[ellie1326]

So we had our Speech Therapist assessment done this morning, and the speech therapist, after doing all the assessments, has also dx DD2 with Autism and so will fully supports the Autism diagnosis of the Pead. in her report. Bummer.....DD2 3.5yo was assessed in comprehension and understanding as well as speech. Her comprehension and understanding came back as 2.5yo so she is a full year behind. Speech is apparently even worse, more like 2yo, so nearly 1.5years behind. So I guess there is no other way around it now, I have a beautiful, loving and playful Autistic girl that blessess us everyday in the most beautiful way. Let the whirlpool of therapies begin.....

Well I guess it is just as well that I got most of stuff organised for DD1 now, lucky I have got onto that early, cause otherwise I would probably started to panic big time, I still panic, but it's not big time....lol. God please grant me wisdom to know what to do.

[Fredi]

Thanks gumbette and twistedkites DS's cheek does amuse us sometimes and now that he can talk he almost never shuts up. Just recently we were at a public toilet and a lady walked out of a cubicle then headed straight to the exit. DS yelled out "don't forget to wash your hands!". She must have heard us as two others did and chuckled, but she didn't turn back lol It wasn't long ago though that DS's general defiant bossy behaviour was a real concern for us. I remember querying ODD as he was that hard to manage and noncompliant. His increase in language has helped him communicate so now the defiance comes across as negotiation or assertiveness. We may just have another lawyer in the family lol

BMJ - that's so awesome you had such great juniors! They're like gold aren't they, hard to find and you just want to hold onto them when you do find them.

Ellie - I hope you're holding up ok. It's never easy to hear about your beautiful little one. It's probably a bit of info overload right now but try not to panic and feel overwhelmed by it all, therapy and EI will fall into place and you'll know what to do in time.

[jdmum1]

Just quickly popping in hope you are all doing well.

BEHAVIOUR - just wondering if you can tell me different strategies that you have used, what are some things i can try. We are having big difficulties with my son and just trying different things. and seeing what works. have u used timeout/calm down time? certain spots to sit in your house while they are in that moment? any tips?

[Back2Insanity]

Hi everyone. I have a 27 month old who is delayed in quite a few areas. We had our first peditrician appointment in Dec and next one is in 2 weeks. He wants to see if DS has improved in the last few months of speech therapy and occupational therapy before testing to see if he is on the spectrum. DS has a grand total of 4 words at 27 months and they arent clear. He also is behind in his development milestones and has sensory issues. We have been hoping that it was a hearing problem but that has been ruled out recently with 2 hearing tests.
For those who arent with their kids father, how do your kids cope with going between 2 houses? My son freaks out and has complete meltdown if I move the coffee table. I dont know how hes going to go when he has to travel 1400kms to visit his father.

[Marina_D]

Hi Everyone,

I havnt been on here for a while, as appointments with dev paed, speechie and info sessions at Lizzard have made my time very scarce.

Firstly, i was so impressed by Lizzard that during the info session i almost started to cry. I am really hoping a spot comes available for my DS soon, as I know they tenmd to see the toddlers in the mornings hoping one comes up soon. I now know that the 30mins weekly speechie sessions are no way enough for DS. So now i feel im not doing enough for him!!

I must say the assessment the dev paed did (shes lovely based in Randwick) but wasnt as thorough as i expected and didnt really test him in all areas like Aspect did. We go back this week for her feedback. I know DS didnt perform as well as he did for the Aspect psychologist and i left feeling drained. We also did the blood test for genetic testing as i want to know the cause of the delays and whether or not there is something or whether it was due to his cancer early on.

In amongst all this DH is NOT coping. We have been on the edge for the last week and it blew up last night. I cant handle his stresses on top of my own and what we have to do for DS.... he apologised this morning and said he felt he needed to speak to someone as hes going through alot. DS started banging the back of his head when sitting on the coach and he thought "oh the autism is getting worse" and thats when it all started last night. This morning i cant bear to see him or speak to him. I feel quite alone now, like the entire dx of DS is on my shoulders....

lastly, i know there are a few Lizzard families here. Id like to hear from anyone who has attended and how far their children have come...need some upfliting stories...

