This is Not the Way – Reflecting on the Death of Alex Spourdalakis

alex

They show up in my news feed a lot – stories of children and adults with autism who wandered off, bolted, went missing and were found dead in a pond less than a mile from home, or something similar. Or news articles about a special needs child who was abused on his bus or in school by some teacher’s aide, or bullied by a classmate, or killed by a member of his own family when caring for him and helping him manage/overcome the most difficult aspects of his special needs became “too … [Read more...]

Fatherly (Baba-erly) Appreciation

The husband and I celebrated our 14th anniversary last week. We continue to (Alhamdulillah) defy the odds of marriages that break up under the stress of dealing with special needs, and is because of compromises we’ve made, respect and support we give each other, how we own various duties and roles in our lives and because we have tremendous family support. Our family works, in large part, because of him and what he’s given up/taken on/gained/lost/learned/unlearned/adapted/loved/changed … [Read more...]

It’s Not Just About You

Amal sheparding Lil D on the beach

The only thing predictable about autism and Lil D in our house is that it and he are unpredictable. You can say that about life in general. It’s not a unique characteristic owned by autism or my child in particular. And yet, it is unique to us in its manifestation. We met with Lil D’s speech and occupational therapists last week at school at my request to discuss some things we want to change/try with his assistive communication device (his iPad), as well as figuring out a plan to help … [Read more...]

We Keep Planting Seeds of Change

Five K_family

There are two stories to tell, unrelated, yet related to each other. A high and a low. Prayers answered and things gone horribly wrong, all in the span of 48 hours. Autism is a relentless, fickle and surprising master. But there is one greater master. The past two months around my home was a lead up to Memorial Day weekend and the Autism Society of Central Virginia 5k – an annual run/walk that is this organization’s biggest fundraiser. I’ve been involved with this organization for a few … [Read more...]

In Autism Land, Who is the ‘Kismat-Wali’ (One with Good Fate)?

Daanish smiling

There is a phrase in Urdu – kismat-wali – meaning one who has good fate, who is blessed, very much like the word “kismet.”  My mother-in-law called me kismat-wali. She is visiting her daughter these days, who has five children, works full-time and has leads an incredibly busy life. The classic Super Mom – that’s my sister-in-law. After spending some time with her and seeing how much she manages between the kids, her teaching job, cooking and housework, my mother-in-law remarked … [Read more...]

Loved and Loved Back

Daanish and Amal_soccer

The whole family came out for Amal’s soccer game on Saturday morning – Lil D, Hamza, my husband and myself. I can’t remember the last time we all went to one of her games or one of Hamza’s games. All of us. The kids have been playing with the Ansars soccer league for four years now, and many of these kids have been with Amal on teams since they were five and six years old. Playing with the Ansars is one thing I have tried my best not to compromise for Amal, and now Hamza, even when … [Read more...]

Not Today

Hamza pulls his arms inside his t-shirt too, so he can be just like Lil D.

Something is wrong. I can see it; I can feel it in my bones. Lil D is off, and as I go back through things in my head and track the data sheets that I (and his school) maintain, I see an alarming rise in incontinence – the fancy word for pee accidents. Lots and lots of pee accidents.  I just threw out his old mattress, knowing it was beyond cleaning at this point, and got him a new one. And that new one is encased in an allergen-mattress cover with a vinyl cover on top of that, plus double … [Read more...]

Did Autism Speak?

Autism_Awareness_puzzle pieces

Autism Awareness Month, or as many in the autism community like to call it, Autism Action Month, is ending today. For some of us -- we are happy to see it go, as the response to autism and the awareness of what this developmental and neurological disability is nowhere near where it should be. Some in the autism community, including self-advocates with autism, look at the increasing numbers (1-50 school age children have autism spectrum disorder, or ASD, according to the latest reports from … [Read more...]

For the Love of Their Grandchildren

Daanish spinning beads on flag (2)

What would a parent do for their child? Anything. How far do we go for them? As far as it takes. What do we give up? Whatever we need to. What do we change about ourselves? Everything. When you add special needs into the picture, then your ability to go the distance for your child becomes the stuff legends are made of. And, there are no thanks necessary – it’s just what you do. I have quit jobs, stayed up nights on end well beyond the baby and toddler years. I’ve driven thousands of … [Read more...]

When an Autism Awareness Event is Anything But

hockey autism awareness

We’ve hit the middle of April, and while there was a flurry of focus on autism at the start of the month, it still is very much “Autism Awareness Month.” Awareness events sponsored by local and national organizations continue to occur across the United States, but sometimes I wonder how much real “awareness” is actually happening? How many of these events just serve as fundraisers for the organizations sponsoring it? Fundraising is not bad, and of course autism organizations must … [Read more...]