Tuesday, February 8, 2011

Warning: Essay... Nah.. Thesis

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.

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.

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.

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.  
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)

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.

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.

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.

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.

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.

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

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.

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.

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

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).

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.)

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.

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.

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.

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.

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:
Ga-Ga-Gee (Lizzie)
Car (Caaaar)
Cat (Caaa)
Star  (Daar)
Are (ahhhh)
Stop (Doh)
Juice (Dooh)
Food (makes eating sound)
Come (cuhhh)
Bath (baaa)
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)

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.

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.

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.

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.

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!!).

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)
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.

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.

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.

Thursday, October 28, 2010

Achievements in contact & speech - a congratulatory blog!

Last night, after Boogle's dad bathed him, threw him on the bed (because he LOVES that), I came in to say hello.  I could hear the giggling & the "ge-ge-gen" (again) as his dad repeatedly picked him up, and threw him back onto our big soft bed.

I leaned down to give that gorgeous little boy a kiss - he took my hands, pulled me closer & wrapped his arms around my neck.  ACTUALLY hugging me.  ACTUALLY & physically embracing me.  Not just a "head lean" like he normally does.  It's not a HUGE step forward - but sometimes our steps are simply baby steps...

Mind you, he's always been good with contact.  But this was just more active.

His new game (that he made up) is to ask for his dad "Dadadada", take his father by the hand, lead him over to the couch with Dad's back facing the couch and say "Daow" (Down) and then once his dad is sitting down - scrambles onto his lap for BIG hugs & squeezes!! ;)

However, Dad, Mum & Nana are the only 3 people he'll hug.  Faerie gets a kiss on the head/knee/back - but we get the full contact stuff.

His CASA teacher insists that he'll be speaking within 12 months - but I'm not so sure of that.  His dyspraxia keeps him already from pronouncing words properly.  It's not that he can't speak - just that he can't speak well.  He tries so hard.  Monday whilst having a few moments to eat my own breakfast (a crumpet with vegemite) Boogle comes up to me - looks at my plate, looks at my eyes "Mawww Mamamama" and looks at the plate again.  (What a win!!!)  So, what can a mother do but hand over her breakfast to her talking son!! ;)

I'm working F/T contract for 12 weeks to provide more money for our children.  I miss them so much but I want to give catch up a few debts so that we have more money in 2011 - and whilst it won't be much (due to the minimal hourly amount I'm being paid, it's better than a smack in the head with a wet fish!)

Tuesday, October 12, 2010

DD is here...

12 October 2010

The day we'll mark Alex's future advancements by.

We've booked him in for Monash for 2011.  He's hopefully going there on Thursdays & Fridays. I'll hear more in the next few days...

I can't believe that we're actually doing this... that this is actually happening. (anyone reading this will see the stages of grief - I'll go through lots of them in 1 day - multiple times per day)... it's just how I work... :(

My "fear girl" was rotten to me when I was walking down the path after the diagnosis towards the car.  She said the most horrible, hurtful things...things like "See - NOW you've finally heard that you gave your son Autism. What did you mess up?" and "Your son has Autism & it's all your fault.  Good one you hopeless b*tch." She's a nasty little vermin. ***Fear Girl - that voice inside your head that tells you negative stuff - well, I have an full working knowledge of mine.... so I can see what a drop kick some messages I tell myself is.....

I know that we've created a supported environment here at home.  He doesn't "look" autistic at home. He gives lots of eye contact, lots of attention... but today at the assessment? I saw the autism huge & foreboding, it was a large monster that I couldn't ignore anymore.   So, whilst I cried when they gave me his assessment - it wasn't too far out of third base for me... I could see it plain as day.  But it hurts, oh god does it hurt.

So, there's assistance available - it's not "much" but it's much better than a kick in the teeth....  When I heard that you get 20 visits that are accepted by Medicare - I'm thinking... ok... 20 visits, which is 1 visit to the speechy & 1 visit to the OT per week for 5 months, every year!! Cool - that will *help* (seeing as we'll probably be doing 2+ visits of both, per week, for 12 months of the year, for about 2 - 3 years. Except NOT... it's 20 visits final - per lifetime.  Which does exactly what?? For goodness sakes, that's like offering to pay for a dinner & only paying for the GST. 

People keep reminding me that things could be worse.  And I love that they're trying to make me feel better - and I get & appreciate it.  They remind me that it could have been worse - that my child could have CF (Cystic Fibrosis - and thus have a maximum of 25 years to live) or cancer or something & instead I have this wonderful little boy who I love & who loves me... yada yada yada....

