Wednesday, 14 March 2012

On moving forward.

We have certainly come very far in the last year. Looking back a year ago, at the start of Mr L's OT, I struggle to even remember how tough it was - somehow the brain blocks out the worst. The tantrums that we only see now and again on a very scaled down version was in full swing. There was almost no recognition of any abstract concepts like shapes and colours. The tiniest thing ticked him off. The isolation tent was in full use.We were so sleep deprived, I can hardly express how tired and totally exhausted we were (2 to 4 hours awake up to 5 nights a week). It was tough just to get to school and work and back, never mind potty training etc. Life was a huge struggle.

A year on and things have certainly changed a lot. He is fully potty trained, he is loving his school and can not wait for his weekly OT appointments. And lo and behold, I am almost scared to put it out there, but we are sleeping. At last after more than 4 and a half years. The last month has gone without one of L's classic SID kid total sleep failure nights.It is a huge thing in our lives! And I am so grateful, reading that a lot of SID kids only start sleeping through at about 6 - but we worked on it, believe me. We are still using Melatonin and rushing and compressing.

He is also learning his letters via letterland as the class proceeds (but have to mention that Mr C knows every single one of the alphabet) and although a lot of the time it is still difficult to get and hold his attention, we are certainly moving on towards better times. We have had a preliminary speech evaluation and in future we might have a stint of speech therapy. But we are moving full scale - to our target being sending them both to grade 1 at the same time at the same school. The alternatives just stress me out too much. To send him a year later (because we will not be able to hold back C who is at the moment testing a year ahead of age) to the same school has it's problems, to send him to a different school to catch up and later to the same school also has its issues. But both his OT , his current teacher and the head mistress of the school they will be attending next year for grade R(on the grounds of A's school) believes that a lot can happen in the next year and a half that could possibly just realize our dream of having him ready for main stream school on age.

O yes, it is indeed going well. He seem to progress in leaps, then stand still or even regress a bit, and then take another leap, rather than the steady development rate of our other kids. I know it is typical, but it both provides for huge stress and huge joy when achieving a new goal.


  1. Wow, what huge progress!
    Dont stress the colouring in, some kids just dont 'get' the whole colouring thing, Aaron is somewhere in between your boys, he only ever uses one colour and is not so great staying in the lines...
    So happy things are looking better for you guys!

  2. You are making great progress there. Can I tell you something. At Caitlyn's table in her class the one little boy colours in beautifully, but takes forever to get done (if he gets done). The other little boy next to him doesn't colour very well at all. not all kids are great at colouring I can tell you that!

    I learnt something rather interesting just a night or so ago. When kids easily get distracted and struggle with concentration putting them in the front of the class rather than the back is better. The reason is that when kids focus on the book on their desks it is close, then they look up at the board and it is further away taking the eyes a few seconds to adjust. Most ppl don't realise, but in kids who get easily distracted it has an effect. We've had to ask to put Bianca in the front of the class because she has a distraction, concentration and slight memory problem which we think may be as a result of the chemo she was on.

    1. Thanks for the onfo Lea - will remeber that. Atm they do nto really have a front of class but we did on the OT's recommendation, ask the school to moove the boys to different tables ( they sit 3/4 kids at one round table) and it has helped not being with his brother. He now has two cute girls as table mates.

  3. I'm so happy for you all, that he have made such huge progress. So, so happy for you all.

  4. One foot in front of the happy to hear how far you've all come in the last year!

  5. I'm right there with you on this one Cat. Al.ex is doing really well, but is about a year behind in his fine motor capabilities and attention span. (In fact, your photo of L's coloring is quite advanced compared to Al.ex!) His twin Car.sten like your C, is also about a year ahead and very verbal. So we are struggling with the same questions of "which school" and "how" for both of them. I really want them to stay at the same grade level even if they are not in the same classes, or possibly even the same school. In California they are introducing a new "Transitional Kindergarten" class (Pre-K) meant for young 5 year olds as part of a 2 year Kindergarten program. We will be doing that for Car.sten but not yet sure if Al.ex will get another year of preschool and then enter reg. Kindergarten.

