Posted by: 15specialneeds | July 14, 2010

Recent Visits…

Aloha Dear Ones…

Here is an email I sent to all our lovely therapists the week before coming away. As I mentioned – life has been pretty busy for Luke.

 Friday June 18th, Infant and Behavior Unit LPCH  

We came for an evaluation before heading into the school district for services to get a clinical evaluation of Luke’s ability. Not totally exciting, unfortunately Luke was very cross when he had his head measured and then was unable to do anything else for him!! It was also getting late in the morning and on a Friday he can be very tired. However, Dr Tang did not consider him to be autistic, or indeed on the autism spectrum. He was very adamant that the best learning environment for Luke would be in a small class or one-to-one environment. He was a big fan of ABA as a therapy that would suit Luke in a playful environment. Pretty much keep doing what we are doing! I am looking forward to reading his report.

Orthopedic Specialist, Hangar Orthotics

This appointment was to address Luke’s tippy toe walking and how his feet are placed and support for those big cloppers of his, looking at his gait and posture. The team was fantastic! So patient and really thoughtful about what we should be doing for him. Totally considered that his issues were sensory seeking and that we would not want him to stop doing what he does completely. We tried an off the shelf support but he was too strong and was able to get out of it!

 It was suggested that really the best kind of support for his feet would be custom made! Uh oh – total interference and a cross boy. Unbelievably, watching his DVD player,  the specialist was able to caste his feet so that he could make custom made supports. WOW! They will be ready in three weeks! Steve did marvel at how wide his feet were! He definitely takes after me!

I have to say that while on vacation he has not worn anything on his feet! Thank goodness no one cares. I find that the biggest comments I get from people are those commenting on ‘where are his shoes’ as he kicks them off all the time! Theyassure d me that if supports work well, children like actually wearing them as the provide good feedback on where there feet should be and help them walk rather than hinder them, which is what a normal shoe can do! 

Redwood City School

District Evaluation

The School Psychologist and a special ed teacher, came to observe Luke and complete a questionnaire via information from me. Luke was really tired – but was such a star and easily makes anyone fall for him – I kept hearing – ‘he is SO CUTE’! Anyway, IEP will be held around or on August 18th, we have 2 options, one is the class is going to be at a school called Selby Lane and is literally 2 streets away. There would be seven children in the class if Luke is included. Roosevelt School has an ABA class has only 2 children in it. The class has a teacher and 2 aides, so given the need for one to one; we believe that this would be a great option. They felt the small ABA class with a move in the future to a class would be a good plan. We are really pleased with how things are shaping up!

Rachel xx

Posted by: 15specialneeds | July 12, 2010

Trying (Flying) times…

Aloha Dear Ones,

Well, it is so wonderful being able to experience visiting many beautiful places in the world and the excitement of an adventure often outweighs the worrying about airports and airplanes. However, I have to admit that I have a pretty high ‘worry’ factor about air travel. Last summer, we did not go very far, in fact we flew to Orange County, which is a 1 hour flight, and I flew it alone with the children – but just getting to the airport, forgetting to take the car seats out of the car as I was dragging luggage, stroller and children to the check in, was enough to make me want to ‘check out’! In February we had the dreaded flight to the UK to renew our visas, and we had no sleeping on the night flight out, Nathan being sick over himself and a fellow passenger’s foot, Luke in constant DVD watching or spinning a toy. It seemed like a crazy place.

So, after the 11 hour trip to the UK, a 5 hour trip to Hawaii on a plane seems really ‘do-able’! Our flight was at 9.10am – so we were up at 6am to get sorted and Maria took us to the airport – all very easy. The check in was quick and unlike many airports in the world, SFO gets families through in a way that a celebrity might get priority! There was no DVD watching in the car on the way to the airport as we needed to preserve battery life, and my sanity.

There we are, all excited and waiting, but there was a mechanical problem with the plane and our 9.10am flight eventually took off at 12.45pm. By 10.30am the DVD players were out! We managed to get seats together at the very back of the plane and Luke was great at ‘take off’ and landing in terms of seatbelt being on. Obviously strapping him to the seat is a bit difficult – but when the time comes he just seems to ‘do it’ and there is no crying. I guess the worst part of it all with Luke, is the fact that he is desperate to go to sleep, but he just cannot get to a place where this is possible. One of the funny little things he does, is when having a bottle of milk, is he will arch himself backwards in an attempt to lie straight on the floor, so cuddling him off to sleep just isn’t going to work.  It is also alarming to have him suddenly launch backwards. One of the difficulties for me is just the sheer physical size and strength he now has. He is 35lbs (16kgs) and strong.

