Posted by: 15specialneeds | May 20, 2010

Neurology Appointment…

Hi Dear Ones,

Well Tuesday, Luke had his six monthly check up with our neurologist Dr Duane. It was a good appointment given it was 1.00pm when he is usually tucked up in bed! It was great to chat to her about some of the questions I had, especially in regard to his motor planning and sensory issues. She really did not shed much light but was very happy to see him isolating his pointer finger and playing with a spinning disc on the wall with both hands. He started to lick the toy, when I said ‘Luke, No! and he stopped and looked at me! Yay Lukey!

Dr Duane said that she was happy to see him one more time in one year and then she would not need to see him again. All we need to hope for is that seizures don’t kick in, as she will be our first call of reference. One of the questions I did ask was – is there a phenotype for seizures? As many of the children I read about often have behavior issues, ADA, ADHD, and autism. She said that she wished there was, but given a set of circumstances anyone can have a seizure. Unfortunately when there is an abnormality in the brain – it is at greater risk. Anyway, we will worry about it if and when it happens. For the meantime, she was impressed at the level of services we had been able to get for him!

Rx

Posted by: 15specialneeds | May 19, 2010

The things you do…

Hi Dear Ones,

My morning was aghhhh! I really should have known that a visit to another Vision Therapy specialist was going to be a waste of time, and it was!  So, after seeing Dr Kayagama a few weeks ago, who said ‘bring him back when he is 5’ really turns out to be the greatest advice! Did I listen – NO! I got an email follow-up from another optometrist, saying that she agreed with Dr Kayagama’s assessment, but said that they would be  better able to help and assess his needs.  

So, I had to cancel his ABA therapist, and Playtime at Abilities United, so that we could go to this horrible old building, be kept waiting 20 minutes, (thank God I am at least prepared with a basket of toys!) for absolutely nothing. Honestly, the woman had no idea that he had special needs as I had outlined in the email I had sent, which I reminded her about and then she said ‘oohhhh I thought your name was familiar! Aggghhh.

She kept asking him if he would like to ‘catch the ball’, No for heaven sake – he can’t due to his poor fine motor skills, and he cannot understand directions. Then she thought a balloon would be fun – OMG and the straw that broke my back was when she wanted him to wear 3D glasses and look at images in a book. The glasses sent him into a different stratosphere of crying!

Sixty two dollars, minutes later, I was out of there, with a never to go back again attitude. I felt really sad that I put my little boy through this useless morning. I guess as a parent, you try to do all that you can to help your children, but really, this morning was not helpful to anyone! Okay, so he looks out of his eyes a little oddly at times, but until he can really understand and communicate his needs in a more meaningful way, vision therapy is canned!

Rx

Posted by: 15specialneeds | May 17, 2010

Some cool stuff today…

Dear Ones,

I just had to add an extra post for today about a couple of cool things that Luke has done today! We have been doing PT with our lovely PT Janelle for ages every Monday at 9.00am, and over the last couple of weeks have gone to an indoor play area, as home was getting a little lacklustre.  He gets a bit whiney, but one of the staff members was watching him and he was looking at her very intently and then he smiled and WAVED at her – wow!

We came home, then it was time for ABA therapy with our tutor Emily (sounds very formal, but lots of playing was being done!). At 11.00am he was very whingy and whiney, he came and got me, took me to the microwave and wanted to be picked up and pointed to the microwave, which means that he wanted milk. When I asked him ‘would you like some milk in your bottle’ he was all happy and excited! Then he had a lovely lie on the floor with his milk and blanket!

When I came in from the school run with Nathan, he was so happy to see us and was looking very intently at Nathan and was trying to touch his hair and really getting down to Nathan’s level (who was sitting on the floor)and trying to get a good look in his eyes, of course when I asked Nathan to cooperate with him – he wouldn’t!  The previous night he came up behind Nathan and licked him on the head – which we kinda interpret as a kiss! I then got one down my chest!

Rx

Posted by: 15specialneeds | May 17, 2010

My Saturday…

Hi Dear Ones,

Well Saturday I got up at 7.30am and went out for the WHOLE day and got home just after 5.00pm. Was I exercising, shopping and having lunch –  no! I was at the Third Annual Autism Conference held by Stanford University. I have to say that I really enjoyed my day, and although Luke is not truely autistic, many of the issues concerning his development fall along similar lines and therapy strategies.

