How Jack is Moving Post Botox...

Besides the fact that he's cute ; ) -- I wanted to show the video of Jack post botox at one week. He's having an easier time getting to standing. His left foot seems to be turning in a lot more than usual. Perhaps releasing some of the high tone is causing this. I don't know but will be mentioning it to the physiatrist in two weeks. His right arm is totally straight -- which is nice.

This morning we went for a walk with his walker outside (we're having a "heat wave" in January!!) and he did well -- he had enough high tone left to hold on with his right hand (previously after botox his right hand became too weak to hold his walker) and he walked well with the nagging exception of the left foot turning in.

Here he is moving and crawling inside this morning:

Botox Follow Up Today

The follow up went well this morning. She didn't feel the need to serial cast Jack!! She said he's close to neutral in his feet and we still have lots of time for the botox to work as well. Of course his hamstrings are always a concern but I really don't think any amount of botox or casting would be a "cure" or "answer" anyway. I feel sometime in the future surgery will be mentioned.

We notice a nice improvement in his range of motion and his legs are hardly crossing at all when he's walking with his walker. His hand is nice and open too and he's wearing his hand splint with no problem (fingers crossed it stays this way).

I know the results are temporary, but our hope is to increase his range of motion even slightly to help prevent bone and muscle growth problems called contractures. He has several contractures already and what they call a fixed contracture in his right hand. He's so young and has so much growing to do -- I worry what all of the spasticity will do to his body. I also wonder when is enough enough as far as intervention. So far we've done the "minimally invasive" things -- but okay, it may be medically minimally invasive but what about all of the appointments and hours of therapy...I just hope we choose the right course for Jack.

So overall our botox experience with the med center's new physiatrist went very well, with only minor bumps along the way...

The doctor is also excited to learn more about the e-fix power conversion for Jack's chair. She's on board with letting writing and insurance battling to get Jack what he needs for independent wheeling! The NEW vendor (don't even get me started on the OLD vendor) called and is getting preauthorization. We will meet with him to discuss the system in detail soon.

I am still adjusting to Jason being back at work! These two really give me a run for my money!! Busy is always an understatement at our house! More to come :)

The E-Fix Power Conversion

My frustrations have grown greatly over the fact that Jack is not able to use his wheelchair independently -- the sole purpose for having wheels is FREEDOM! I have had it up to my eyeballs with our current vendor. I've been trying to get a system that will propel Jack's chair when he pushes only on the right side. Come to find out it doesn't exist for his brand of chair. I was discouraged and started looking online. Months of waiting and calling totally WAISTED!! I found something called the E-FIX (on the site click on E-FIX) and let me say I WANT THIS FOR JACK so very much!!!! Check it out!! It easily converts your existing manual wheelchair into a powerchair!



1. A simple bracket connected to the power distribution unit is installed on the wheelchair frame.

2. The manual wheels are removed and the E.fix wheels are "plugged in". (Existing manual wheels may be interchangeable with the E.fix drive wheels.)

With a turn of the wheel hub, users can choose between manual and power operation.



3. The joystick controller is mounted to the wheelchair frame.This component is quick release for easy removal.



4. The nylon battery pack is attached using Velcro straps. The power distribution unit plugs into the face of the battery pack as it sits in the pouch. To fold the wheelchair, only the battery pack needs to be removed.

Here's a google image of the system attached to a manual chair...



There are so many reasons why this seems like it's ideal for us. It's utilizing his existing chair -- we love his chair and the portability factor (we don't need a lift) -- he fits well in the seat and you can switch between power and manual modes.

I contacted a new vendor and he's going to work with us to try and get this system for Jack!

Here is the printable brochure (PDF)...

I am hopeful that this will truly let Jack be independent!!

Mornings Like This...

And sometimes I wonder how I don't get anything done?!?

Update!

Wow, I can't believe it's 2008! HAPPY NEW YEAR! Our Christmas was fantastic -- and I've uploaded a lot of new pictures to the December 2007 Album!

Jack had botox injections on December 31st and the procedure went very well. He was so brave! He cooperated and was excited to wear the jammies (hospital gown) and get into bed. He was put under general anesthesia and was given injections in his both legs in the hamstrings, gastrocks, upper arm, forearm, and thumb on the right side. Right before they gave him the mask to go to sleep he asked me to sing "The Wheels on the Bus" and the Dr. and anesthesiologist chimed in too! I learned both have kids under two years old -- so they were pros at all the verses! He woke up and started bouncing around -- and after he took some juice and rested a while we were free to go home. We will be heading to PT and OT several times a week for the next few weeks to maximize the benefit of looser muscles and help Jack gain strength that will hopefully carry over after the botox wears off.