Nathan went to sleep and we spread him over 2 seats and Luke played on the one remaining seat alternating between sitting on it and leaning on it, poking Nathan’s hair every now and then, while I stood or perched on the arm rest. I seemed to spend a lot of time in a really twisted and contorted position and my body actually ached the following day! Luke was also very clingy and Simon could do nothing for him. Luke has very few facial expressions but the intensity of his gaze at me when Simon is holding him while I disappear to the bathroom is intense!

Luke’s lack of motor planning also means that watching him bumble along the aisle of the plane an almost torturous experience. It can only be likened to watching a pinball in a pinball machine. I worry a lot about the poor child getting more stitches in his head by hitting it on a metal arm rest.  Can you imagine that at 33 thousand feet!

Later in the summer I am going to Orange County with the children, Maria and Rebecca and two of her friends. I have decided to stick them in the car and drive it!

 Rxx

Posted by: 15specialneeds | July 12, 2010

Aloha…

Aloha Dear Ones,

Here we are on vacation in Oahu, beautiful Hawaii! It just goes to show that when something needs doing like preparing for a vacation and sorting out both US and UK taxes before going on vacation, this leaves little time for blogging! Which is a bummer, as is seems that so much has been going on of late.

Okay, so in March/April while we were planning on what to do with our one month of hubby’s sabbatical, negotiating if we should do South America and the Galapagos Islands, I think it was the first time the husband and I, had a major disagreement on where we should go. He was all for South America (13hours of flying) and 7 day cruise of the Galapagos. It would be a holiday of a lifetime, and I cannot wait to do it one day without our lovely children. However, I figured that with Luke’s water obsession, it would be like a living hell on a boat, and I would get left to feel sea sick in a cabin while trying to entertain 2 small boys! Rebecca would be asking where the nearest mall was and we would be wondering why the hell we had spent so much money, and have it all completely lost on our children. So a 5 hour flight to for 2 weeks in Hawaii it was!

This is where I really miss Europe, a 2 hour flight and we would be in the South of France in an amazing villa with quaint town and fabulous food!  So on deciding where we should stay, I spent literally hours agonizing over properties on the internet,  looking at homes with pools and no fence, homes that were mere ‘steps from the beach’ , all a small child drowning nightmare. So I found what I thought looked a good compromise, townhome in a gated community, had pool and hot tub within a 7 minute walk, and a 10 minute golf cart trip to the beautiful lagoon like beach. All booked in April.

So, the summer finally hit California in a half hearted kind of way, and Luke, who we could not get out  of the toddler pool or big pool when he was allowed in it last summer, is now not interested in it!( OMG all that planning.) In fact, when I take him to the pool here, he would rather go in the boiling hot tub! I am thinking that as he has lost a lot of that lovely chubby baby fat, and his overall greater body awareness, he feels the cold more – which he finds unpleasant! So, we thought he would love the beach and the waves moving about his feet – no not really. He likes the sand and tries to lick it and the sea water, but he would rather not be there.  Agghhh

I have to say that Lukey has been really brilliant at settling into a new environment. I have brought his favorite crib items and bedding, but he has been great at going to bed and having naps.

So, I guess what I am finding with having a special needs child is that sometimes planning ahead makes no sense at all. And yet we are planning life with them to the last minute! Every day of every week seems to be about planning, planning, planning, and thinking, thinking, thinking. I know that even our typical children may not be happy travelers even at the best of times and our little ones with no idea of the world outside home and therapy, somehow put their trust in us to keep them happy and safe.

It is nice to be therapy free and enjoying him and trying to keep him away from the DVD player and Yo Gabba Gabba!

