MOST IMPORTANT INFORMATION EVER
You won’t be able to do much with him the first session you have. Do not worry, I don’t expect it, neither should you. It’s going to take 3 – 4 times before he is relaxed enough to work with you. The first couple of sessions should be short & brief – with nothing more than just “Hi Alex, I’m X. This is my room, these are my things”. His anxiety will take care of the rest of his behaviour. We’ll bring toys/food/drink the first time... trust me, it will help relax him more to have the familiarity of his own things. The second time I’ll bring less items and then you introduce yours, the third time (if it all goes well – I’ll just bring food/drink & he’ll be more acclimatised to you & your stuff and should be more relaxed). There is a chance that we might need a few more than 2 – 3 times. That’s okay. Concentrate on building a relationship with him. Concentrate on him being relaxed in your company. Do not think of what you need to do with him other than this for the first few appointments... by appointment number 5, he should be relaxed enough to be in your presence, that you can start the work. That’s fine... as his parents, that’s what we expect.
Keep those first few appointments short, brief & as close together has humanely possible, after getting used to the idea of going/being there he’ll relax more & be more comfortable and his anxiety will decrease enough for you to actually do some work with him.
Please trust me, I know my son and I want you to work with him, it’s why I’ve asked you to help us build him into the young boy I know he can be. However, there’s an anxiety factor that needs to be dealt with first.
You’ll find him a much more co-operative & willing student if you follow my advice.
ALEX’S BIRTH STORY
After a wonderful pregnancy, Alex was born at 39wk 5 days by emergency C/Sec after a failed induction & coming into “foetal distress” despite having AGPARS at 9 & 10.
I was an uncontrolled diabetic & he had issues at birth with low blood sugar. Was on a drip for a few days.
Due to this, all of his immunisations were delayed, but given.
At 3 months old, despite my *best* attempts at breastfeeding, he hadn’t managed to gain any proper weight, his weight got to 15th percentile – so we gave it up & he went onto formula where he gained all the weight required within a week or two.
Throughout his life he has been a very happy-go-lucky, excitable, loving little boy who loves to be a part of his surroundings.
ANXIETY
Alex suffers from a mild anxiety. We manage it by not doing things in the afternoon, by not shopping/taking him to certain locations. Wrapped gifts were an anxiety factor for him, as were too many people in his house on Christmas Day (Nana, Grumps, Aunt, + 2 good friends we see regularly in our home), but this was too much for Alex who preferred to do his own thing. Am considering wrapping items he already owns to lessen stress and give him practice. His anxiety increases rapidly in new places with new people for the first few times. It takes time for him to relax before any good work can be done (see top of page)
At home, he’s not riddled with anxiety. He’s much more relaxed & able to cope in most situations, and this can often be the best place to introduce yourself to him.
BEHAVIOR
Alex is a very well behaved child. Loves to please & be rewarded with claps & “Good Doing X”. Likes to help, be given tasks to do. For example, after a meal, he pushes his chair back in, puts his bowl/plate in the sink, takes off his bib & puts it back in the drawer, for said reward.
BLOWING
Alex cannot form a blowing mouth to blow out a candle. Alex cannot blow his nose. Alex cannot/will not open his mouth wide. We have been doing a candle song/game to practice & have been doing “Open, Shut them” to practice the wide mouth. Alex is learning to blow a whistle, but I can’t make him form his mouth to the same shape for blowing without the whistle. Blows MUCH harder when using the Funhaler (Asthma)
BUBBLES
Alex isn’t fond of bubbles. He doesn’t like them at all. Doesn’t mind them being around, just doesn’t want to have anything to do with them.
CAR
He loves the car. It was one of his first words. He used to wake up in the morning, wake us up, and the FIRST word out of his mouth was always “CAR?” If he keeps saying “Car” at a location, it’s usually a hint that he wants to go home/leave.
CARING
Alex knows how to be gentle with things that need extra care, not that he won’t try step on the cat, but when told off, and told to be gentle, understands the concept & will be gentle again.
CONTACT
Alex loves touch. Alex loves to be noticed. Alex seeks our attention. Alex gives us great eye contact when not speaking but cannot do eye contact & speech when requested. Will wave/blow kisses on request.
CRYING
Whilst he rarely cries over any other matters, often Alex will wake from his afternoon nap (and ONLY afternoon nap) in tears. Whether he’s in pain/distress/fear – I have no idea. Any further communication other than holding him & talking VERY gently to him is unappreciated & unwanted. We have tried giving him a dose of childrens Panadol (in case of pain), being there in case of fear, tried distracting him with songs/toys, none of these will work and unfortunately, singing as a way to distract him makes it worse.
DAD
Alex is Dad’s boy. Will turn to him before he turns to me, however, comes to me for affection/hugs. He will tell his father “Doww” to get him to sit/crouch down and then “Ooooh” for Up to which Adam either picks him up and bounces his midriff on Dad’s shoulder or allows him to crawl over his dad.
