Posted by: 15specialneeds | February 8, 2012

2012 The year of the Happiness Project…

Hi Dear Ones,

Well, I think I can ‘write off’ 2011, as a pretty weird year for me personally. I just could not seem to get my ‘groove’ on and spent a year of worrying about schools, therapists, babysitters, ill-health, death and the ‘mundaneness’ of ordinary life. The end of 2011 saw an upswing, as the art work that Rebecca and I have been doing turned into a fun little exhibition in October, and hence a website is nearly ready to launch, with profits going to Luke’s chromosome charity. Then we purchased a home here in sunny California. We had been looking for a long time and when we saw a house one day, we bought it the next! It was such a quick decision, that our heads were spinning for quite a while! I also enrolled in a Graphics Design course with a view to developing a more creative spirit and eventually working in a creative organisation at some point in the distant future.

To improve on my wellbeing and state of mind have started a ‘Happiness’ project, based on Gretchen Rubin’s – The Happiness Project! I feel that this will help with all things Luke and family.

So, here is a brief account of Luke for the last few months. I am planning to do far more photographing and filming him and adding to this blog twice a week.

Luke is still very adorable and sweet and good-natured. He is now 4 and a half years old, and is so big. He weighs 20.5Kgs (45lbs) and is 109 cm’s tall.  We know all this, as we had him at the LPCH neurology department a few weeks ago (January 9th 2012) with a suspected seizure. This little ‘turn’ he had, occurred while at school and it was worrying for the staff. But an EEG showed up normal. I now think that it was possibly a sensory issue and him being very cross, as I saw a little of the same behaviour at home. unfortunately, the event at school resulted in him vomiting and then sleeping. We will keep our fingers crossed that it was a ‘one off’ event. His condition makes him highly susceptible for seizures, and whilst in the back of my mind it is a very scary thing to have, many people live very happy and successful lives with seizure disorders and I feel pretty calm about it all. He is still non-verbal and still really does not follow instructions, but we are working on one command receptive language skills. He will lead us to what he wants. When he is hungry he goes to his chair at the dining table. We have moved out of the high chair and into a Stokke Trip Trap chair, which is great as he can climb onto it and we can strap him in and keep him safe, as he still likes to slide about! He will take me to the toaster in the kitchen when he wants toast! To the microwave when he wants milk and to the fridge when he wants a drink or an icy chew.

We have a wonderful home therapist who is doing lots of ‘follow through’ work with him and carry over from speech therapy.

His week looks like this…

  • School from 9.30 till 12.30 everyday 5 days a week
  • Speech therapy twice a week
  • Hippo therapy once a week

He goes to a typical preschool 2-3 afternoons a week with our therapist so that he has typical peer interactions

At home he works on communication through picture exchange, turn taking, choice making and making eye contact.

Hippo therapy is a new therapy for him and we started late November, 2011. He is taken by our wonderful Physical Therapist who has been working with him since he was 12 months old. She had been trying to convince me for some time to do it, but admittedly I had been stalling, as I am afraid of horses, and was highly sceptical of what it would achieve for the cost involved. Anyway, I am very happy to say that it is wonderful for Luke! He goes on a Friday afternoon and when he comes home he is so happy and very engaged and makes wonderful eye contact. Last week I got those lovely dark eyes to look at me for a very long time as we played a tickling game. The movement of the horse and the fact that he can do all sorts of things on the horse (called Peppermint Patty) like kneeling, is amazing. I feel like a convert!

More to come!

Rx

 

 

Posted by: 15specialneeds | May 25, 2011

Back in the Saddle…

Hi Dear Ones,

Well it has been an eternity, and that lovely saying, often quoted to me by my mum, (probably when I was a horrible teenager) ‘don’t say anything, unless you have something nice to say’ applies to ‘don’t write anything unless you have something nice to write’.  Which is why my blogs about Luke have been none existent for the months of November to March. As I mentioned in a previous blog, life was pretty horrible when we moved and needed to place Luke in our new school district. I found myself being one of those parents who I read about on special needs news groups, who moan and groan at the lack of care and services their children receive from the school districts. We had been in a happy place at our previous district, so I really did not see what all the fuss was about, and put it down to parents having too many expectations. Well, that last laugh was on me, as I walked into the class room where Luke was supposed to go, and found that his teacher was wheelchair bound. It seemed like some cruel irony. There were seven children, Luke was number 8 and there were two aides.  How was this going to work for my little guy who can fall down, by just standing?  I had started to cry before I even left the room! I was all consumed and couldn’t face writing about him or anything.