 Love R xx

Posted by: 15specialneeds | June 21, 2010

More Team Luke

Hi Dear Ones…

It has been a very hectic time for Luke. Last Friday, we were into Lucile Packard Hospital, to the Infant and Behavioural and Development Unit to see the wonderful Dr Brian Tang. It was a follow-up evaluation from the one we had done when he was 17 months old. Once again it was to evaluate if he was moving toward the Autism spectrum, and discuss the forthcoming transition from Early intervention into an education setting when he turns three (in 4 weeks) yikes! He was very helpful and kind. Believed that the best plan for Luke was to keep in a very small environment, with one-to-one tuition. He agreed that he was not Autistic, or on the Autism spectrum, which was very pleasing to Si and I.

Here is what the lovely Mayra (ST) had to say about Luke last week….

It was a busy week for Luke it seems. Lot’s going on in all therapies. This is what we focused on in speech last week and are also working on this week:

-Oral motor and sensory with more vibration to lips, tongue and larynx
-turn taking with toys-I get his attention with a cool toy, use it and have him reach for it as in taking a turn
-Choosing between two objects
extended vocalization-Luke is “singing along” to familiar songs with me and the computer
-the sound /oooo/ and /eeee/ intentionally produced in imitation along with songs
-face to face games that have lots of movement with and without sound
-intentional gestural communication-reaching, showing, pointing, pushing away
-first signs (more, all done) in hand over hand-he used to mind this a lot and now he gives me his hands to move for him!!

Luke has been very focused on faces and facial movements lately so I plan on capitalizing on that interest.
He did two things last week I thought were especially cool:
1. I hid his favorite picture book under a pile of papers as he watched me and then he swiped the pile off the book and smiled as he found it and reached for it. 2. My phone rang next to him (I think that i phone ring is familiar to Luke) and I did not pick it up. He looked at me and the phone several times back and forth with a look that just screamed, “Aren’t you going to get that?”…The End!

Love Rachel

Posted by: 15specialneeds | June 10, 2010

More on Team Luke…

Hi Peeps…

Here are some comments made by Sara our Educational Specialist and then Cassy our OT.

Sara’s input…

Thanks for the update! This is a great way for us all to collaborate and share ideas, particularly since it would be so challenging to coordinate all of our schedules for a team meeting!  I have observed the following over the past few weeks:

– Luke is really showing an increased awareness of his overall environment
– He’s been initiating some play with Nathan!
– He is referencing others more and using eye gaze to sustain interaction.
– He’s staying engaged for longer periods.
– initiating and sequencing more ideas – He’s now bringing Rachel to the microwave to request milk, which is huge! 
– definitely have noticed less drooling, too
– responds more consistently to increased affect  and exaggerated gestures within interactions
– his interests are beginning to change and expand
What we are working on: 
– increasing his attention, engagement, and communication through playful interactions around fun and motivating sensory-motor play
– expanding his repertoire of play and interests
– we’ve also been discussing ways to increase opportunities for problem-solving in day-to-day situations (particularly around things that are very motivating to Luke!) and exploring some more messy sensory play over the summer to help decrease his sensitivity to different textures and provide novel experiences
He has definitely been making some nice progress and it’s exciting to see all of the changes! Looking forward to collaborating and hearing everyone’s observations of what they are seeing as well.
 
Cassy’s input…
 
I echo Sara’s sentiments-great idea!

So, I am working with Luke and Rachel on:
Gross motor: developing core strength, particularly in the trunk and shoulder girdle and through weight bearing on the hands
Fine Motor:  gross manipulation and use of the hands
Oral Motor/oral sensory: jaw stability and sensory
Vision: attending and tracking
ADLS: doffing clothing, self feeding, potty habits
Sensory: oral and vestibular
attention: imitation and anticipation of tasks, request for activity to continue or resume

Details of what I am seeing:
-approaching objects with open hands and attempting to use hands to activate toys as opposed to always using mouth
-major decrease in his amount of mouthing toys
-intermittent tracking of flash light
-less drooling, major vocalizations
-attends to music, especially repetitive, seems to be anticipating routine of parachute, wheels on the bus
-very motivated by the pool and water activities
Take good care,
Cassy

I had a meeting this morning with the Abilities United committee for a fundraiser they do annually called the ‘Author’s Luncheon”. I have always wanted to go, but as it has been around Rebecca’s birthday, and having no one to go with (honestly how pathetic) , I have opted out – much to my regret. Anyway, looks like I am going to be on the committee this year and I am very excited by this opportunity.
 