Jason had off from work from December 21st until Jan 2nd! It was so nice to have daddy home for so many days in a row! We had so much fun on "vacation" and I was sad when he had to go back to work! We enjoyed the downtime and played with the kids, went shopping, and basically just stuck around the house and took it easy. We did go to Chocolate World in Hershey and the kids had a great time! They were fanstastic and gave us the "Royal Treatment" when it came to disabled access. We didn't have to wait in line and they had a special wheelchair ramp to get on to the tour ride!

I really hope your holidays were happy and safe! I promise not to be such a stranger to the blogging world now that things have settled down! To my blogging buddies -- I've been reading and catching up...now I'll just have to come out of "lurking" and tell you all how much I've missed you!!

Merry Christmas 2007!

Merry Christmas Everyone!

Twas the night before Christmas, when all through the house
Not a creature was stirring, not even a mouse.
The stockings were hung by the chimney with care,
In hopes that St Nicholas soon would be there.

The children were nestled all snug in their beds,
While visions of sugar-plums danced in their heads.
And mamma in her ‘kerchief, and I in my cap,
Had just settled our brains for a long winter’s nap.

When out on the lawn there arose such a clatter,
I sprang from the bed to see what was the matter.
Away to the window I flew like a flash,
Tore open the shutters and threw up the sash.

The moon on the breast of the new-fallen snow
Gave the lustre of mid-day to objects below.
When, what to my wondering eyes should appear,
But a miniature sleigh, and eight tinny reindeer.

With a little old driver, so lively and quick,
I knew in a moment it must be St Nick.
More rapid than eagles his coursers they came,
And he whistled, and shouted, and called them by name!

"Now Dasher! now, Dancer! now, Prancer and Vixen!
On, Comet! On, Cupid! on, on Donner and Blitzen!
To the top of the porch! to the top of the wall!
Now dash away! Dash away! Dash away all!"

As dry leaves that before the wild hurricane fly,
When they meet with an obstacle, mount to the sky.
So up to the house-top the coursers they flew,
With the sleigh full of Toys, and St Nicholas too.

And then, in a twinkling, I heard on the roof
The prancing and pawing of each little hoof.
As I drew in my head, and was turning around,
Down the chimney St Nicholas came with a bound.

He was dressed all in fur, from his head to his foot,
And his clothes were all tarnished with ashes and soot.
A bundle of Toys he had flung on his back,
And he looked like a peddler, just opening his pack.

His eyes-how they twinkled! his dimples how merry!
His cheeks were like roses, his nose like a cherry!
His droll little mouth was drawn up like a bow,
And the beard of his chin was as white as the snow.

The stump of a pipe he held tight in his teeth,
And the smoke it encircled his head like a wreath.
He had a broad face and a little round belly,
That shook when he laughed, like a bowlful of jelly!

He was chubby and plump, a right jolly old elf,
And I laughed when I saw him, in spite of myself!
A wink of his eye and a twist of his head,
Soon gave me to know I had nothing to dread.

He spoke not a word, but went straight to his work,
And filled all the stockings, then turned with a jerk.
And laying his finger aside of his nose,
And giving a nod, up the chimney he rose!

He sprang to his sleigh, to his team gave a whistle,
And away they all flew like the down of a thistle.
But I heard him exclaim, ‘ere he drove out of sight,
"Happy Christmas to all, and to all a good-night!"

Botox Postponed...

BOTOX WAS POSTPONED until Dec 31st....it's a long story. Insurance would NOT pay for botox without sedation....but guess what....they'll pay for it WITH sedation??!? Which is at least if not more than 3 times the cost. I could have paid a few thousand out of pocket but it just wasn't in the budget. They were supposed to have had the preauthorization completed beforehand but it came down to the 11th hour and we spent all day at the hospital waiting in a small room. I think I may go insane if I have to do that again!

After waiting at the rehab clinic we spent the rest of the day waiting at the eye clinic. The eye exam went well -- he wants us to not use Jack's glasses for 2 months to strengthen his eye muscles by making them work harder.

So we're scheduled for botox with sedation on Dec. 31st...

Botox Today!

We are getting Botox for Jack this afternoon -- we used to travel to CHOP but we've started seeing the pediatric physiatrist at the Med Center and decided to have it done there.