Then on that first visit, I was told the class was going to be moving to another site, and that all the children from this class would move to the afternoon class. How was this going to work when Luke napped from one to three in the afternoon?  This was all going to happen after Christmas. Fortunately for me, the other parents practically started a riot.  I don’t know why I was so special, but I had the Director of Special Education, visit Luke and myself. So all this crazy stuff happened before Christmas, but I was told he would be in the morning class, he could go 5 mornings, there was a new teacher, and about 7 children – thank goodness. I had my lovely family from Perth arriving for Christmas, and all I could think about was Luke and school.

So, we turn up on January 3rd and there are 10 children, but at 10.30am  the ‘afternoon’ children come in taking the number to about 15 children, and the teacher who is wheelchair bound running the class. There was complete utter chaos in the room. Holy ….! Now the fun was going to start. I decided that I could not let Luke go everyday – that was impossible, and keeping him there 3 hours, not good, so I took him for 2 hours. The look on that boys face when I left him, I would either cry in the car, or feel sick. So why did we do it? Well, this is where it all goes a bit crazy when you have a special needs child. The children get out of early intervention at three years old, and the school districts then provide the funding for the services they require. But they have no money, so the developmentally based services your child gets stop, and services focus on ‘learning’.  But the schools have no money. Then started that emails, and the meetings and discussions. Also, you need to be compliant with the school district and let them get to know your child, so that you have adequate grounds later for suing them for private school placement. What are the alternatives? Well, very few it seems. I went to look at two private programs, one all the way in San Jose, and the other in Redwood Shores. I had Luke evaluated at the program in Redwood Shores. It is called Associated Learning and Language Specialists. In the meantime, the District felt they should try to transfer us back to Redwood City School District, then it took them 2 weeks to say ‘no’ they were full.

While this was going on we felt it would be an excellent time for us to have Luke independently evaluated thoroughly by a clinical psychologist, (we are just waiting for her report). So that we could have a clear and precise record of the best way for Luke could learn. It was then going to be hard to get her in the class to observe for one reason or another. ALLS came back and said they would take Luke! Simon and I were not at odds, but perhaps on a different page on how we moved  ahead. Do we just move him and fund ourselves, or sue the district? Oddly  enough we made the decision one night in early March. Simon was in Korea, and it was late at night here and it was not one of those conversations where some one is moving or in a hurry.  I was telling him some other miserable story about school and he said, ‘**&^%$$, let’s move him right now”! It was the happiest sentence I have ever heard!

So on March 21st, he started his new program and he is so happy there. He is in the ‘Jellyfish’ room, with 5 other children and 3 teachers and a support aide. I walk away feeling HAPPY. Is it perfect for the small fortune was are paying, not quite, but by comparison to the school district, my happiness and confidence that he is in the right place, it is worth it. In all honesty, my classroom expectations are not over the top. As long as he is safe, happy and with qualified people who love what they do, learning is a bonus.

So, during this time, I was wondering if I was having a nervous breakdown. I kept wondering what one actually felt like and if I would know I was  having one. The Oxford Dictionary describes one as ‘a period of mental illness resulting from severe depression or anxiety’.  I honestly thought of seeing the doctor to get anti-depressants , but couldn’t find the time or the motivation, and did consider that it was perhaps time to have some serious therapy myself (just to add to the therapy bills).  But I will leave this conversation for another day! I hope you excuse the fact that some of the future blogs I write may not focus on Luke – but some of my rambling observations on life and things that happen in this wonderful household and life!

We are in a good place.

