you have a diagnosis!

1. take a deep breath. 
2. pick a goal, for him and you. 
3. pick a goal, for school or therapy 
4. pick a goal for daily living. 
5. pick a goal for social skills. 
6. slow down and take notes (mental or paper) on how he is in each of these 5 goals. what are his obstacles, and why. 
7. isolate the sensory and motor issues from the typical child developmental issues. 
8. AIM << go there and find a solution, you can learn any individualized approach in about 5 minutes, and some trial and error with your child. 
9. write out your goals, what you know he does need support in, any tools, resources, and services you want access to.. bring this with you to the doctor. 
10. don't be afraid to ask about money, most publicly funded services are not beneficial enough to warrant the side effects they may cause to your family or your child's life. 
11. look into cognitive behavioural therapy, and mindful meditation practices. 
12. evaluate his overall health and consult the best nutritionist you can find.

I have been following this strategy since my oldest was 16 months old. The greatest advice I ever had was from our first speech language pathologist, Lisa. She was brand new to the world of autism, having only taken her first few extra courses and workshops for her specific trade and interacting with children on the spectrum.

These twelve principles fall in line with her advice. My children have yet to receive intensive interventions, strict ABA or anything outside of myself. 'D' did attend public school in a contained classroom environment segregating the autistic children from the neurotypical children. This proved to be in his case, detrimental, when I decided to homeschool we had to re-instill all of his social skills, daily living skills, self-regulatory skills, and self-awareness development that he had prior to school. 

Here's how I try to keep track of it all.

1) I avoid tracking sheets and in-their-face clinical practices.
2) block out everything but your child in the moment, following floortime and DIR practices here, weighing his cognitive responses to my interruptions, and adaptations of routines (ie.. doing for him, or offering help, and letting him lead me into how or what he wanted to do)
3) breathe in those moments of togetherness, and keep them all. Find them anywhere and everywhere you can, from bedtime routines to grocery shopping. If you can be close to his apparent thoughts, you can learn what his sensory triggers are before something happens.
4) measure by frequency and stress levels.. sure taking mental notes isn't the most efficient way of doing things, but truly most services only encourage you to focus on one goal at a time, no harm in monitoring your others along the way.. in my opinion.
5) combine your goals with any therapists or specialists' goals, and insist they listen to yours and include you in their decision making.
6) mimic the desired outcome in other ways. Ever heard of play therapy? I like to take a serious challenge and use play to discover whether they have the dexterity, strength, focus, and self-awareness to complete the task, if they do, I find a developmentally non-threatening play thing to encourage the action, and through pairing verbal cues, visuals, or even similarly-tactile transition tools, they develop the skills independently, leaving you to focus on how to achieve the goals set out by the specialists who are supporting YOU.
7) keep track of the tools you are using, the developmental ages associated with them, and follow the criteria for developmental assessments used by your local family services young children departments. You will quickly find you have the knowledge of your child's ability, demonstrate intuitive reactions to your child's needs, and have labels you can share with your team that is understandable by most if not all.
8) last but not least, I monitor stims.. I really distress when they would normally be removed from their activity by others, because it is usually a seemingly traumatic and triggering scene to the child.. through trial and error (mostly indirectly if possible in this case) sort out what the possible goals are of the activity, and how you can expand on it with/for them. With this it does help to have aspergers, or a strong understanding of the child, or of stimming in general. For the sake of relieving social awkwardness, I do strongly encourage to find near-to or popular alternatives to their stimming when in social scenarios. What I mean is this, when indirectly encouraging the stimming behaviour, focus on functionality. ALWAYS remember you want the play to at least seem functional to others. I follow this rule to this day, and it works. On good days my kids appear high functioning autism, and most stims have been masked with socially appropriate alternatives, wherein they feel the freedom and confidence to interact with neurotypical individuals, or strangers.. without the loss of what they find to be 'centering'. 
9) always learn what others see and feel about your child's behaviour, accept comparisons, and bear with the disappointments and bad days in between.. you will find support in even the most unlikely of places, by being honest and hard-working in this. 
10) when life gets in the way take a break, because if these things work for you, and your child has had plenty of 'stimming' time, it is very likely he will bounce back two-fold and show you what he has taught himself when you were mentally 'away'.