Anyway, it was a good conference (not as good as last year). Many of the talks were highly technical in terms of detail about research being done on various parts of the brain or genes. I was impressed to see Luke’s little duplication flashed up on a power point presentation given by a geneticist. In terms of genetics, six percent of children diagnosed with autism have a genetic disorder, which is quite a significant number, so it appears that all children in this area are  offered genetic testing if given a diagnosis of autism. This is great news.

My favorite paper was about a study that had been done by Marsha Mailick Seltzer who had completed research on how families in particular mothers were affected by Austim Spectrum disorders in adolescence and adulthood. She made that great point that so many issues/articles/research is focused on children and early intervention, and that it is easy to forget the impact this diagnosis has in later life. I guess the encouraging thing that came out of the research was that this is a time (high school) there was a sense of improvement in the life of these teens and often behavioral issues tended to be managed. Research was also carried out on the stress levels of the mothers, and they also looked at the dialogue that mothers used when describing their special needs teen. It was found that those individuals whose mothers were warm and supportive, had better relationships with their teen that those who were overly critical. The point made was that, it often the adolescent years that you (as a parent) will be often be the most critical! Made me think of nagging Rebecca! Reminded me to tell her something good about her at least once a day! Okay, maybe every other day!

One of the more interesting talks was given by a doctor called Karen Parker, who has worked with rats and monkeys looking at the effects of oxytocin. This hormone is often referred to as the ‘love’ hormone as it is present in women when they go into labour and it occurs during the ‘let down’ phase of breast feeding. It is only found in mammals and for ethical reasons it cannot be injected into directly into the human brain, but tests have shown that when it is injected in to rats and monkeys there are significantly increased social bondings. They have been able to show that when given to people with autism, via nasal inhaler, there is greater eye contact and social gazing.  It has been making the headlines and a funny article can be read by clicking HERE!  I had to laugh, there was a woman at the table who obviously had a ‘thing’ about testing on animals, she kept muttering “ohh…poor rat….ooh poor monkey…” It drove me CRAZY! Honestly, I would rather they test on animals and not humans! How do people think we get these amazing drugs that improve that quality of life for millions of people everyday?

The last talk was given by my personal favorite Dr Heidi Feldman, she was on the assessment panel when we took Luke in to Lucile Packard to the Infant Behavior and Development Unit. I will never forget her first question to Simon and I ” What does it mean to you if I tell you that you son is Autistic today?” I don’t know how I managed not  to cry and was able to reply, that for me, it would mean lots of work in educating myself on how best to help my Lukey. Her talk was on language development, which was very appropriate to us at the moment, given Luke will be three in several weeks and cannot say anything! (Mama is emerging, yay!) Basically she went through what was typical for children and then went through the types of therapies. She said that ABA, was possibly one of the best start with, if these is no emerging language by three, and that while ABA, has had some bad press it has been used very effectively to get the ball rolling – so to speak. Basically like all things it will depend on the quality of the therapists using any technique!

I really enjoyed my day, they also provided nice coffee, snacks and lunch. I was with my friend Wendy, whose little girl Caitlin has the same condition as Luke (how amazing is that) and we were able to chat at great detail what our little ones were doing, the services that we were able to get and just be supportive of each other. One again, it is amazing that while they have the same condition, they seem very different – but similar! We should have ended it with a cocktail somewhere, but my day ended playing with both boys on the trampoline at 9.00pm in the dark, having fun!

Rx

Posted by: 15specialneeds | May 9, 2010

The Cure…

Hi Dear Ones,

Well, not long after finding that Luke had a diagnosis, my attention turned to researching about his condition, not too much our there – but some and all scary!  Then of course, as many of the children with his diagnosis have and display autistic tendencies, my search involved looking at what was on offer in the Autism community. One of the first places I looked at was the Son Rise Program, which I really love. The premise of the program is that with a loving, non-judgemental attitude, if you work with your child for 12 hours a day, you can potentially cure your child of autism. Indeed from the number of testimonials that I have read from families that have been through the program with complex issues outside of the Autism spectrum have ‘cured’ their children their as well, or if not cured them, enabled them to have been mainstreamed in school, and raised their IQ significantly.

