebook account and that under-18s should seek permission of their parents. MSN Messenger, MySpace and any other site with a chat or private messaging facility – who are they talking to? Do they know? How much time do they spend online? Is your child able to understand that there are some people on the internet who are not very nice? Would they feel able to tell you? Sit them down, talk to them – they are children but they need to know, as they are living in an increasingly accessible adult world. We don’t need to wrap our children in a cocoon of cotton wool, we must allow them to grow and develop lest we hinder their ability to mature, but we need to safeguard them where appropriate and in doing so, make ourselves aware.

We need to wake up – these issues are not something we are immune from, they are things happening right here in our society. Let’s not let Islam be something that those with bad intentions can hide behind, nor let ourselves be ignorant to what is around us in our desire to present the face of the Muslim community.

Say: ‘My Lord has commanded justice. Stand and face Him in every mosque and call on
Him, making your religion sincerely His. As He originated you, so you will return.’ (Qur’an
7:29)

UPDATE: Babys name may actually be Misoh, the news articles reported both names so I don’t know which was the correct name.

UPDATE 2 April 25th: The lawyer for Narjes (the mother who is an Iranian immigrant to the US) has made a statement discussing her mental health history and how it may come into play in the coming trial. In the article he mentions that she has had several hospital stays for mental illness including one after the birth of her 3 year old child and is diagnosed with Bi-Polar Disorder which puts her at higher risk for Postpartum Psychosis. They mentioned that she had not been able to bond well with baby Masih (not uncommon even among women who don’t suffer from mental illness) and she had recently expressed fear that someone with negative energy might harm her children. He described her as “very soft and very quiet”.

Parnham [the lawyer in this case and the case of Andrea Yates who drowned her children while suffering from Postpartum depression/psychosis] and Russell Yates, the father of the five children drowned by his former wife, both said they hope the community keeps an open mind about mental health and women who suffer from postpartum depression.

Early public discourse after Andrea Yates’ arrest didn’t include much discussion about the severe effects of mental illness.

“The awareness of postpartum illness has improved. I don’t think it’s such a taboo,” Russell Yates said in a telephone interview Saturday. “I think Andrea’s case helped to raise awareness of postpartum illness, and I think on the whole we have a better understanding. … It’s hard to blame someone for becoming ill.”

Yesterday I posted an Amber Alert link on my facebook profile for a baby in Houston, Texas, this is how the story read:

An Amber Alert has been issued for a two-month-old boy who police say was taken from his stroller in southwest Houston.

Masih Gulabbaksh was abducted at approximately 5:30 p.m. Wednesday by a male in the 8000 block of Woodway Drive.

The story goes on to describe a suspect.

The emotions that go along with hearing of the abduction of a child are the same regardless of what community the child is from, you always feel like it’s your own child that’s missing, but this hit slightly closer to home because he was also the child of a Muslim family.

The devastating truth

Trigger warning: Death of a child and PPD mentioned.

The devastating truth came this morning when I got up. Baby was found, dead. Not only that, his own mother had apparently buried him alive.

According to the family she was being treated for mental illness, apparently she had suffered from depression for some time and was possibly experiencing Post Partum Depression or Psychosis after her precious son was born, he was only 2 months old. She’s undergoing mental evaluation at the moment.

Postpartum Depression

Occurs in anywhere from 5-25% of women. Postpartum.net says 1 in 8 women will deal with PPD. But how many of us are aware of it? Especially in the Muslim Community, what do we know about PPD and what do we do to support new mothers who may be having a hard time?

Can’t think of anything? Me neither.

According to Wikipedia, these are the symptoms:

Symptoms of PPD can occur anytime in the first year postpartum^[5] and include, but are not limited to, the following:

• Sadness^[5]
• Hopelessness^[5]
• Low self-esteem^[5]
• Guilt^[5]
• A feeling of being overwhelmed
• Sleep and eating disturbances^[5]
• Inability to be comforted^[5]
• Exhaustion^[5]
• Emptiness^[5]
• Anhedonia^[5]
• Social withdrawal^[5]
• Low or no energy^[5]
• Becoming easily frustrated^[5]
• Feeling inadequate in taking care of the baby^[5]
• Impaired speech and writing
• Spells of anger towards others
• Increased anxiety or panic attacks
• Decreased sex drive

Then there is Postpartum Psychosis, this is actually different from PPD and includes a complete break with reality, psychotic episodes.