Dad is going away for a month in May. I’m unsure as to how to help him transition, it’s just going to be a day-by-day process which hopefully doesn’t drive us all insane! L
FOOD & DRINK
Alex eats just about everything we give him. Loves things with cheese/gravy/pasta/rice. His meals are that of a 1-2 year old, mixed, not pureed, cut finely. Alex can use a spoon & wants to use a fork and will with assistance.
Alex has a few food issues.
1. Does not “bite”, instead preferring to fill/stuff his mouth with food.
2. Cannot use fork/knife and still prefers hands over spoon, but will use spoon when requested.
3. Can be mildly picky with new food – nothing I wouldn’t expect in a child similar to his age.
4. Cannot drink from a normal cup, doesn’t understand the physics of tipping a full cup over to gnaw on the bottom of the cup.
GAMES
Will throw/kick ball back & forth & can catch large ball.
Will play “mouth/voice/communication” games. “Indian” and “bbbbb”
Likes rough & tumble games
Likes being bounced/jumping/running/swinging/trampoline/tricycle/car/big hugs/strong tactile play.
HEARING
Alex can hear me if he’s at my letterbox and I’m at the front door (some 50metres approximately) speaking in a soft, gentle quiet voice. I can ask him to stop, turn around, and blow me a kiss and with his back turned to me, he’ll do exactly that! His hearing is obviously acute.
Woolworths Tuggeranong “Screamers” – high pitched sounds
Hair dryer, vaccum cleaner, flyspray
ILLNESSES
Alex has suffered from Asthma since about the age of 10+ months, and was hospitalised some 8 times.
Alex has “molluscum contagiosum” which we are treating with massage oil, tea-tree oil & Australian Lemon Myrtle. http://en.wikipedia.org/wiki/Molluscum_contagiosum#Australian_lemon_myrtle
Before treatment he had over 150+ molluscs. Now, within less than a year, he’s now down to 25 with only 1 new recent mollusc showing. He has mild scarring. Alex notices that the skin on his arm is different, and I’m not sure whether it tingles or hurts or is itchy, but he notices it often and doesn’t scratch/rub.
Alex is currently being treated for Strabismus and has just completed an 8 week course of drops to make his eye strong eye blurry (as a make-do patch).
MUSIC
Alex has a love of music that he makes, whether that be on a piano, shakers, bells... not so keen on drum (however, Mum thinks that might be a good idea to help build up muscle tone – she has an African hand drum that she wants to have him trained on.)
PECS
Alex will do this as a “party trick”... hates it with a passion, but will do it to shut me up for 5 minutes before he’s over it & won’t do it again, instead showing the “finished” sign with all of it.
ROUTINE
Follows routine & structure very well, however, is just as happy to have changes when required but needs notice. If given notice, he moves from 1 activity to the next, generally, quickly & easily.
SIGN LANGUAGE
Alex uses 1 piece of sign language “Finished” with a wave of an arm or two (pending what else he’s holding). Have tried, without success, to do additional pieces.
SLEEP
From the time he was a baby, he was a great sleeper, and whilst he has his nights, the majority of them are very, very good. We are strict parents, however, which may have helped that we did not give in when he wanted something different.
Alex has a great routine & whilst he had a few transfer (from cot to bed) issues – he mostly does what he’s been told to do. We have our nights, but it’s not as bad as the majority of “NT” children that I’ve heard about that have issues.
SPEECH
This is his most major issue. He understands VERY well. He gets emotion changes, he understands happy from sad from angry from frustration from excited. He understands facial expressions (has responded correctly when Mum or Dad shows happiness/sadness/anger/frustration). Understands first time requested unusual requests (such as; put shoe in sink, put block in fridge) which obviously isn’t rote learning. Alex will NOT do 2 word sentences. Will do 1 word “Dada” (waits for response) “TV” (Dada: T V”) “Ta” (Dada: Ta) “Dada” (Dada: Alex Want TV. Good Asking)
Alex’s current vocab:
| Dada | Mama | Nana |
| Ga-Ga-Gee (Lizzie) | Car (Caaaar) | Cat (Caaa) |
| Star (Daar) | Are (ahhhh) | Stop (Doh) |
| Door | Juice (Dooh) | Keys |
| Go | Food (makes eating sound) | Come (cuhhh) |
| Bath (baaa) | Cow | Moo |
| Dog (Doh) | One (caw) | Two (cwhooh) |
| Three (eee) | Four (awww) | Five (iiiiii) |
| Six (swswsws) | Seven (aaaah) | Eight (aiiii) |
| Nine (ahhhh) | Ten (Tvvvv) | TV (tvvvv) |
| Sean Sheep (saw see) | Thomas (Car) | Gordon (gaw-gaw-gaw) |
| Down (Dooooow) | Up (Ooooh) | |
SPEECH THERAPY
As I’ve been waiting for the letter, I’ve found 2 options that are most suited.