What I really want/need someone to say to me is "Geez... that sucks. I can understand how crap you must be feeling about it all" and for that to be IT.  Instead of trying to pep me up or make me feel guilty - just to say "Hey, that diagnosis is shit... it sucks. You must be feeling pretty low right now.  I'm here if you need me." Cause all the pep does is make me feel guilty.  (Geez I go on a bit, don't I?!)

Things WILL get better... it will cost us financially (these specialists are not cheap) - but in the end we'll have the best care for Boogle & hopefully he'll be able to care for himself when he's older...

Monday, October 11, 2010

Tomorrow, tomorrow, the world starts again tomorrow....

So tomorrow is the final assessment to the diagnosis of 1 Mr B Boogle and also a "is she or isn't she" for a little Miss Wriggle - who HATES sleeping during the day (gee she's 100% different to her brother in this aspect - he loves his sleeps!)

They're going to have a quick "informal" assessment of Miss Wriggle - to tell me if they have any "concerns" or not. I think "concern" is meant to be translated as "most possibly on the ASD Spectrum - but we're not going to say the words until it becomes official! So, I'm nervous for her - apparently it's only 1 in 10 girls who get ASD (so what's the stats for boys then?) Will have to ask more information about this tomorrow.

In Good News Department - Boogle had a few breakthroughs - 2 actually.  Here are the scenarios.

1. Boogle wants to play "Monkey" - he stands on the bed, holds my hands & starts jumping.
Mummy: Boogle, want to play "Monkey"
Boogle: ge-ge-geeee
Mummy: Okay, but you have to sing with me.
Mummy: <singing> One
Boogle: Cawww
Mummy: little Monkey
Boogle: ge-ge-geee
Mummy: jumping on the bed
Boogle: ehhhhh
Mummy: He fell down (down?)
Boogle: dowww
Mummy: And hurt his head
Boogle: (starts waving head from side to side)
Mummy: Mama
Boogle: Mumumumum
Mummy: called the doctor
Boogle: doh-doh
Mummy: and the doctor
Boogle: doh-doh
Mummy: said
Boogle: <freezes & looks straight at my eyes - anticipating the next move>

So, he's copying a LOT more.. YAY!!

Mummy: <holding his cup of warm banana milk>
Boogle: Cu Mooo Ta Mama
Mummy: <squees with joy>

Yup, he did it!! My little boy learnt a sentence we've been trying to teach him for MONTHS!! Sure, rote-learning & all... but hey... LEARNT & SPOKE the sentence without prompting (except for the cup of milk, of course)...

Friday, October 8, 2010

984 steps to acceptance - I think I'm almost there...

So we went for our 3hr interview where the psychologist from TherapyACT asked us a million & 1 questions.  It got really clear, really quickly, that Boogle is that much more different from the rest of the "GV" children.

I am a mother whose son has Autism.

That's not as easy to say as I want it to be.  I want to be able to hold my head high & be ever so brave - to be brave & not shed a tear, not feel remorse or sadness or grief.  But I don't think I'm ready for that yet.  Even now, I'm sitting here, recalling the events of yesterday & I've got tears streaming down my face.

But it IS getting better... I was watching him this morning & the clear voice in my head said "Of course he has Autism.  Doesn't change who he is now, does it? But now there's other people to help... NOW there are things you can do to help him - so get over yourself & just do them!!"

It doesn't change how I feel about Boogle.  It makes me love & appreciate him all the more, really.  Because it's more clear that this is never going to "fix" itself - that clear speech is NOT a few months away - that this is the new reality that's not going to change.

I'm not choosing yesterday as our "DD" - we still don't have that vital piece of paper.  She simply said (when I asked if the Boogle was anywhere near the ballpark) that she had "concerns".  I believe this was her way of opening the door to "yes, he does - we think you're ready to hear that now!"

But I'm booking Boogle into Brindabella Hearing & Speech Centre today - as I know I'll get *that* piece of paper pretty soon.  Actually, pretty soon is Tuesday.  When we go for our final piece of assessment.  When we finally get that piece of paper - I can see it will start to move things along.  But I no longer hope & pray for a "normal" boy anymore. Just that he can a) be the best version of himself that he can be & b)that he'll be able to be self-sufficient in his adult years.  Because the latter scares me more than anything else, ever before.