Rachel xx

Posted by: 15specialneeds | February 23, 2011

Handle with Care…

Dear Ones,

It has been forever and I have been trying to get myself out of the horrible place I have been in mentally over the last few months. Mainly caused by the fact that Luke is in a school that cannot meet his needs, and the work that I have been trying to do to get him into a better environment. It shouldn’t be so darn hard, but it is. To top it off, when he goes to school for three days a week, he then gets sick and is off for a week, which is a cycle we have been going through for the last 2 months.

So, it would be easy to say that he has in terms of development, he has not made too much progress over the last few months, but he is at least showing more interest in his surroundings. For example we took the car through the car wash recently and he was looking at the spray and soap, and touching the window as the huge cleaning mops went by. In the past he has been too engrossed in a toy that he was playing with to notice. He likes playing in the car and climbing about. He made me jump out of my skin when he honked the car horn recently. He is doing more intricate things with his fingers and has been flicking  his fingers which is all good body awareness. He has started opening the kitchen drawers and climbing onto the kitchen stools when he sees a bowl that may contain an interesting snack. He will let Rebecca sit and cuddle him while they watch Yo Gabba Gabba for half an hour. He bites me when he is frustrated. Cuddles me when he wants a cuddle. Is still napping and eating well.

Just recently I finished a novel by Jodi Picoult, called ‘Handle with Care’. I have never read any of her work and it was given to me as a Christmas present. I really loved it as it really struck a chord with me. The story is about a woman who has a child with Osteogenisis Imperfecta, or brittle bone disease, and it is told by each of the characters point of view. The story centers about a ‘wrongful birth’ law suit, and raises questions about what you would do if you had known from pregnancy about an ‘imperfect’ baby you were carrying, and how it would impact your and your family’s life.  Obviously that child in the story is very different from Luke, but the struggles the mother has in regard to balancing therapies, keeping her child safe, being a good wife and mother to her teenager all resonated. One of my favorite parts of the book is the discussion on what makes a good mother. The discussion went something like this…A doting mother is one who follows her children, and a loving mother is one whose children follow her. It was very thought provoking.

It made me think about how we handle things in our lives and the balance between being positive and hopeful, and then realistic. Where is that line? I am a huge fan of the line that you can choose to be happy or choose to be sad. It is easy to fall into the latter when you know that what you do is not perfect, or close to it. I guess knowing that it may never be so, but that it can be good, interesting and challenging, is the stuff of life. It is easy to feel very alone in the process, so perhaps I need to handle myself with care.

Rx

Posted by: 15specialneeds | December 6, 2010

Locked out…

Hi Dear Ones,

Well, I am still kind of getting used to the house and its little intricacies! One of them is the self locking doors. They have those little buttons that you need to release in the door lock so that the lock will release. So on Friday, I was having a nice day at home with Lukey. His terrible cold had broken, and he did not get up till 10am.  He decided that he did not need a nap, and decided to let me know by launching himeself out of his crib. I have never heard such a huge bang or run upstairs so fast. As he was going to be up for the day, which is quite a treat, I quickly texted Maria to say that I would take Luke on the school run and let him have a play in the school, so would not need her for the afternoon.

At 2.30pm I was in our garage which is connected to our family room. Rebecca and I have a really cool art studio set up, and Nathan has a huge collection of swords and combat items! I was calling Luke to come out and play with me, and as he came along, he decided to close the door so that he could play with a toy!

Uh oh, the utter disbelief I felt when I turned the handle to find the door locked! OMG! I was able to open that garage doors and get out to test all the doors leading into the house and of course they were all locked. In my bare feet, I ran next door to my very lovely neighbours, and asked to borrow the phone to call Maria! She promised to be with me in 15 minutes – gulp.

I had fortunately left the TV on in our lounge room, so I stalked him through the window panes, as I did not want him to see me just in case he  got upset. But I was ready to smash in a window should I need to. He spent most of the time watching one of his favourite shows that had come on, thank goodness! (The Wonder Pets!)

The post man came by and must have thought I was crazy as he mentioned how cold it was twice, looking at my bare feet!