1. Brindabella Hearing & Speech.
2. Cheryl Barson - http://www.connectandrelateforautism.com.au/bio_cherylbarson.html Cheryl is an RDI Consultant with a background in Speech Therapy. I’m positive that elements of her training will move into Alex’s life – giving him the best of both worlds.
STIMMING
Alex has a few stimming behaviours. Occassional flapping when under extreme emotion (disappointment/excitement). He has a new sound (since mid Dec) of a question tone that he uses often now, which was cute to start with... and isn’t so much anymore. He “whoops” when there are no parents in the room whilst watching TV shows, but will also “whoop” when TV is on whilst playing with other items. Alex has a sensory need to have head contact, whether that be touching other people’s heads or standing on his own or lays on the ground with head on the floor to watch a toy. Alex can almost perform a full headstand, needing a finger touch for balance from Mum/Dad to remain in position.
TACTILE
Alex has only a few tactile sensation issues. Doesn’t like picking up wet wipes in his hands, but doesn’t mind wet jelly/foods but will not touch playdough, but doesn’t mind dry dough (such as moondough). Is being slowly introduced to sand (we have a sandbox at the back of the house) and played with rice at CASA. Will love to watch it fall but jumps back like “he’s been struck by electrical point” (says his teacher) if it falls onto his skin. Teacher thinks (in her personal untrained opinion) that Alex has issues with sight.
TANTRUMS
Alex doesn’t have them. Alex has had 1 tantrum in the time that I can remember – we put him in his cot because he kept getting out of bed – he cried for 30 minutes... that was it.
Not that we let him get his way – we are strict, loving parents who give him strong guidelines (I’m so VERY surprised that he doesn’t react more often!)
If Alex doesn’t get his way – he will do 1 of the following:
1. Run to the couch, scream in to the cushion (lasts 3 seconds).
2. Makes a depressed “awwwww” sound & mopes for a bit.
3. Will go and do something that pushes his parents buttons (light switching/annoying his sister) – something that *GETS* our attention.
TOILETING
Alex is still in nappies. We are attempting to toilet train (toilet time before bath). He is happy to sit on the toilet for up to 20 mins & play with his laptop. Does not understand body functions, however has now had 2 instances where he has used the toilet!!!! – hopefully is getting an idea about what’s going on – but I just don’t know... He will often have his hands down his nappy, this also happens when he has faecal matter on them as well. He surprisingly doesn’t find this distasteful. However, his parents do, and we keep him dressed in a onesie to curb the behaviour (and whilst he cannot do it whilst the onesie is on... the very second it’s off, the hand is right there!!).
WHAT WE HAVE DONE SO FAR
Mostly, we haven’t done much. We’ve tried just being parents & working with him & with our own wants to be “normal” parents who give our child boundaries & guidelines & love & support.
We’ve been clients of Therapy ACT and they have tried (on numerous occasions) to present PECS as an option. (See PECS)
WHAT WE ARE DOING PRESENTLY
Adam is going to do the Fabic “Creating a Positive Experience” workshop on 2 February for his & his son’s anxiety. http://www.fabic.com.au/assets/images/pdf/pdf2011/CPE_Canberra_02.02.11.pdf
Trish is trying to use “Communicating Partners” http://www.jamesdmacdonald.org as a role model for his speech & behaviour.
We have just completed 8 weeks of a medical patch on his good eye for strabismus.
WHAT PLANS I HAVE FOR THE FUTURE
After doing a LOT of research we are looking on the following aspects to help Alex.
1. An Ipad. Alex uses my phone for a game (BEEP) and I’d like to see him improve more by the programs available.
2. The Tomatis Method – Trish is considering doing this with Alex (if only she can work out how to keep a set of earphones on his head).
3. Audiblox - Trish is considering doing this with Alex (if only she can work out how to keep a set of earphones on his head).
4. Connect Therapy – This is 1 option (the cheaper of 2 options) http://www.connecttherapy.com/ and is based on RDI, however it has no feedback or assignments but could be combined with;
5. Relate to Autism - http://www.relatetoautism.com/ - not as expensive if combined with Connect Therapy & this program together, in comparison with option below.
6. RDI Therapy - http://www.connectandrelateforautism.com.au/learn_more.html The more expensive option but it does come with monthly feedback & homework tasks to perform. However, at almost $5K per year, this is not a cheap option as he needs an OT as well.
Whilst I’d love it if cost wasn’t an issue – truth is, that it IS an issue & I need to maximise the $12K to the best of its ability and because it needs to be something that is for more than after the age of 6 – something that trains ME to be his coach, is the better long-term solution to this issue.
IN SUMMARY
I know he has Autism. I just don’t see the reserved, shy, non-responsive child that I saw in that testing room on a day to day basis. I’ve always thought there was something MORE than just Autism going on with him.