If you’re a mother, you’ve been there.

You know those nights where the baby won’t sleep, won’t stop crying, won’t feed (or your milk supply is low so baby is hungry). Yeah, you know those nights, they don’t call it Baby Bootcamp for nothing. Imagine that you suffer from depression, or you are experiencing postpartum depression (scroll up and read the symptoms again, and imagine yourself experiencing that on one of these nights, or the morning after). I’m not excusing or explaining away what happened yesterday to that precious little boy, many of us go through very trying times with our kids and we don’t harm them, we haven’t quite been there, but we know how hard it can be with a small baby.

What’s happened is a horror unimaginable, baby Masih’s face will not leave my thoughts for even a moment for the next couple of days, it will haunt me and I will wonder how on earth a mother can do that to that precious, helpless little baby, I’ll wish that she would have just left the baby with someone else, given him away, something other than this! I’m angry at her, how dare she.

But I’ll hurt for her too. There’s a human being behind this story, not a monster but a woman, a mother. What pushed her to this? What was she experiencing when this happened? What was going on before this happened? What made her think there was no other way?

How do we prevent this from happening again in our community?

I wish I had the answer. Awareness and Support are two things we need to work on as a community for sure and I do believe that awareness is one of the key components of prevention.

Reach out to new mothers around you and offer any support you can, even if you just go for a cup of tea and hold the baby while she sleeps or showers, change a diaper/nappy, bring her a meal, babysit her other kids for her or help them with homework, help her clean the house, get other sisters to help out too. A beautiful sister I know had a baby a few months ago, another beautiful sister filled her freezer with pre-cooked meals she’d made herself. Do something like that!

One of the most important pieces of advice I was given before I had my first child, was don’t be afraid to ask for help. ASK! If you need help, ask. Don’t put on a happy, coping face if you are not coping. If you are thinking things that worry you, call your Dr, if you feel you might be losing control, call 911 (or the emergency number in your country) or go to the hospital. Remember, you are not alone, other sisters have been there and made it through.

Our sisterhood can only be strengthened by being there for each other as much as we can at the aqiqah celebration AND on the difficult days and nights. Sisters have mentioned going to aqiqahs and seeing the new mother up serving everyone and making sure everyone has food and is comfortable etc. this needs to stop, it’s a time for the mother to rest and be celebrated, and the left over food? (that isn’t being given away for sadaqa) Leave it for her, she needs the break from cooking so she can focus on her new baby and herself.

Whatever made sister Narjes Modarresi commit this horrific act, she at least deserves our prayers, her 3 year old child who is really going to suffer through this, needs our prayers and her husband Amir Golabbakhsh and family need our prayers, May Allah give them sabr (patience) and help them through this unthinkable event amin.

Mothers are special and babies are precious, take care of each other sisters.

If you think you have PPD or know someone who you think is at risk, please call: 1-800-994-4PDD or go to their website.

Just wanted to post this hadith for Earth Day, it reminds us about the gentle approach we should have to the environment and world around us. Have you seen Avatar? You know how they live in harmony with nature rather than fighting it? Yeah, that’s how it should be!

The Prophet (peace be upon him) used to stand next to a tree on Fridays. Someone (from the Ansaar) said: “O Messenger of Allaah, should we make you a pulpit?” He said, “If you wish.” So they made a pulpit for him, and when the next Friday came, he was shown to the pulpit. The tree cried like a small child, then …the Prophet came down and hugged the crying tree until it calmed down.” The Narrator (Jaabir) said: “It was crying because of the dhikr (remembrance of Allaah) that it used to hear.” (Bukhaari, 3319)

So as someone said on facebook today: Hug a tree, it’s sunnah!

While you’re at it, read what Yvonne had to say on My Halal Kitchen.

What do you do to help the environment, or limit your personal affect on it?

Is that normal?

A mothers natural state is guilt. Guilt that you couldn’t breastfeed exclusively or that you took pain medication at birth. Guilt that you didn’t wash those socks before you put them on your toddler. Guilt that your child had too much candy 3 days out of the last week. Guilt that you are not perfect and will inevitably damage your pure, perfect child.

Then there’s the Second Guessing. You think such and such might be best, then you wonder. You think you are noticing a behavior that is abnormal for a child this age, and then you wonder. Is that normal? Does the neighbors kid do that? All kids eat strange things at some point. All kids throw tantrums. All kids mimic Movies and imagine they are a puppy sometimes. All kids are afraid of loud noises… but not like this, this is different.