This kinda set me off I think on a mental quest, that if I somehow did the program, read the books and somehow dedicated myself as his teacher  (along with a host of volunteers), that I would be able to some how ‘cure’ him of IDIC 15. That isn’t going to happen. In fact on some occasions I have even wished he was ‘autistic’ so that he could be ‘cured’! Yikes.

A few months ago I decided that I was not confident enough to know what his needs were or what the next steps were, so hired a wonderful lady called Sara, who is an educational consultant, to give me help in understanding what I need to be doing for Luke. She had been through the Son-Rise program and I don’t see her waving a magic wand, she offers advice, is a great sounding board and is kind enough to tell me I am doing a great job! Anyway, I don’t know what the turning point was, but I decided that it was not my job, to ‘cure’ my son, or indeed the job for anyone else. Perhaps it was the book I read recently that mentioned that the only thing we can do as mothers, is give a loving and caring environment, do what we can today, and not worry about the future.

This week, we are very fortunate to have a new therapy team become involved with Luke. The company is called the Pacific Autism Learning Service (PALS), and they do a therapy called Applied Behavioral Analysis, (ABA). It is almost considered the opposite of Son-Rise, but basically I have decided that as long as the team like my child, respect and encourage him, enjoy being part of our family while they are in our home, can measure any achievements he  makes, that will be great. I am certainly not hanging up my role of helper/mummy/therapist of sorts, but am willing to get him the best help that the State of California is willing to fund! We have a couple of months now until he is three, and this will come to an end as the school districts take up his education.

We learnt last week that the preschool that he is likely to go to is moving to another school campus, which is 2 streets away, hooray, and will be offering ABA!

Obviously, I am a bit anxious about how this week will go with a new team of people for Luke to get to know and interact with, but I will keep you posted!

Happy Mothers Day!

Rachel

Posted by: 15specialneeds | May 5, 2010

Sweet, Sweet, Sweet Corn…

Sweet Corn…Well some cool stuff has really happened lately for Luke. Last week when I was discussing his goals with the Case manager we have at Abilities United, she was  discussing how we need to get him using both hand in his midline. Huh – you say? Well, Luke has a tendency to play with things with just one hand and rest his body weight with his other hand. This seemingly small thing, stops him from being able to fully play and explore toys in his environment.

 So, I was wracking my brain about what we could do to encourage this! Sitting in his highchair is the most comfortable place for him to be as his whole body is supported, so we talked about food that he could hold and eat. Well, as he loves sweet corn,  I decided we would try a corn on the cob and see if this worked. Well, we hit ‘three birds with one stone’ so to speak, as not only did he hold the corn cob holders beautifully, he bit into the corn, which is something he does not like to do, and then his hands were a great big corny mess, (dirty hands) another thing we don’t fancy!

 Chicken Crispers…On Saturday night we decided to go as a family to a restaurant called ‘The Elephant Bar’. It is in a place called Burlingame and it is really nice as it sits on the bay and you can see the planes coming to land and take off, which is very spectacular. It has been a nice day and off we went armed with DVD player for Luke and a grumpy Nathan.  It was very busy, but as we had booked a table we didn’t have to wait long and you soon realise with a largish family, not booking is a potential disaster, especially when you need a highchair. (If the restaurant doesn’t have one, we don’t go!)

 Luke was so brilliant! He sat for nearly 90 minutes, and after a small debate as to whether Nathan and Luke should share a meal, (I don’t know why) we ordered them the chicken crispers and french fries! One each. Thank goodness! Honestly, I have never seen Luke eat so much, he even ate some of Rebecca’s rice. There he was at one point, holding the chicken crisper in both hands, gnawing the deep fried ‘crisper’ bit off the chicken (I don’t even want to think about the fat!) But yay for the midline hold!