Rxxx
Posted by: 15specialneeds | June 9, 2010

Emotions…

Hi Dear Ones,

I had a very weird emotional experience last week, and really it was so out of the blue! I was walking the Stanford Dish (very difficult) and I was marvelling at how my physical capabilities had improved so much since having Lukey! While having this thought, I started thinking about the day that he was born and how it all started so well and then became so clinical, and as the day progressed the looks of concern from the midwives when they looked at the monitor giving information on Luke’s heart rate.  I was wondering why I didn’t cry when the word ‘C’ Section started being used frequently.  When the decision was finally made for me that a ‘C’ section was to be done, the very core of me felt so scared, it was such a unbelieveably deep feeling, and still I was thinking – just get through this and it will be fine.  So, I am still pounding up the hill, and I was thinking I was so lucky to have a beautiful little boy, and then the tears fell. I was happy that there are very few people about, and it is one of the most beautiful places! I feel so blessed, because to have walked away from  hospital that day, without a baby, would have been the saddest day of my life.

Personally, I am not a big fan of crying. I don’t feel my ‘spirit has been lifted’ or has had some cathartic experience. I just makes me look horrible, and in my mind it is not an attractive look! Actually, I did cry when he was actually shown to me,  which is a first time after having a baby! (I guess with Rebecca and Nathan I was so exhausted when it was over, and so happy to have a healthy baby – it seemed unnecessary! )

Anyway, I cannot believe Luke  is three next month and while it is easy to think about what he is not doing in terms of development, in all honesty, it doesn’t really matter, especially when I think about his arrival into the world, and how I am finding an amazing group of people to help him and me.  I feel like I have just taken a big ‘chill pill’ lately and it is a really great place to be!

Rxxx

PS – Wish I could have stopped crying with laughter at the dance recital the other night!

‘The way I see it, if you want rainbows, you must have a little rain.’  – Dolly Parton

Posted by: 15specialneeds | June 7, 2010

Team Luke…

Hi Dear Ones..
 
I thought I would share with you the team of people who are involved with Luke’s weekly development at the moment!
 
Order is not special…as everyone is!
 
Jennifer –  Abilities United – Early Interventionist
Mayra – Speech Therapist
Cassie  – Occupational Therapist
Janelle – Physical Therapist
Sara – Educational consultant
Emily –  ABA Therapist
Melanie – ABA Therapist
Carrie – ABA Director
Pat – Social Worker  Golden Gate Regional Center – not weekly but oversees services!
ME!
 
Wow – eight people a week – as you can imagine, with each person having a set of just 2 goals for us to work on each week, that becomes 18 goals! Phew. This of course is not truly the case, but there have been times when I have felt so overwhelmed with the number of things I have been advised to with him.  Anyway, as Mayra has been seeing him twice a week for some time and just gets so in touch with him, and sees things that I cannot, she has been nominated by me and herself to run what is now called ‘Team Luke’ I have ‘snitched’ her report to the lovely team above and thought I would share it with you! (Hope you don’t mind Mayra!)
 
Here it is….
 
In speech this week Luke has been working on the following:
-oral motor and oral sensory (you will see this pretty much every week)
-initiating intentional communication via gestures, sounds, or any way he wants
-imitating facial postures-lip purses and kisses
-starting and stopping his vocalizations (vocal vibration) we do this by back patting and drum on tummy
-attending to pictures on a screen
-using a keyboard for cause and effect
 
What I’ve seen this week includes the following:
-Luke has an ever-increasing awareness of his lips and tongue in space
-resting posture for tongue is in a better neutral starting position for speech 
-increased vocalizations that vary in vowels ah-eh-oh
-less drooling
-improved attention to pictures (looks at images longer)
-cause and effect skills on computer are getting better
-he is imitating more facial movements and occasionally sounds (oooo and ma)-this is not consistent but he was never this interested before and now he is making an attempt!
Overall, I have observed a noticeable improvement recently in object permanence. He picks things up when they fall (wow! I never noticed him doing this before PALS 🙂 Attention is longer and getting it, isn’t as hard; He is seeking out novel toys and asking me to open boxes that previously did not interest him. I am so excited by this curiosity and he seems so happy, it’s contagious. Social skills are also on the rise. He looks around for me when I am not right next to him and has started bringing objects to me if I do not follow him.
I am looking forward to our on-going collaboration. I welcome questions and any feedback.
The End…
 
I think this a great email,l as I get to really comprehend what he is doing. Obviously some of the things seem so small and fleeting, but in his world they are huge. I was so excited the other day as he bit off a piece of my toast to eat – which was just so hard for him to do until recently because of the weakness in his jaw.
 