Jack will not be sedated for the procedure. I am nervous. At CHOP they used numbing cream and sedation -- here they only use the EMLA numbing cream. I don't like sedation, but I also know they sedate for a reason (pain and memory). I even had a dream about Jack's old neurologist lecturing me and damning me for not listening to him. UGH. Although last time Jack was sedated for Botox he had that horrible apnea episode that dropped his sats waaaay down and he turned gray/blue and aspirated which several weeks later caused pneumonia and a seizure that lasted for hours/911/ER stay....so I am all for trying it without sedation at this point. Double UGH.

Then of course afterwards he has an eye appointment. This is going to be one long day!

Please wish Jack luck!

The Out-Takes...

Bloopers, out-takes, boo-boos, bungles...whatever you call them they sure are funny! This weekend we attempted to take the kids' pictures in front of the tree for our Christmas Cards. We ended up getting a decent shot but I wanted to share the not so Christmas-cardy stuff! LOL

Deck the Mall!

Jack was chosen along with two other kids to represent Developmental and Disability Services in our county. We've attended several events and I wanted to share some pictures with you!

We did "Deck the Mall" and I gave an interview to a local radio station...and wrote our story for the newsletter.

We're very proud to represent DDS.

Our radio interview



Here's Jack attempting to take money OUT of the donation can! LMAO

It's been a rough few weeks...

This is some of what's been going on -- I wrote to a few of my mommy friends for support and rather than re-write it all again, I thought I would share those posts with you.

Nov 28th

We had our follow up appointment with our neurologist this afternoon. It was our last visit -- he's retiring and I am really sad to see him go. He's helped us so much through this past year with all of the seizures Jack's had. We will see a new doctor at the same office.

Jack has been seizure free since we started him on valproic acid along with tegretol (what he had been taking). His mood was great for a few weeks then the past 2-3 weeks have been really, really difficult. His obsessions have spiraled out of control (all doors must be closed, all lights on, the fan in my bedroom even though the door is closed must be on, his shoes have to be away if we're not going anywhere, if one sleeve is up the other one must be too and so on, so on). Jack has always had "quirks" but they didn't interfere with daily life. It seems like he suddenly has tunnel vision and has a complete meltdown if I tell him no, or wait, or if he knows the shower door is open...add a severe language delay into the mix and it's been, to say the least, a very trying time over here. He gets mad and hits himself, and even started pushing chairs over at the kitchen table if I tell him he can't have another (fill in food item here).

Normally he's so sweet and I have no idea what's CAUSING the behavior...I hate treating something that I don't know the root cause of, you know??

I even took him to the ped to make sure it wasn't his ears, neurosurgery doesn't think it's his shunt, and I am kind of at my wit's end.

Our neuro plan is to increase the vaproic acid slightly over the next two weeks to see if that helps his mood (it's an anti seizure med but is also a mood stabilizer). We have plenty of room to go up with the valproic acid and over the next year he feels we should be able to wean the tegretol out totally and rely on the valproic acid alone for seizure control.

If the valproic acid works in the mood department then we're good to go. If it doesn't he have us an RX for resperdal. Candi, I know you guys use this with Noah. Please, tell me EVERYTHING you know about it.

I am hoping for some normalcy for Jack soon. He's not his happy self. I hate to see him so wired and moody.

Thanks for listening...I'll update on how the increase is going...

Edited to add luckily we do see a neuro-psych Dec. 10th so I hope to get some insight on his OCD-like behaviors and what we can do to help talk him out of the rages and meltdowns.

sigh...

Nov 30th

Due to Jack's recent changes in behavior -- I really wanted him to have a CT scan/neurosurgery visit to rule out anything with his shunt. We are scheduled for a scan in the morning on wed. and an appointment with neurosurgery immediately following. If things get worse until then we were told to head into the ER.

I almost can't take it anymore. This morning he was in a heap on the hardwood floor banging his head over and over. He's been impossible. I hate seeing him this way.

I called his neuro too this morning to see if we can start the rispridal immediately vs. waiting to see how the increase in seizure meds helps as a mood stabilizer.

I don't know if I will have any hair left -- it's been that bad. I am going to call a few pharmacies to find someone who carries the and as soon as I get the okay from neuro I am taking both kids out to the pharmacy.

Thanks so much for listening.