Giving it time.

If you notice something unusual about your childs behavior (that is not alarming enough to warrant immediate evaluation) it’s wise to give it time. Kids go through some strange things as they grow and develop, they often grow out of abnormal behaviors. That’s the hard thing about this sort of problem, especially when you are aware of it early on, you often just have to wait it out.

That doesn’t mean you shouldn’t be proactive, don’t fixate on the issue, but offer natural alternatives. If the child is sensitive to temperature, allow them to wear less or more clothes as they are comfortable, allow them to choose their clothing, offer them a cool washcloth in summer if they get hot easily, offer some mittens or gloves when out if they are sensitive to cold. If the child is sensitive to loud noise, get down on their level and help them with their fear/anxiety, teach them to take deep breaths, allow them to make noise to comfort themselves, offer them a hat to cover their ears or even headphones. If the child has a need to chew, offer different textured things that are safe to chew (we use straws a lot as well as a clean washcloth and different textured teething toys – yes, even at almost 5)

Use this time to talk to others about the behavior you’ve noticed. Teachers, childcare providers, friends and family who know the child and others who have children with similar behavior. Do some reading, but again, don’t fixate and don’t allow your fears or concerns or even a diagnosis to change the way you see or behave towards your child, so they might be a little different, so you might have to treat them a little more delicately (or with more pressure even) that’s ok, the important thing is to be aware and conscious and treat them as you would any other child as far as possible.

Of course the severity of Autism Spectrum Disorders dictates exactly the approach you need to take and you have to assess that as a parent and with the childs Dr, my experience and thus advice, is on the higher functioning end of the spectrum, some of this article may not apply to the more severely affected.

When to do something.

What we went through:

Maybe it’s just a phase. She’s 3, 3 year olds are just weird by nature. We’ll give it time. I’ll offer safe alternatives. She likes to chew? I’ll give her miswak! (a type of stick used in the middle east for cleaning teeth)

Dr says a phase lasts max 6 months, after that, it’s more than a phase. She’s not growing out of this, it’s been at least 18 months since the normal age for this behavior. The miswak isn’t working anymore. A 3 year old should know better than to put glass in their mouth.

We need some outside help.

Support and Lack thereof.

Having a strong support system of people whose opinions I trust was key to getting the help needed for our daughter. I was able to bounce ideas of my sister who has a degree in early childhood development and a strong interest in Gifted children and children on the spectrum. She was able to pass on what I had told her to Special Education teachers she worked with who were able to give their take on the situation. I also had other friends and family who gave me wonderful advice and sincerity, some simply gave me support “you’re doing the right thing!” which is invaluable on it’s own.

Some family found it hard to accept the conclusions we were coming to, that too I have to respect, and even appreciate, it helps keep things in perspective, self doubt is not helpful, but questioning yourself sometimes can be. Still, it’s not easy to have to fight for the support you need from those closest to you.

Unhelpful Dr’s.

It was our family Dr who initially validated my concerns, having seen the advanced language and art skills our daughter exhibited in conjunction with the sensory sensitivities I described and the lack of eye contact she noticed as well as the anxiety from Madam that we dealt with at every Drs appointment. The Dr brought in their general psychologist to talk to us about the possible cause and significance of the things I described. I had an appointment with the 2 of them, on my own, without my daughter, and was told that I really just needed to be a firmer parent and that there was no need for further evaluation.

I was almost certainly looked at as “one of those mothers” when I mentioned strong family tendency to have spectrum traits and my family and I concluding I am almost certainly Aspergers. I was later given some important advice, keep that part to myself, at least at first.

I was given the “you can read too much, you know” line that I despise so much, and I despised it because I knew the reading had happened because of the concerns and not vice versa, no, I had not gone down that road this time.

I moved on after that, we’d do it on our own for a while, Ok it’s been over a year, but she’s small, there’s still plenty of time to outgrow these things.

Then she tried to eat some glass and chewed through a live electrical cord.

Enough was enough and I contacted the Dr to get the referral, even though the Dr wasn’t a great help in taking my concerns seriously, she lent me her ear and opinion several times and always left the decision for moving on with the evaluation or not, completely up to me. Not a bad Dr, just one who hadn’t dealt with a child like this before.

A Breakthrough.