Maria turned up in no time, and let me in to an utterly calm Luke who look totally at peace at the world. Maria was very happy to help me and then happier to get going, but before she went I placed a key in an outdoor lock box – so that should this ever happen again – I wouldn’t need to phone anyone!

I think Luke was a bit surprised by the tons of kisses he got, and off we went to get Nathan and Rebecca from school.

Rx

Posted by: 15specialneeds | November 29, 2010

Our Big Move…

Hi Dear Ones,

I don’t quite know how we managed it, but in the space of 3 weeks we moved house! During the moving process, both Nathan and Luke were home sick. (Luke stil is!) Rebecca went to New York on a school trip, we had Halloween costumes to produce for school and held a Halloween party pot luck at ours with an entertainer for the children! All this  could not have been done without all the help from friends – Alison on costume making, Jose on packing the car several times over, Maria on children and packing duty, Sally on playing with Nathan and packing, a big thank you dear ones! Anyway…

We spotted a lovely home, and we were kind of looking due to the fact that we have extended our stay here another 3 years and this means high school for Rebecca! So we managed to get the lovely house in Palo Alto, which is only 7 miles from the other one – but puts us in one of the best school districts in terms of our typical kiddos. We have left a sprawling rancher with one acre of garden, for a two storey home with quaint garden, real neighbours and loads of street activity and a ten minute trip to school. I do feel that I spend less time in the car, and less time stressing about the crazy car trips to and from school!

I guess the big question was how was Lukey going to manage the change? I personally was more concerned about how Nathan was going to manage it all, given he is more concerned about change and spent a few times asking ‘why’ – but in fact he did great. As to Luke, he can hardly articulate his thoughts – but I figured as I explained to Nathan that we are all doing this together as a family and are all happy, this will be fun! At the same time, I did have a sick feeling in my stomach and had a few pangs of OMG lets just stay where we are. But even after the terrible day that I have had today seeing the class that Luke is supposed to be going to, I am happy we have moved and Luke is certainly happy at home surrounded by his toys and family.

So far, in our new home we have celebrated Rebecca’s 13th birthday – the teenage years are upon us yikes! and Thanksgiving! I cannot believe that it as been a year since I started this blog. Whilst it has been laid to rest for some weeks at a time, it is alway in the back of my mind. There seems so much to say and so little time to say it!  

Life is never quiet in our home and for that I am really grateful, but there are times I do wish for a lull, a boringness of routine, a personal life outside the front door of my house that does not have anything to do with playdates, shopping or special needs, or doing some mundane chore. It looks like the one thing I was really excited about doing – training to be an volunteer art teacher is now going to have to go away, as Luke’s school placement has unravelled this week – but that is a blog for tomorrow!

To finish off, I have been thinking about what I give ‘thanks for’ being Thanksgiving and all!  This may sound crazy and really it only passes my mind for a few seconds everyday – but it is consistent. When I wake up in the morning, I am so grateful to hear my Luke bouncing about and I think ‘thank goodness’  he is in my life today. 

Keep safe.

Rx

Posted by: 15specialneeds | October 26, 2010

Some Cool Stuff…

Hi Dear Ones,
 
Well after what seems like months and months of very slow progress, and a TV obsession with Yo Gabba Gabba, it looks like we have turned a small corner and Luke seems to be coming out of himself. He has now completed 6 weeks of school and after 4 weeks, he has gone from crying 40 minutes in the 1 hour and 15 minutes he was there, to no crying in 3 hours that he now there! I cannot tell you how overjoyed when I collected him from class and his teacher said that he had not cried and was really very happy! Oh Joyous Day! Today when I collected him – he was sitting listening to the songs for goodbye circle and did not need the tray attached to the chair and did not need any chewy things or toys to keep him in place. The attention he was giving the moment was fantastic.
 
So these are my impressions of Luke lately!
 