Dec 6th

Wow, yesterday was a tough one! Jack did so well during the CT scan. Normally we have him sedated -- but they didn't have enough time on the schedule to do it under sedation so I said we could try without. He cried a little, but stayed very still. I sang to him (and everyone else in the room, lol) and he did calm down.

We had a lot of time to kill after the scan until we saw the neurosurgeon so we walked around the hospital halls and stopped at Starbucks for a latte and an applejuice (latte for me, juice for Jack, hee hee).

We signed in at the neurosurgeon's office and waited, and waited, and WAITED...Jack was having a full blown meltdown and I wanted to cry too. We were finally seen and the scan revealed a minute change in the size of Jack's ventricles. They were not convinced the outrageous behavior had anything to do with his shunt -- but were more convinced it was his seizure meds. They did a conference call with Jack's neurologist and he stated he didn't want any of the meds changed (I totally agree -- we finally have total seizure control). So we left without any real answers and we'll go for another CT scan in a few weeks to keep an eye on those ventricles.

The respridal has helped A LOT -- he hasn't had any excess sleepiness or anything else undesireable from the new med. It's taken away the 24 hour meltdowns and now when he gets upset it's definitely more in the typical or normal (for Jack) range. It's a temporary measure until we can sucessfully wean him from Tegretol and slowly ramp up his Valproic Acid...and see how his behavior is at that time.

Thanks for all of your thoughts and prayers -- they really, really mean so much!!

His neurologist's last day is next week. He called to check up on us last night and we went over our plan one more time. I thanked him for his help -- and he said to call early next week to let him know how we're doing before he has his last day. Like I said before, I will REALLY miss that man.

Our Family Videos...Through the Years

Here is a collection of video clips from 2003 to the present year. All videos are hosted by Google. The earlier clips do not have sound (2003-2005)

ENJOY!!

2008 - Jack turns 5, Morgan will be 1 year old!

Swimming Fun! Morgan and Jack 1 year and 5 years old June 2008

Jack Riley on the Go Movie

Jack at Possibility Place 4, 5 yrs old, April 2008

Jack at Possibility Place 3, 5 yrs old, April 2008

Jack at Possibility Place 2, 5 yrs old, April 2008

Jack at Possibility Place, 5 years old, April 2008

Morgan Chasing the Cat 10 months old, March 2008

Jack Climbing onto the Sofa 4yrs old Feb 2008

Morgan Leigh Pulls to Stand 9 mos Feb 2008

Morgan Standing (almost) and Playing 9 mos Feb 2008

Morgan and Jack Playing Jan 2008

Go Go Go MORGAN! 8 mos Jan 2008

Jack Moving Post Botox One Week Jan 2008

Jack's Idea of Fun! Jan 2008



2007 - Jack is 4 years old!
Welcome Morgan Leigh!

Morgan Eating Squash 7 months old -- Funny Faces -- December 2007

Silly Jack Standing November 2007

The Wheels on the Bus (Jack Style) November 2007

Jack Mastered the SPOON! October 2007

Jack, October 2007 Flash Cards

Jack Brushing Morgan's Hair October 2007

Outside with the Reverse Kaye Walker -- Sept 2007

Jack Playing in the Ocean Sept 2007

Jack Loves to be Scared - Aug 2007

Broons...July 2007

Miss Morgan Leigh is not happy! June 2007

Jack Riley says no June 2007

Morgan Leigh in the NICU - May 2007

Silly Jack Saying "Go Lay DOWN" - March 2007



2006 - Jack's 3rd year!

Jack and Daddy Eating Spaghetti - December 2006

Jack Using his Crocodile Walker - December 2006

Happy Jack Riley Talking and Being Silly! Sept 2006

Jack's 3rd Birthday Party - March 2006

Jack's First Independent Steps with Walker-- Feb 2006

Mommy Helping Jack Walk - Feb 2006



2005 - Jack turns two

Jack Just Learned to Pull to Stand and Cruise - July 2005



2004 - Jack is one year old

Jack Swinging at the Park - June 2004

Jack Learning Finger Feeding - May 2004

Jack is Learning to Sit -- May 2004

Jack's Teething and NOT HAPPY! March 2004

Happy Jack Riley Bouncing in his Jumperoo - March 2004

Messy Baby Jack Eating Cereal -- Feb 2004

Smiley Baby Jack Sitting and Playing - Feb 2004



2003 - Jack is just born

Jack Riley Tummy Time -- Aug 2003

Sweet Baby Jack in His Swing -- Aug 2003

Baby Jack on his Play Gym -- Aug 2003

Jack in the NICU -- May 2003

Jack Came off the Ventilator and is on CPAP - April 2003

Mommy Bathing Jack in the NICU -- April 2003

NICU Nurse Showing Mommy How to Bathe Jack - April 2003

Mommy Changing Jack's Diaper in the NICU -- April 2003

Mommy Watching Over Jack in the NICU -- March 2003

Jack in the Isolette in the NICU -- March 2003

Jack and Mommy in the NICU -- March 2003

See the Person...