Childrens Hospital, lovely Dr. I was listened to, heard out, validated, respected as not an but the authority on my child and not only told that I was right all along, but that I should trust my intuition because I was spot on. Most importantly, my child got to know the Dr and spend time alone with the Dr, this wasn’t all based on what I had to say.

It’s not a good feeling to hear that your child has a neurological disorder, it’s not a good thing to have fears validated. It is in the same breath, wonderful to have your intuition as a mother validated, your opinion as a mother respected and for a Dr to speak to you as a peer in your childs care.

This sort of Dr experience is unfortunately rare. It can take years and much heartache to find a Dr who is willing to work with you that way and even willing to entertain a change of opinion when you disagree with something. It is unfortunately rare to be respected and heard. We may not be called ‘refrigerator mothers’ anymore, but there is still a lot of blame defaulted onto the mothers, we are still, in many cases, guilty until proven otherwise.

Congratulations, it’s PDD-NOS!

Pervasive Developmental Disorder – Not otherwise specified. In our case more than likely Aspergers but because of age, that particular label isn’t used by this particular Dr. all Dr’s or clinics approach the issue of age slightly differently.

PDD is another name for the Autism Spectrum, it’s an umbrella term for a collection of developmental disorders including Autism and Aspergers.

So now we can move on, now we can share ideas about how to help this little lady through her anxiety, sensory sensitivities and other difficulties. Now we can provide her with resources to help her better understand the world around her and make the most of the immense gifts she was given, now we can better understand her ourselves and react to her with more empathy and more productive responses to what she is experiencing.

Learn more about PDD on Wikipedia.

PDD on Childbrain.com

PDD on the Autism Society of America website.

Autism Speaks’ page on PDD-NOS

Understanding and Awareness.

Remember that the purpose of getting a diagnosis is to get help and you only need help if the behavior is affecting the child’s or family’s quality of life. If the child is quirky but there are no developmental issues, safety concerns or detrimental affects for the child or family, you may not need intervention.

What I did and what I have told other families with concerns to do, is start making a list of the behaviors that concern me (eg. chewing, sensitivity to sound), the behaviors I find unusual or significant but not necessarily a concern (eg. lining up toys, scripted talking) and lastly the gifts and talents (eg. incredibly advanced in language and art) as these are positive areas we want to build on and work with but not areas of concern. Keep an eye on the behavior, update the list every month or 2, and bring your concerns to the Dr if you feel it’s necessary.

If you don’t get the response you want, find another Dr who will listen. This doesn’t mean find one until they tell you what you want to hear, it means find one who will listen and treat you as a peer.

Autism and Aspergers are not fashion statements. They may not always be visible, but they are very real, often painfully so.

Help us raise awareness about the Autism Spectrum by wearing Blue on April 2nd, and becoming a fan of Blue Hijab Day.

Wear a blue hijab (or another kind of blue scarf or hat if you don’t wear hijab) on World Autism Awareness day: Friday, April 2nd. Print this tag and pin it to your hijab to let people know why you’re wearing blue.

Download the english flier or the Arabic flier and distribute it at your Masjid (Mosque), School, Club, Work etc. put it on a noticeboard, in a sisters area, hand it out to friends, show it to family, write about it on your blog, facebook, website or in your Newspaper or Magazine. Wherever and however you can, let’s spread awareness about Autism.

There are probably millions of us with children on the spectrum, or who are on the spectrum ourselves, Autism affects about 67 million people worldwide! And there is not enough conversation about the Autistic Spectrum in our community. Let’s start that conversation the Jummah (Friday) of April 2nd 2010.

Read more about WAAD here http://www.worldautismawarenessday.org/ as well as information about Autism and the Autistic Spectrum in several languages including Arabic.

Click on the preview image of the tag below to print it out and pin it to your hijab on Blue Hijab Day to let people know why you’re wearing blue. Having trouble with the PDF? Download and Print the JPG version of the tag here.

Click on the preview image of our flier below to download/print it and share it! Having trouble with the PDF? Download and Print the JPG version of the flier here.

Click on the preview image of our Arabic flier below to download it, print it and share it! Having trouble with the PDF? Download and Print the JPG version of the flier here.

UN World Water Day website. This years theme is Water Quality.

I highly recommend the documentary ‘Blue Gold‘ to learn about the Politics of water and how it affects you.

Water IS life! A person can live weeks without food, but only days without water. 1.1 billion people lack access to an improved water supply – approximately one in six people on earth.
Water Facts

Links:
BBC Pictures (2009)
Wikipedia Article