[ellie1326]

Oh Marina I can't help, but I couldn't go by and not send you the hug. Hubbies are so difficult sometimes, for some reason they know just how to break our hearts even further. Hope the fight blows over and you will feel a bit more positive soon.

Backtoinsanity-welcome. I really hope you get some concrete answers soon.

Jdmum-sorry no strategies here, still trying to figure that one out myself, would be interesting to read what others do.

Bubba-Ds sounds so cute

Everyone else, huge hello, hope you are having a great monday and will have a wonderful week.

I am going to check out a playgroup for Autistic Kids tomorrow, so am a bit excited about that, hopefully it is good. Otherwise not much happening here, just riding it all out atm.

[baddmammajamma]

ellie: Glad you are getting some answers, but I appreciate that you have a lot on your plate. Sending you some cyber energy!

back2insanity: Welcome! This is a very supportive group. I really hope that your get some meaningful guidance during your next paed appointment. Is the paed you're seeing very familiar with ASD? Some are fantastic & appreciate the nuances and others are not as well versed. Hope yours falls in the former category!

lastly, i know there are a few Lizzard families here. Id like to hear from anyone who has attended and how far their children have come...need some upfliting stories...

Our uplifting story is below. Some of you have seen this post already -- I wrote it last April (2011) on Autism Awareness Day, about 2 months into my daughter's first year of school. I should preface it by saying that my daughter is high functioning and responded beautifully to ABA. Still, when I look back at where we started when we commenced with Lizard, I cannot believe how far she has come.

I'm thrilled to report that she continues to go from strength to strength at school (but with a few bumps to keep life interesting!) FYI: We still have shadows in the classroom -- about 5 hours/week of coverage at her most challenging times.

Dear Friends:

April is Autism Awareness Month, and Saturday, April 2nd is World Autism Awareness Day. This year in our household, it wil be a time of reflection and celebration. It hasn't always been that way.

When J was 28 months old, we received what felt like crushing news at the time: she was at high risk for having an autism spectrum disorder. All the little unusual behaviors and interests -- things we chalked up to "quirkiness" when she was a toddler -- had now become signs that we could not ignore. She was formally diagnosed at age three. I shed a lot of tears worrying about what the future might hold for my little girl. I could have used some stories of hope back then. So here is ours:

When we first relocated to Sydney from Singapore in the Aussie winter of 2008 – driven by J's needs – she was entering 3-year-old kinder/preschool. She wasn’t interested in engaging with the other children, she had an expressive language delay, serious fine motor and sensory issues, restricted play, was unable (or unwilling) to eat solid foods, and had some serious obsessions and fixations (e.g. love affair with a magnetic letter Q) that made it difficult to get through the day. She wouldn't sing "Itsy Bitsy Spider" or any song with the rest of the class -- that would spark tantrums -- but she COULD read aloud a passage from her favorite book: a biography on Joseph Stalin.

A "big victory" for J was when she would sit for 10 or 15 seconds on the mat during group time at preschool, with her shadow (aide) measuring each tick of the stop watch. Back then, it was hard to imagine a day when J might be able to interact with kids her own age or survive in a school setting. Almost every social event -- playground time at preschool, a playdate, or a birthday party -- served as an opportunity to emphasize how much she was struggling relative to her peers. There were some days when all I wished for was a daughter who danced around in fairy wings like all of the other little girls her age -- and then of course I felt enormous guilt for wanting to change anything about her.

As my husband and I came to terms with J's diagnosis, it became increasingly clear that our focus should not be about chasing some elusive "cure" or making her "normal" or imposing our definition of happiness on her, but rather, helping her develop some core skills that would allow her to better navigate the world on her own terms. To that end, J spent the 2+ years leading up to primary school doing an intense form of early intervention that included daily behavioral therapy, weekly social skills group, a year of weekly school readiness classes,and occupational therapy.