We were at an indoor play center this morning pretending to do PT  (Janelle is in Europe) and he became so alarmed when a small child next to him started screaming – the look of shock on his face as he literally leapt into my lap, was an emotion he just was not capable of 12 months ago. Funnily enough at dinner on the weekend – one of those lovely family moments, Nathan was bawling about something (probably about having to eat)) and Luke was bawling in sympathy! I was laughing – as it was crazy!
 
On a different note…I had the best laugh this weekend as we went to Rebecca’s dance recital. She was on stage for a whole 2 minutes, (and was brilliant) but we had to stay for 2 hours watching the most terrible dancing of middle-aged men and women. Well, at one point I just lost it and could not stop laughing! Simon had to hand me a tissue as the tears were streaming down my face, even now – I just cannot stop laughing. I mean – I give them credit for the courage they had, and it is easier to be in the audience than centre stage – but that did not stop the shear hilarity of watching senior citizens in hula skirts, with tattooed flabby bellies bouncing about! Honestly, laughter is the best medicine EVER!
Rxxx
 
 
 
Posted by: 15specialneeds | June 3, 2010

Is it time to move?…

Hi Dear Ones…

We have been wrestling with the decision of whether it is time to move home. The trouble with having to make a decision, is just that at times, making a decision. Obviously, our little journey to California for a two-year stint, has been extended and perhaps because of this, I have not really wanted to fall in love with it here for the heartbreak it may cause when we do have to leave. (Oh the gum trees and blue skies that remind me of my Aussie home). And judging by my Rebecca’s feelings,( if and when) we leave, I will have my hands full dealing with her unhappy emotions – the two of us together would indeed be horrible for Si!

I actually feel like I have been pretty good at getting on and enjoying the lifestyle, even though it is a somewhat temporary assignment, given my ‘control’ issues! But there was an initial six month blimp when I really wanted to go home to Cambridge. I missed my home and friends blah blah blah… One very big reason to stay has been the services that Luke has been getting which have been amazing. Anyhoooo, we have been living the nice life in our posh old neighborhood of Atherton and we have been wondering if it is time to move on to a new house in Los Altos or Palo Alto.

These are the reasons in my mind FOR moving…

1. Live in a normal neighborhood, with children about and friends to make.

2. Nathan could go to the local school and make local friends to play with on the weekends.

3. Less of a commute for me to take Rebecca to school everyday, and I would claw back 2 hours a day of my time!

4. Less of a commute for Simon – taking his trip home to 30 minutes as opposed to 50 mins some nights.

5. Luke would go into a special education program where there is a lot more money about.

6. Closer to the health club we joined and taking Luke swimming would be a breeze!

7. Rebecca would attend a local high school.

One of the drawbacks of our neighborhood, is that it is not neighborly! Let face, it when you have whopping house on an acre with gates – you can safely presume people don’t want to be bothered – period! Or perhaps, I just don’t know the right people. But there are no children playing in the street,  or neighbors where kids can go and play, nor are you able to dash next door to borrow an egg or an onion, (unless your willing to scale a 5ft gate, get mauled by a dog, and have it all stored on the house CCTV security system, which could be shown on Youtube at anytime in the future).

Oh, and not having to get in the car and drive EVERYDAY for 25 minutes each way. I endured that in Cambridge as well, because Rebecca’s school was on the opposite side of town and in traffic it was horrendous, let alone trying to find parking around the school. At least Bowman has a ‘drive-around’ system! What a gift to be able to walk my boys to school!

Reasons in my mind NOT to move…

1. The house we have is lovely and finding a better fit is going to be hard. In fact the rental market and sales market is down here.