 At the Park…On Sunday we went to the Mountain View farmers market, and we managed to get there at the crack of 11.30am! Nathan was a bit whiney and it was actually quite hot. Needless to say we forgot to take sunscreen and juice boxes! After the ordeal of looking at vegetables, we decided to find a small park and let the boys run off some steam.  Nathan has a great time running about with Simon and then ran about saying ‘hello’ to people and eventually made friends with a small boy, who was listening very intently at one point about how a stick can be a ‘lightsaber’ and all about how to be a ‘Jedi’! Oh man! Luke was hilarious. He seemed to find his running legs and was running about the park on a pathway. He would only go so far then turn about and run back.  A nice lady said hello to him and he waved at her! (A new emerging skill – yay!) Really I spoilt it by showing him the water and sand feature, where he promptly sat in the water and got very wet and sandy. But he had a wonderful time and even fell asleep in the car on the way home!

 Way to go Lukey!

Rx

Posted by: 15specialneeds | April 27, 2010

Fun…

Hi Dear Ones,

I was asked a question last week by a new acquaintance and it has really bugged me. She asked me ‘what did I do for fun’? Mmmm! Well, playing with my children is quite fun, going to the gym – is that fun?  Going out to dinner is fun for me! I have considered myself a happy and fun person for the most part, but I did wonder if I had kinda lost something, when I gained a special needs child. Have I lost my spontaneity? Smile? Laughter? I know that there is an element of grieving that we moms are supposed to go through, knowing that your child is not going to be like your others, and the ideology that you were sent this ‘special angel from God’ – was because you were special and would somehow cope, (and you do – but not well at times!) Then there is the guilt that somehow you are responsible for this situation – ’cause you just wanted that little bit ‘more’. It sucks!

However, I have wondered if the fretting over therapies, thinking about the future, the ‘what if’s’ seem unending, the biggest one of all is will my Lukey have a seizure one day and possibly leave this world, have they taken their toll on my ‘fun’ factor? Keeping it in perspective, I do not think about these things all the time, but they hover in an etherial zone! So how do I  just let it all go?

Well, I can chose to let this get me down and look miserable for the rest of my life, or I can take a big ‘chill pill’ get on with it and do it with a smile on my face. Funnily enough, I feel that I have some how moved on emotionally. I cannot cure my child, I am not his therapist, but I am the best one to fight on his behalf and enjoy all the things that he is doing, just love, smile and tickle him, now that is really fun!

Simon and Me at my 40th 'Pricilla Queen of the Desert' Party

Rxx

Posted by: 15specialneeds | April 25, 2010

At the park…

Hi Dear Ones,

Well today I took Luke to the park to celebrate our friend Eva’s third birthday party. We have been house bound for a great deal of the week as he had a temperature and now a nasty cough and cold. But as it was at a park – and we were house crazy, off we went at 10.30am.  When nearly there, I realised I had forgotten the nappy bag, his juice and toy for him to play with! Great!

It was a sweet little park and he was so great! He hopped out of his stroller and we walked about the park and played on the slide for a while. Then lo and behold a couple came into the park pushing their little boy in a ride on car like his. Oh No!

Fortunately for us, the lovely couple let Luke take over the car and I got to push him about the park until the family needed their car back. Once gone, Luke decided that it was definitely time to go home and stood at the gate waiting for me. Oh well, I did not get time to have a conversation with anyone, but I enjoyed being out with Luke.  He seems very responsive and making some great eye contact this week. I feel a real sense of happiness with him and his progress.

Looks like we may be therapy free for the earlier part of this week – yay! I think we will go and buy some flowers to dig into the garden and look at dogs in the doggy hotel!

Love Rxx

PS: I watched Clint Eastwood in ‘Gran Torino’ last week – I thought it was brilliant.

Posted by: 15specialneeds | April 21, 2010

In a circle…

Hi Dear Ones,

What I find so fascinating about Luke is wondering what he likes and dislikes and how he achieves getting what he wants. Needless to say given his lack of verbal communication skills, he seems to be able to communicate very well considering he also cannot gesture or point to anything! I get him coming along to me and taking my hand. then dragging me me to what he wants. 

For a long time we have been obsessed with jumping on the trampoline, with me of course, which is okay for me most of the time – but every now and again I feel a little motion sickness. He insists on backing up into me so that we can jump together with me pinning his body with my thighs (perhaps I am onto a new fitness regime) and he loves it! Then Nathan wants a turn!