  • He has stopped with the Yo Gabba Gabba obsession and seeking out the TV for this, and is more interested in his toys.
  • He is seeking out the same toys he has always played with – but plays with them for shorter times and moves from one toy to another and moves about the house with them! He also brings many of his toys for me to play with and if it is a spinning thing – he like to play what I call the ‘stop’ game – he spins and I stop it – which you would think he would get cross about – but in fact he loves it, and then we take turns and he is always happy to give me the toy, and I use the word ‘more’ a lot which he find hilarious!
  • He is more adventurous with his hands and is willing to mush up the food in his bowls and get his hands dirty! yay – big breakthrough.
  • He has learned how to press the ‘on’ buttons to activate the propeller on his ride-on toy, which is not obvious, and today I managed to get him to press a slide bar on his toy garage to activate the sound. 
  • He is far more interested in his surroundings and when in the car is taking notice of traffic and tracks the cars going by for quite a long time!
  • He is looking at people as soon as they say hello to him – I  noticed this a lot last Saturday night when we went to the Rainforest cafe especially as he wondered up to people at other tables,  he also often smiled at whoever spoke to him!
  • He looked in the sky and noticed a plane flying overhead – woo hoo! I have been so waiting for that.
  • Can switch the light on in the room when you ask him to!
  • Maria makes him sit on the kitchen chair to put his socks and shoes on – which he will do willingly and assist.
  • He will wash his hands at the bathroom sink and will hold his hands out to help.
  • Spends much time looking at my mouth and how I move my lips when singing.
  • He is happy, smiley and in great health!
 Simon loves to tease me by telling me is is all to do with school – maybe. In reality he seems to be more ‘with us’ which is great.
 
Rx
Posted by: 15specialneeds | October 3, 2010

IEP- Individual Education Program

Hi Dear Ones,

Well, I cannot believe that Luke has been at school for 4 weeks now! Let me take you back a bit! The system here in California works like this. When you have a child deemed to have special needs, if they qualify at the time of their third birthday, they then get services offered by  local school district.  The care that they received before this, will have been funded by the State government under an early intervention program. This is what happened to Luke and he was getting all his therapies through the San Mateo Regional Center. Before tuning three, the regional center does an evaluation to see if your child will be eligible for services under the school district and  Luke got the ‘mental retardation’ sticker, which meant he qualified for special education in a preschool setting suitable for his needs on his third birthday. Summer babies are difficult to sort out due to the summer vacation, but he was evaluated by the school psychologist and we then have to attend a meeting called the IEP. Before the meeting, we had visited various class placements and had many discussions and evaluations. The team was wonderful and everyone who was part of the evaluation process all sits in on the meeting. All in all, there were 9 people in his IEP meeting to discuss his placement and the services that the school would be willing to provide Luke. It is a very daunting meeting and the document is a legal document and binding on the school district to provide what they say the are going to provide. It is a very stressful time for parents as children come out of the warm fuzzy world of ‘development’ into the cold daylight of ‘is this of benefit to his educational needs’.’The terminoloy changes to one of leaning ability, rather than ability.

In all honesty, Luke’s IEP held no surprises, we knew where he was going, and it was a matter of, are they going to provide speech therapy and occupational therapy in the classroom for him as an individual, rather than in a group setting? The school district did offer 1 hour of speech therapy and said that they would evaluation for OT and gave us 3 hours a month of home assisted learning. People keep asking me what happens in the UK and Australia, but I honestly don’t know, given I did not have a special needs child in either of those places! Much of the meeting centers on the goals that are put in place for Luke to achieve in the first 12 months of school and then we go back and re-do the IEP for the second year. However, as parents we can request an IEP at any time.

These are the goals that have been put in place for Luke…

  1. Luke will point to a desired object when presented with a choice of two items.
  2. Luke will take place items into a container and stack two large blocks. 
  3. Luke will attend to an activity for 5 minutes in 5 out of 5 trials.
  4. Luke will respond appropriately to “look at my face” in 2 out of 3 trials over 3 consecutive sessions.
  5. Luke will follow the finger point of his teacher showing a named object in 2 out of 3 attempts.
  6. Luke will localize to and look towards the speaker when he hears sounds, his name, and “no” warnings in 2 out of 3 attempts.
  7. Luke will look at familiar pictures when they are named, 5 different pictures in  2 out of 3 opportunities.Luke will increase his attention span to 2 minutes of sitting while being read a developmentally appropriate book and will participate in turning 50% of the board pages.
  8. With assistance and later with just cueing, Luke will use his hands to wave “goodbye” when appropriate and to point to a desired item.