2. Nathan going to a local school means dropping back to half days – OMG – he sucks the marrow from my bones at times (bless him).

3. Is it worth it for potentially one year?

4. Just the hassle of moving!

5. I have met the team that will be working with Luke if we stay, and they are all young and enthusiastic, if poorly paid.

In many ways the market here is probably going to make the decision for us. We saw a beautiful home a couple of weeks a go, but it went to the first applicant for the lease.  Nothing is really coming up, even the agents are telling us to keep looking on Craigslist! (How real estate agents and employment agencies must despise Craigslist!).

Anyway, I am really not stressing about it! I am happy to hang here, despite the minor inconveniences, but a new neighborhood would be a nice change.

Rx

Posted by: 15specialneeds | June 2, 2010

Star Wars…

Hi Dear Ones…

Well, Luke is not the only member of this family that we have to give much thought and time too, in fact Nathan our five year old, I believe takes way more time and resources from us that Luke on any given day. I thought I would share this story. A couple of Sunday’s ago, Nathan was invited to birthday party to a little friend from his preschool. The theme of the party was ‘sports’ games in their garden, and his favorite friends were there. After bugging me all morning about how long was it till we go to the party, he asked if he could dress in his Anakin Skywalker costume that I bought him the other weekend. Fine. Could he take the Anakin lightsaber I had made him to the party? Okay. So, party goes from 12 till 3pm which is quite long, but off we go. So while he is jumping about on his own playing his imaginary star wars game, all the other boys are all gathered together playing games that had been organized for them. Agghhh. I encouraged him to go and play with all the other boys who seemed to be having a great time playing ball games and sack races. Not mine, no he was slaying imaginary battle droids and sith lords. OMG. After an hour he asked me if we could go home! Really? Yep, he had had enough.

On the way home, he mentioned to me that nobody had played with him. Honestly, it is the sort of statement that breaks a mother’s heart when they think their dear little child could have been ignored at a party! But, as I was there, I did not have to worry about that one. I did have to explain to him that all the boys were having fun together and that it was his choice not to join in, and that perhaps not all little boys are totally obsessed with Star Wars.

Got me thinking about what is normal! Here we have Luke who looks normal, but isn’t, and Nathan who is supposed to be ‘normal’ – and I wonder if he is? I have wondered recently if I have some kind of ADD, as I cannot settle into anything for more that 30 minutes, when I mentioned it to Simon, he kinda didn’t disagree! Perhaps I’m not normal! Who is? Anyone…?

Rx

Posted by: 15specialneeds | May 27, 2010

Little Nut Brown Hair…

Hi Dear Ones…

Well here is one for the  books! While I was at one of my many trips to Target recently, I saw a child friendly hair clipping kit, which looked ideal as I had been toying with idea of cutting Luke’s hair myself. The screaming and stress of the dreaded barbers and staff who have no idea what ‘quickly’ means!

Yesterday I decided while he was having his lunch secure in his Rifton chair with Yo Gabba Gabba on the TV, I would have a go! So, apparently after watching a DVD on haircutting it does not really qualify you as a hairdresser! OMG, nearly a bald patch on the back of his beautiful little nut brown head with the very first attempt!

So, off to the hairdressers we went after his nap! On entering ‘Supercuts’ there were plenty of staff waiting for a customer, so I asked who would like a ‘screamer’. Oh Great! So he started whining as soon as he saw the gown and scissors. To the young girl who offered her services, my directions are ‘be quick, and as soon as you see a gap in the tears just get in there’! Of course she needed to use clippers as she had to even up the big mess up I had made.

After what seemed like agonizing hours, of crying and squirming, she seemed to want to give up, but had done a great job, but one of her colleagues came to the rescue, to do the finishing touches, which was a blessing! Now we have found Gina, the most wonderful hairdresser! At one point we were standing with me holding him, so that he could look out of the window at the cars and trains, and she was standing on the reception sofa so that she could get to his head! She was a STAR!  We will go to her regularly so that we can build a relationship, and hopefully not scream and cry so much.

So, at least something good came out of my attempt to be more than I am!

Rx

PS: There is a lovely book called ‘Guess How Much I Love You’ and there is a little rabbit in it called ‘Little Nut Brown Hare’ and he reminds me of Lukey!

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