Thanks to Jacqui I can share this clip with you...

Busy, Busy Week!

This has been one BUSY week! Morgan had her 6 month check up -- she's doing well! Meeting all of her milestones and is 50% across the board for growth! She weighs 16.5 lbs and is 26 inches long. She had immunizations and a flu shot. Jack also had a booster shot and a flu shot -- the chorus of cries were heard throughout the office! Due to a pharmacy issue we trialed her off of her Prilosec (reflux med) and decided to wait a few days to see if it returned. So far she's reflux free and it's been over a week! WOO HOO! I ended up taking both kids on my own. The pediatrician's office is small and I had an okay time of it.

Later, that same day, we had to go to the Med Center for Jack's physiatrist appointment. I had Morgan in her front carrier, Jack in his wheel chair, the backpack on my back and the walker on my arm. We got lots of stares -- I must have looked like a one-mom traveling circus! People jumped to open doors and a nice lady took the walker and carried it to the office!

The appointment went well. Jack was evaluated for botox and she feels he really needs it in both legs and right arm. We talked about what Jack can do gross motor wise and we also got a referral to the hand clinic for a day time splint for his right hand. She also gave us an Rx for Baclofen in it's pill form (right now we have it compounded into a liquid). I am a little skeptical about Jack taking the pill -- for those who have Baclofen in pill form, what do you do to get your kids to take it? Jack's scheduled for the Botox injections on December 17th. Not too far away at all! I was expecting a much longer wait.

We talked about Jack's wheelchair and she said she'd help us in any way to try and get what's called a one arm drive system for the chair. Jack is really not able to use his right hand at all to push the right wheel. A one arm drive is an attachment that will propel the chair when it's pushed on the left side only and keep it straight so he can push with his left arm to get around. It's probably going to take forEVER since the vendor is really, really bad about returning my calls and following up. Guess I'll go bug him again this afternoon. UGH.

Jack's been going weekly to LV College to participate in their physical therapy program. He is working with the PT students who are in their 6th year of school and getting ready to graduate. He loves going because there are other kids from his school there as well! It's a volunteer program at no cost to us. It's supervised by their instructor a Dr. of Physical Therapy -- who also works part time at Jack's school. Morgan even volunteered one week so the students could assess an infant. They used the AIM gross motor scale for which she scored right at 6 months of age.

Jack is a little under the weather today, so we aren't going to go to therapy. He had a low grade fever and is coughing. I hope whatever this is passes quickly.

I feel like I am forgetting things I wanted to write about! Oh well, that's the cool thing about blogging -- I can just start another post later ; )

Oh, one cute tidbit...the set of language builder cards contains 350 cards...every once in a while I go through them and pull out several cards to add to Jack's ever growing stack of ones he knows. This week I added a picture of corn on the cob. I knew he knew what it was, and when I asked him he said "Old Corn" I have no idea...I told him it was "corn" he smiled and said "old corn" huh??? it makes me giggle every time.

The Wheels on the Bus...

The People go Up and Down...

The Doors go Open and Shut...

The Horn goes BEEP, BEEP, BEEP...

All through the town...

YAY!

Trick or Treat!

Language Builder

A few months ago I purchased a set of Language Builder Picture Cards that Jack's speech therapist introduced last year. I love the detail of the pictures and Jack can interpret the information much better than a "cartoonish" picture or black and white stick/symbol type of drawing.

He impressed me the moment we opened the package! He knew so many different pictures and this was without practice or prompting (our set is different than the ST's). He loves to go through the set and has come up with some cute words for things as well. For instance, there's several similar pictures of the same thing -- but they may be a different color, in a different setting, etc to help with generalization skills. We came across a picture of a grey, fluffy, long-haired cat and he immediately said "HAIR!!!!!" to this day he still calls that cat hair...all I do is say yes, that's a cat, and he has LOTS of HAIR!