Personally, I think these were pretty good goals ( I wrote most of them with a few tweaks here and there!). Honestly, if he meets half of them I would be thrilled!

He is at school 4 mornings a week Monday to Thursday from 9am till 12 noon and he has yet to do a full morning as I have been wanting him to get into the routine slowly. He has cried a lot for the first three weeks and this last week he has been happier. In fact, when I collected him  last Thursday, his teacher said he hardly cried and sat nicely for circle time. I came away crying for sheer joy of hearing that. His teacher has said that we should perhaps increase his time to the 3 hours, and I think I am ready for that! Let’s see how Monday goes!

Rxx

Posted by: 15specialneeds | September 7, 2010

Blog Vacation…

Hi Dear Ones…

Well, it would seem that while the children were all on vacation for the summer holidays, so was my blog. This means that I must be a very good mummy and not spend all my time looking at my computer and interacting with my children every minute of the day!  I try! Hubby was sad recently that I was not keeping up with his Facebook page, or spending time updating mine! Hah! On those few fleeting moments of not doing anything when I did manage to turn on the iPad and play ‘Angry Birds’ I would usually find Nathan looking on and then asking if he could have a turn – really I ask you!  Luke even has the knack of hunting me down at my desk and pulling me to the living room to watch ‘Yo Gabba Gabba’ with him! The reality is that I probably could spend at least half the day gazing at a computer screen and wondering where the day went, but I don’t and can’t!

So where did eight weeks vanish to and what was my little chap doing in that time? Well, there was Hawaii and the blog about that, and the nightmare of flying! But after that there was 2 weeks of very little, just hanging at home, while Hubby and daughter trotted off to New York for 4 days and LA for the day! Folks in Law came for a visit for a little under 3 weeks and then we had a girly trip to the beach in Southern California (with boys) for a week and then it was over!

During this time, we tried to keep Luke’s therapies going, had a trip to the Emergency Room in Huntingdon Beach as Luke gashed his head open on a glass table, we had Luke’s IEP (Individual Education Program) meeting so that he can start in a Special Education Preschool Program for services under the school district.

There have been times I thought my head might explode from the shear stress of it all, but like life, we move on – not necessarily upwards.

I feel that I may have undertaken more than I can actually do. I am the Secretary for the Special Education PTA in the Redwood City school district – which is a really big district. Am on a fundraising committee to help raise corporate sponsorship for Abilities United, called the “Authors Luncheon’ which is to be held in November.  Am trying to get a parents survey organised for IDEAS to get parents input of their children diagnosed with Chromosome 15 duplication Syndrome. (Luke’s thingy).  I have signed up to be a voluntary Art Teacher for another school district – which is a totally awesome program, and am doing an art class at the Pacific Art League! Phew. I felt that I really needed to ‘get myself out there’ and meet some diverse and interesting people, and that is happening – but I am wondering if the cost is needing to spend more time gazing at a computer screen!

In all of this, I am most excited by the art stuff as I totally realised recently that this is what I am most passionate about – and not bad at it, and it makes me happy to think about colors and schemes and buying paper and paint!

It also gives me something else to ponder other than my ‘special needs’ child. Luke is a HUGE worry to us at the moment, as his body does not seem to want to work in space properly. He  does all sorts of weird maneuvering of his feet, walking on his toes, literally, or on the side of his foot, and sliding his feet along the floor and just is a chaotic walker. We had a family trip to the fabulous Exploratorium in San Fransisco, and after a few hours – I was totally exhausted by just the management of him. He won’t sit in stroller, then will walk, then will want to be picked-up, then no sooner do you pick him up, then he wants to be put down. The one blessing of the day was while we were having lunch, he was holding my hand and then he pulled me to him and wanted a kiss! This is a new thing and I had been telling Hubby about it, and he got to witness it! Yay.