Thursday, September 23, 2010

Wordless Wednesday

Except this is to say - this is the reason I'm in a funk about Boogle's situation right now... There are animals to be patting all around him, other children interested in these hungry, furry creatures... and he's more interested in his ball & his hat... :(

Wednesday, September 22, 2010

Feeling the love... Part 2

Made a visit to a new friend today.  Pinky & Perky's Mum who has a really great attitude about the work she's undertaking with her boys.

She is someone who has seen it all before and knows the path I'm treading.

She is working hard with her boys - there are charts & illustrations everywhere!!  It's not an easy path, but it is obviously rewarding!

She overloaded my head with information, my bag with paperwork & books and my heart with the care & love she's giving!!

Thanks, I owe you one!

But I hope I can be as good with Alex.

Actually, I know I'll be as good - I've got some *great* role-models in the "Mums of Spectrum Children" field.

Tuesday, September 21, 2010

He's NEVER going to be "normal" - A pity party for 1 - Warning!!!

Oh My God.

It finally just dawned on me - well, not finally, and it's going to happen again & again & again as we go through each stage of life & we're not like "everyone else".

Where my Boogle - who never asked for this - who never did anything wrong - is going to NEVER go through life easily.  Where each baby-step is going to be a milestone... a HUGE achievement in the world & NEVER going to be up to the same level as his peers.

So, right now I'm researching health insurers - to see if we're getting the best deal for our money - to see if I can get more money back from them for using speech therapists & occupational therapists & god knows what else.

My poor darling Boogle - I'm not sure you're ever going to know how different the world is. Shukun & I see him struggle with speech - where he literally "forces" the sound out from his body - and it's not even clear most of the time. Or correct.

Today's favorite sound was "Goww".  It was the sound that explained "What is this?", "What animal is that?" "What noise does that animal make", "This is my interpretation on how to say the name of this animal and or thing", "This is my interpretation of the sounds that animal makes".  And you can see him really, REALLY trying - he watches our mouths for how to sound out the word and he WANTS it soooo bad... WANTS it like a passion & you see the cogs turning and then the sound he comes out with is like a compensation prize for what his mind/body will allow him to make. And there's almost a look of resignation in his eyes.

And I'm angry... I'm angry that my little boy has to suffer this.  I'm angry because apart from loving him, caring for him, helping him, teaching him, showing him, prioritising him... that I can NEVER fix this.  I can NEVER make it go away.  I can NEVER give him that life that I've been waiting my whole life to have with him.

Instead the Universe in its "infinite wisdom" has given my son these issues... and there's nothing I can do to fix it.

I said there were going to be days like this - I wasn't sure that I was meant to post them - but then I remembered what this blog is all about. The good & the bad... the strong & the weak.... the wins & the fails... both are equal... both are raw & healing.

Sunday, September 19, 2010

Feeling the love...

I just wanted to say a quick thank you to those people who are giving me support & love on FB and on their own blogs!

Just a quickie - to let you know that you've brought a happy tear to my eyes...


Festivals - A time for celebration, a time for learning, a time for grieving.

So, this morning Shukun, Boogle, Wriggle & I went to the Eid ul-Fitr festival.  It was to celebrate the end of Ramadan.  The month where fasting is intended to teach & remind Muslims about patience, humility, and spirituality.

And it's here, amongst a crowd of hundreds who are celebrating that month long work, that I feel so alone & really see Boogle again - not just as my son, as my little man who makes my day brighter, but as I compare him to other children his age - where he fits in the world.  Here's where I re-learn my lessons about patience & humility.

I'm ready for the diagnosis now - I'm ready to hear the bad news - because now I've seen it for myself.

There amongst the animals & the dodgem cars & the ride-on ponies - I saw a little boy who was having issues. I watched him as he closely examined his hand slowly opening & closing - something he does a million times per day.  I watched him as he turned his back on these petting goats & concentrated on his ball rather than these animals who were willing to do *anything* for a mouthful of more food from the cups.  I watched him as he was not excited about a pony-ride - not able to understand what was happening as he was led up & down a simple path.

And I grieve for all of these things - of not being able to explain how exciting a horse-ride is, how nicely the goats were behaving or how they were pushing each other over for more food, how fun the dodgem car ride is... of not having the motherhood that so many mothers around me were having.

Apparently this is normal. To grieve & to feel this loss of potential parenting. To have all your parenting dreams smashed because you have to do what you *have* to do - not what you wanted or dreamed about doing.   So, today, like a lot of other days in the future to come... I'm going to allow myself to feel this loss & separation of have versus want.  And get back up on that horse & work harder tomorrow.