Well the trampoline seems to be on back burner at the moment and he is more interested in being pushed in his little car  – again, (the best 50 bucks I have ever spent on him)! It seemed not long ago that we would walk all about the place with him in it, including Stanford shopping mall and park. He seemed happier in the car as opposed to his stroller.  Anyway, we seemed to get to a point that he started to get agitated and when we walked in it and I would often find myself down the road carrying him home and pushing the darn thing. Or he would be standing up trying to do some sort of acrobatic moves!

Anyway, tentatively, I have been taking him up and down the road in his car and he seems happy to sit and stand and be content. When I tried to put him on the trampoline he was not happy and refused to go on!  I am hoping the he doesn’t grow too much, as he will not be able to fit into his car for much longer – given it is a bit of a squeeze as it is!

Rx

Posted by: 15specialneeds | April 19, 2010

Getting on a roll…

Hi Dear Ones…

Well I am trying to get out of the landslide of life, and get back on track in writing again! As my Mum used to tell us growing up ‘if you haven’t got anything nice to say, then don’t say it’ which is really great advice in all situations. So for me, writing is a bit the same way,  if it’s all negative, don’t write it! Personally I think if you can’t say something nice – then be vague!

So I guess for Luke , I felt that the beginning of the year was really tough, in that I did not seen any progress of any kind. However, in saying that, we started the year with an ear infection, went on to having bouts of stomach and ‘bum’ bugs, then a trip home to the UK where neither of us slept. March seemed like an endless rushing about for one evaluation or another  and then to hospital for the ABR procedure, then it was a cooling off period to get back on track.

So in a positive frame of mind, I think perhaps that lack of progress, means that he has had a big growth spurt, as I did seem to find myself in Target quite often having to buy him a new wardrobe of clothes! He is in size age 3, and he is getting very tall and lean. He is really loosing that baby fat and looking like a real little chap!  And really making no progress is not like regressing -which he definitely is not !

He does seem to be changing. He is making better eye contact, wants to be played with (mostly by me – but hey!) The need to chew and play with spinning toys seems to be slowing down and he does not seek out the sensory toys too much – if at all on some days.  He appears to be discovering he can wave his arms about and we think that he is waving to us at times, especially when we go and get him from his cot in the morning.  This is a big step in the direction of gesturing.

Last Wednesday, he babbled so much – I could not believe it, and yesterday while jumping on the trampoline with him and singing the ‘Alphabet’ song, it seems like he was singing it as well in his own little way of course! I have decided to put all the ‘special needs’ reading aside for a while and enjoy reading ‘normal’ stuff again. Recently, I have read the new Alexander McCall Smith’s book from the No 1. Detective Ladies Agency , ‘Tea Time for the Traditionally Built’ (whole series is wonderful, I would cry when I finished a book because it was so fab, and he totally nails the argument that men can ‘write’ women!) The story makes two wonderful points. One, women are not meant to be in the homes all day by themselves, they are meant to have other female company with whom they can chat – agree! Secondly, you cannot ‘worry’ over things where you ultimately have no control, you can only provide a warm and loving environment for the present. Very true. When I look at Luke and start to worry about what the future holds and if he will be our ‘forever’ child, then see this happy, content, beautiful child I feel very happy and privileged to be his mum, just like I do with all my children.

Nathan’s new adventure…

Nathan started school with Rebecca last week (April 12th) and he did pretty great. I seem to have children that just love being at home and do not like too much change to their routine. We had tears as we got to school, but I was able to walk him to the class and leave him tearfully with his teacher Miss Anita. Thank goodness I don’t have screaming or kicking or, refusing to get dressed. Phew

He is really happy to see me when I collect him, and I know that it is a very long day for him as he was used to finishing school at 12noon and now it is 3.30pm. I do feel a little guilty over this – but I certainly feel more relaxed in my core, as my day ends a little later and I get quite a lot done while Luke is having a nap, and this last week the fun stuff I have been doing is TAX and PAPERWORK!

I was half expecting Luke to stop his naps just as Nathan went to school…but that is another story!

Rx

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