Jack wasn't totally enthusiastic about reading the cards in front of the camera, but I think the video is a good example of what he's learning. The sound/picture gets a little funky in the middle where Jack's mouth isn't moving with the sound! I don't know why that happened...anyway, enjoy our sweet little student studying his cards!

PS -- if you have any questions about the cards please feel free to ask here or email me at angwilhelm@gmail.com

The set was expensive, but very worth it!

Yesterday's Neurology Appointment

I love our neurologist. I am so sad to report that he's LEAVING. We will have one more visit with him before he goes.

Jack had a seizure free weekend and had one 15 - 30 second episode at school Monday. So far so good yesterday and today. He said Jack's doing well and adjusting to the meds and we're not at full dose yet. He said the small seizures are par for the course and to call him if things change.

I reported a major increase in appetite (not bad news by any means) and only having meltdowns when it's close to bed time. No major side effects for which I am grateful.

We saw him at the CP clinic and he said Jack has a contracture in his right hand and both legs. The leg contractures are not "fixed" and he recommended we have Botox and extra PT following. A few months back he referred us to the new physiatrist -- our appointment is Nov. 5th. She will manage Jack's spasticity (as well as our current ortho) and the new neuro will manage his seizures/meds.

He tried his best to get a multi-approach cp clinic started -- and due to red tape and MONEY it fell flat on it's behind. It's a big step in the right direction to get a physiatrist on staff and I am glad we have one locally so we won't need to travel two hours to CHOP. He said I should be adamant (aside from doing physical harm ) about using sedation for botox. He said due to money issues they just want to stick the kids with all these injections and not involve anesthesia. Sort of get 'em in and get 'em out -- who cares what the kiddo remembers or feels as long as it saves MONEY. Those are MY words, not his!! He said it makes him sick and he's going to go be a lawn doctor instead of a people dr. lol.

I thanked him PROFUSELY for his candor and help and wished him well. He said if he goes in to private practice he wouldn't see the need for us to travel "that far" he mentioned a place which isn't that far and I told him I'd follow him...lol, I swear I am not stalking him -- but a good neuro is so hard to come by and I told him that.

I am glad we see him again before he leaves so I can ask him if he's retiring or setting up shop somewhere else. Fingers crossed we can manage to keep him as our neuro!

The team watched Jack walk with his walker and said he really depends a lot on his spasticity. He has weak hips and this coupled with tightness is making him crouch and scissor slightly. They noted a huge improvement since our last visit on his motor planning and problem solving skills. I also told them how he's pulling to stand using finger-width ledges on windows, and door knobs.

Overall it was a fantastic appointment for information. After we see the physical medicine dr. we'll possibly do a targeted round of botox (meaning one location for one specific purpose) and it'll be in his right hand/arm. We'll see "what's left" tone-wise after the spasticity is reduced and go see a hand therapist for a proper hand splint.

As always, I'll keep ya posted. Thanks for reading!

Colin Farrell Talks About Son’s Cerebral Palsy

I had no idea -- it's not like I go around hoping celebrities have disabled kids, but it sort of makes it seem like it can happen to anyone. Thanks to Jacqui for bringing this to my attention!

QUOTED FROM US MAGAZINE

Miami Vice actor Colin Farrell may have earned a reputation as a bad boy in Hollywood, but at home with his four-year-old son James, he is anything but. In a recent interview, Farrell spoke about his son's disability, a rare form of cerebral palsy called Angelman's Syndrome which affects his speech and motor skills, and how James has shown "amazing courage" even as a toddler.

Farrell, who has joint custody of his son with mom Kim Bordenave, recounts a recent milestone in James' life: his first steps. “He took his first steps about six weeks ago and it was four years in the making. All the work is his, he worked his arse off for four years. And when he took the first steps it was incredibly emotional, there wasn't a dry eye in the house.”

And the 31-year-old actor is committed to helping his son have even more such moments, by reaching his "individual potential." He says, "With my son the only time I'm reminded that there is something different about him – that he has some deviation of what is perceived to be normal – is when I see him with other four-year-olds. Then I go 'oh yeah' and it comes back to me. But from day one I felt that he's the way he's meant to be.”

Fortuitously, Farrell became involved in the Special Olympics prior to James' birth. “It's mad the way the world works. It's bizarre. I experienced the overwhelming effect of being around those athletes pretty much just before my son was born with special needs." For Farrell, both experiences have been enriching. "[I am] incredibly blessed to have him in my life," he says of James.

Morgan's Turn