At a time when most of her peers were having fun just being little kids, J was working so hard at building a tool kit that most kids develop naturally. She had intense early intervention during that period, including daily sessions during the week, social skills group on Saturday, and sometimes even evening sessions, along with heaps of reinforcement at home. It has been an exhausting, expensive, and all encompassing effort for our entire family, filled with a lot of tears and headbanging -- hers and ours.

Today we are celebrating because all of that hard work is coming together in the best possible way: J is wrapping up a wonderful first term at a mainstream school. And while I know that we might face many challenges in the days and years ahead, the fact that this milestone period has gone so beautifully and so smoothly makes me cry with JOY.

Today I have a daughter who is excited to go to school in the morning and is engaged and able to keep her behavior in check throughout the day. She has a great group of friends, including a "bestie." Her classmates sense that it takes her a little longer to pick up on social cues, but they appreciate her wicked sense of humor (J is a master teller of fart and poop jokes), terrific creative writing skills, and ability to craft cool and unusual games on the playground. Her shadows are quickly working themselves out of a job, providing only a few hours of coverage each week to ensure that she using her full arsenal of skills.

J's speech delay is long gone (though we're still working on mastering the give and take of social dialogues), the sensory issues are pretty mild (we just have to avoid automatic hand dryers in public bathrooms these days), and she can chow down a leg of lamb like Henry the VIII! She still fixates on things from time to time, but mercifully, Soviet dictators are out and a more age- appropriate interest -- dinosaurs -- are back in. We are continuing to work with a psychologist to help with social skills and an OT for fine motor, the latter so that J can fulfill her dream of becoming great saxophone player, just like Lisa Simpson. Make no mistake, J is still wired in a way that makes her stand out from other kids -- but as she reminds me on a regular basis, "I'm very cool, Mom." I love how much she loves her funky self.

It has taken the proverbial village to get her to this important stage: dedicated therapists, our friends, our family, J's preschool, and a primary school that so actively fosters inclusion. I am grateful that we have been able to access such wonderful early intervention support for her and that she has responded so well to it. Though it has come at a huge emotional, physical, and financial cost, we recognize that we are very fortunate. There are many other, equally deserving families who haven’t had the same kind of support or results and yet are doing everything in their power to provide the best possible set of opportunities for their kids with the resources they have.

My experiences with J have made me passionate about Autism Awareness --particularly in helping parents recognize the different ways in which ASD can present itself in children but also in raising general awareness and advocating for greater funding/support for all children with special needs. Whether ASD is caught early, as it was in J, or further down the line, there is so much that can be done with proper resources to help our kids reach their full potential. My happy, sassy kindergartner is living proof of that!

Thanks for continuing to share this journey with us and for sharing in our joy. xx

[Marina_D]

Thanks ellie for the cyber hug

Thank you baddmammajamma for that story. Big cyber hug to you, because it made me feel so hopeful. MY DS is only 18months and only babbling but Im hoping he can make some big strides with EI too. On that - I received a call from Lizzard Centre yesterday saying they might have a place for us. I nearly cired when i got the call!! We meet with Nicole the Director this Thursday. Right after we get the feedback from the dev paed about DS. Im not expecting good news but Im happy with the assessment that ASPECT did - much more thorough.

Welcome Back2 Insanity, I have recently changes paed's as I felt mine wasnt really taking my concerns seriously enough. He thought i was being over bearing and the issue was with me and that i should "give him a break". I now see a dev paed and she is a lovely woman and takes my concerns seriously. I hope you find the same peace.

Hoping everyone has a great day!!

[baddmammajamma]

Marina, so happy about Lizard! You will love Nic. Her passion for helping fellow ASD families is contagious. I will PM you my contact info in case you have any questions. Also, please let Nic know that we know each other. I am by no means a rain maker, but we are a long time Lizard family and zealous supporters of Autism Awareness. Xx

[Marina_D]

Thats awesome , and will do thanks!