So your child is being assessed for autism

be afraid, very afraid!

As soon as you start down this road, you will be faced with a series of nightmares. Will your child be ridiculed in school? how will this impact his relationships with peers and siblings? Will your life ever be the same again? All of the rules you had dreamed of, or live by, are crumbling! We need help to build these 4 walls back up again. Your child needs therapy. Your child needs intensive intervention. You need to be prepared to lose yourself to the machine of forms, charts, checklists, data collection and paperwork.

If your child is already sick, you may begin to wonder what more this will add to his and your plates. What IS autism?! Why us?! The series of concerned yet hollow faces you will see over the years begin to haunt you already. In public you may be doing alright with social perceptions if your child is young, but as they get older..? When a tantrum over a toy is no longer cute..? what will you do..? How much can ABA really change this..?

In 2013, Canadian statistics are at 1 in 88 people are diagnosed with autism. If you do not have a business-inclined mentality, then please take a moment to breathe that in, and abruptly make a horse sound and spit it out again. It means nothing for you. Is your child part of that number? who knows. Where did all these kids come from? well, either its something in the water, food, or lifestyle; or maybe its just a new craze. What does all of this mean for YOU? How other children are doing in school will be very different than yours, I assure you. What services other children receive, and how effective they are, is purely subjective and circumstantial. What are YOUR goals? How does autism interfere with those? What can you do to bring the two together? Because you see, I don't think autism interrupts our hopes or dreams, I think how we learn to deal with differences, this is what changes our reality.

The scariest part of your child being diagnosed with autism, is that you are slowly and methodically given the option to let your child be segregated from neurotypical peers, or to pull the plug on your own dependency on the social construct that is the popular culture.

Personally, henceforth, you will read of how I choose to pursue integration, not in school, not in extracurricular activities, but true integration. If we are at 1 in 88 individuals on the autism spectrum, then a few years ago we were at 1 in 100, a few years before, 1 in a few hundred, there has always been autism, and aspergers, but never before has there been such a rush for fundraising to prove a cure, therapy, or intervention like there is now. Be wary of any sponsored ads or specialists.

Right now, my greatest fear is really whether my child likes dinner tonight or not, what's yours?

Its Tough isn't it?!

No it isn't.

Believing in what other parents and individuals expect of you is tough.

My children were diagnosed with autism because of developmental delays, severely atypical communication methodology, and unharnessed sensory stimulation issues. Had they not displayed these characteristics of a neurological disposition to trauma management, none would be the wiser.

I make mistakes, daily, because when I take a moment to sit back and reflect on the events of the day, I come out with how I could have done better, what caused me to react this way, what caused their behaviours to be so wrong. I love to calm my mind when on the computer, calm my body when outdoors, and calm my spirit when cleaning. I entertain my passions in the kitchen, in writing or with video games, experience new parts of childhood when invited by my children to play, and design a home that meets the needs and accommodates the intricacies of two quirky little boys.

My youngest is finding comfort and commonality through verbalization, turn-taking, and realizing common interests. I have come to accept his skill at nonverbal communication, and with this it has become almost a daily improvement in the sophistication of his expressive strategies. Fewer meltdowns, and when they are there, we have a few ipad apps that supplement expression of emotions. see my other blog for teaching strategies I plan to use to cover this area.

Its tough to be low-income and make sure I have what we need. It's tough to deal with services that are 20-30 years behind the information in the autism teams found in larger cities. Its a struggle to ensure their lives are not entirely disrupted by individuals with limited understanding and their own career-derived communication challenges. Its tough to educate those we go to for support, on the very things we find to be the core to our family's stability. Translucence, legitimacy, understanding, and propriety.

tough being a mother to not one, but two children diagnosed with a disorder to their giftedness? maybe.