Sometimes a kiss can say it all.

I am now blowing you all a kiss goodnight… x

R

Posted by: 15specialneeds | August 9, 2010

After the party…

Hi Dear Ones,

Well we are done with the summer birthday celebrations of being three! In all honesty, the birthday party was a small affair that did not go without some hick up! For example the fridge freezer decided to give up on the Friday, the day my folks in-law arrive! (party was on Sunday). The bouncy house arrived, and the guy did not have a long enough extension cord, so Simon had to rush off and buy one, then it  never really inflated well and personally, I thought it  looked like a death trap!  I also had the party catered, and on the day lots of people cancelled and we had tonnes of food left over.  Luke fell asleep at 6.00pm and missed us singing happy birthday to him and seeing our fabulous home-made Yo Gabba Gabba birthday cake! Agghhh.

Oh well, on Monday a new fridge arrived and the left over food was taken to a homeless shelter. Mind you poor Luke has had the worst diarrhea I have had to deal with, and was pretty unwell with it most of the week – so we were therapy free .  I was just happy that no one else has come down with anything. The last week has been very social for me, out with some girlfriends for dinner and then to a play (Almost Anything Goes), out to dinner with folks-in-law and husband. Now will be staying home to get Nathan to bed at a reasonable time.

This is all I have for now! Will discuss the IEP count down next!

Rxxx

Posted by: 15specialneeds | July 23, 2010

Happy Birthday Luke…

Hi Dear Ones…

Well today and the next couple of weekends we are celebrating Luke’s third birthday – wow! I cannot believe he is 3! Perhaps because of the intense little road we have been on with him – it feels that he has been in my life for more than 3 years – bless him! We arrived back from Oahu late Saturday evening, and I think the stress of flying and having someone ask me 5 minutes into the flight to stop Luke from banging on the back of his chair, set me off on right old cryfest, which lasted 3 days!

I think an oncoming birthday milestone produces a profound sense of sadness of having this beautiful child – who is not normal. I cried that I had no presents for him and no idea of what to get him, as he all the spinning, musical, jangley toys you could imagine.  Cried that he just wanted to spend all the time watching his DVD player and that I enable him to do so, cried that he was not interested in playing at the beach or in the swimming pool.

Then the actual day arrives an it is really like no other and I am all good again, as I spent a couple hundred dollars at Toys r Us on more jingly, spinning, musical, cause and effect toys (who knew that there could be so many), all aimed at a 12 month old child because mentally that is where he is at!

Being a sumer baby, puts him as the youngest in his year group, but as he is so behind anyway – that it the least of our concerns. We have been having many meetings about him lately, especially since the Regional Center passes him to the school district from an educational and funding point of view. However, he still qualifies to be part of the Regional Center, due to his diagnosis. Part of the discussion is what criteria he should be placed under for the school district. I felt sad that our social worker felt bad for having to mention the criteria… they are…

  1. Autistism
  2. Cognitive delay of unspecified cause
  3. Mental Retardation

Well, we know that clinically he is not Autistic, and cognitive delay of unspecified cause is not right either as we have a specific diagnosis – so we know we are left with the mental retardation sticker – and really let’s face it – he most likely is. After this discussion, we then had to put together a list of goals that we would like Luke to achieve over the next three years and whilst I love having goals, objectives and strategies, I feel at a total loss when it comes to Luke – but once we got started it seemed a really good thing to do. Here is our list of what we would like to see Luke doing by the time he is 6…

  • Toilet trained
  • Can wash his hands and face
  • Can brush his teeth
  • Dress himself
  • Can talk
  • Can understand safety commands – Stop, Wait!
  • Eat using cutlery
  • Interested in his peers

Actually, we began to think that it would be great if Nathan could do all of these things as well! Is it ‘pie in the sky’ stuff – who knows? But now that we have thought about it and written it down it seems a good thing to have done. My favorite time today? Watching Yo Gabba Gabba with Luke on my lap – just chillin’ and being able to stroke that lovely ‘nut brown hair’!

Happy birthday baby boy.

Rxxx

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