    The decisions to make for them as individuals and as a unit are very very challenging. You will find the right mix. I wish you luck with your decisions too. :-)

    1. Wow my friend, haven't heard from you in years! Thanks! Wishing you luck too

  6. I wouldn't read too much into the colouring in thing. yes, it prob has a little to do with it, but if i compare the kids in Polly's class - they are all worlds apart and only a y ear difference. So don't panic too much.

    What a divine post. So great to read how far you have come and how you have all overcome the challenges of the past year. I have just sent Julia over to read you - did you read her post of today/yesterday? I really think that you have been an amazing support/friend for her.

    Yay for your marvellous child who is responding so well. And yay to you for persevering and never giving up.

    Lots of love xxx

  7. You know, I am so glad that you blog about L’s issues and the progress that he’s making. It is absolutely amazing and inspires and fills me with so much hope at a time when I really need it.

    I also try not to compare but sometimes I just can’t help myself. I think it must be even harder for you not to compare because the differences between your two are constantly “in your face” so to speak. Don’t be too hard on yourself about it. The other day I cried at my sons school when I saw his drawings - they look exactly like L's btw. All that I could see was how much work was needed to get him on par with his peers. But you know what? It will get better.
    Afterwards when I spoke to my husband about it, he reminded me of Child 1’s drawings at that age. He had just been diagnosed with ADHD (co-incidentally they were both diagnosed with their respective issues at 4.5years) and he could not even draw a picture of himself or colour in between the lines. His drawings also looked exactly L’s drawings are looking. After OT and various therapies he is a FANTASTIC artist and I’m really not being biased. I’m going to ask him if I can take pics of his artwork for my blog. I love his work so much that I want to put it on canvas and hang it in my home.
    Hang in there, it will come right. Onwards and upwards and all that.


  8. I am so happy for you that things are progressing well. You and your DH have really handled all this well. Yay on sleeping at night. I will continue to pray for his progress.


  9. Any movement forward is something to celebrate :)

    Those pics remind me so much of my two!! Cameron was always neat and his colouring was so perfect from very early on. Kiara on the other hand was all over the place. I think it was only last year she actually started using different colours (on her own) and colouring neatly. It is also mirrors their personalities :)

    Hugs Cat!!

  10. Oh I love to read this. He has come a long way - well done to all of you and I don't know how you didn't sleep for so long. Don't you want to slap the people with kids who slept through at 12 weeks? *ahem* :)

    Also, this has nothing really to do with it BUT I STILL can't colour inside the lines and I excelled academically (Julia told me I'd have gone to OT if these things were the rage 30 years ago). Teehee.

    I would think of L as a genius who thinks outside the box. How's that for reframing? :)

    Can't WAIT to see you in April - seriously!

  11. My son is only 2 and I already struggle with comparing him to others. Heaven help me in the next few years! Just know that you have and are doing the best thing for your son and helping him to function in the world as an adult. I think the developmental years are the hardest to get through (I can't be 100% certain yet as I have just begun our journey). Truth is most of our children will be fully functioning adults with their own merits and achievements.

    I can only relate partially to your considerations regarding schools. I have thought these things too but need to wait till my son is 4 to make decisions. I do not know all your sons issues but what I have also learnt is that it is important to integrate them into 'normal' schools. But with that comes the reality of whether they will cope and be held back and I'm sure for you, you do not want your one son to feel so isolated!

    Strength to you in your decisions!

  12. So glad to hear he continues to move in the right direction!! So much progress already!!

  13. Glad to hear of such good progress for your little man L. Holding thumbs they can both go to school at the same time.

  14. Sounds like great progress! :-)

    I think it's hard enough not to compare your child to others...I can imagine it's even harder when he's one of a set of twins.

  15. Having a twin (especially one who's ahead) would def make this journey harder. But I must say, I think both did a good job with their coloring!


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