A medical update on the boys...

Today we had a team meeting with the hospital child development unit team. Attending were the physio, OT, speech, paediatrician, kindy director and a paed reg. Each of the team members who have treated the boys over the past 12 months presented their findings on the boys and their views of ongoing needs.

Speech - both boys have severe receptive and expressive language disorders. They cover this by deflecting the conversation when they can't understand and as a consequence most people don't realise the depth of their language problem. The speech therapist also commented that they have areas of very good knowledge and understanding, but the basic building blocks of understanding and expressing themselves are disordered. She stated this will be a lifelong problem - that they will learn, but that this will take a great deal of effort on their part.

OT - she noted that both boys are extremely busy and still struggle to focus on activities. Harrison in particular is easily distracted and has difficulty working out the "voice of authority" in the room. She discussed their sensory issues and stated that they have significant sensory problems at times which typically manifest with meltdowns. She noted that their poor muscle tone means they tire very easily and that Mitchell can only cope with standing in one place for 5 or 10 minutes. Their fine motor skills are poor and they struggle with holding a pen or any activities which invole dexterous movements. She also commented that both boys have difficulty with motor planning and as a consequence tend to struggle with physical activities. She stated that this is a lifelong problem and that as they progress through school they will need a lot of support and parental involvement. On the positive side she commented on how far the boys have come with learning to sit for activities and follow instructions.

Physio - she noted that both boys have very low tone and poor core strength which means that any gross or fine motor activity takes a lot of effort. She voiced concerns that they have not significantly improved their muscle strength, gait or general movement over the past 12 months. Although she acknowledged that there has been a negative finding for Cerebral Palsy, she is of the belief that their problems are very similar to those with Ataxic CP and she feels this diagnosis may be made later. She stated that these problems are lifelong and will become more self evident as the boys grow older (in comparison to their peers).

Paed - acknowledged all of the therapists' assessments, but stated that both boys present as very bright and personable. He discussed the possibility of ADD or ADHD and stated he would not diagnose these kind of problems at this young age - and that meds to control aspects of these disorders are not particularly effective in this young age group, with the side effects generally outweighing the benefits.

Kindy - the director of the kindergarten attended and told us that she has applied for additional support hours for the boys and she is endeavouring to get them into a session with a small group where they will be with neurotypical children and have additional support. She is also seeking government approval for the boys to attend an extra term of full time kindy (4 x 1/2 day sessions/ week). Usually children receive 4 terms of full time kindy - and she hopes for 5 or even 6 terms for the boys. She was very encouraging about the supports the kiindy can offer and they have a number of children with special needs who already attend the kindy in mainstream and special groups.

The conclusion is that the boys will be referred to NOVITA which offers OT/ Physio and special groups for children with disabilities. They are hoping that NOVITA can offer the boys (and us) extra support at no extra cost. Speech therapy will be provided by DECS (Department of Education and Community Services) and we can supplement this with private therapy if required. Once the boys are accepted by NOVITA then they will be discharged from the hospital's CDU. The paediatrician will continue to coordinate their care.

Sorry to be so clinical, but this is the best way for me to explain it. At the moment Kev and I feel totally overwhelmed. Its not that we have been told anything we didn't know, it's just to have it all spelled out in detail is confronting. We are so grateful for the care and concern the staff have shown our boys (and us). So now we just have to pick ourselves up and move forward. On a lighter not I came home and both boys insisted I join them in Harry's bed for a "triple cuddle" - kind of puts it all in perspective :-)

Lisa

Just for a laugh...

Love this clip which I found on YouTube.
For all the scrappers out there this one is for you :-)

Being a Mum...

It is now two years since my own dear Mum died. I miss her every day. Harry in particular talks about his Gran and he often asks to see photos of her. I don't think he completely understands at this stage, but he tells people he loves his Gran and she is in the sky and in our hearts. Mum often talked about her fear that the boys wouldn't remember her, but in my own way I am trying to create a memory for them of their Gran.

Thinking about my Mum got me thinking about my own experiences of being a Mum. And I realised that my mothering style is a reflection of everything that my Mum taught me. Sometimes I catch myself saying something and I have to smile, because I remember Mum saying the same things to me as a small child. Mum has been the single biggest influence in my life and I only hope that I can give my children the kind of childhood she gave me.

Family is so important to me. That is why I feel so blessed to have a close relationship with my family. I may not see everyone as often as I like or I may not keep in contact as often as I should, but they are often in my thoughts. I look at my beautiful boys learning about the world and sharing special times with their cousins and I am truly happy. These precious times my Mum would loved to have shared. And while there is sadness that she can't be here with us in a physical sense, I know that the life she helped create for me will continue to influence myself, Mitch & Harry and future generations.

Being a Mother is the most important thing in the world to me. And I thanks my beautiful Mum for showing me the way.

With much love,
Lisa

Feeding the cows and other great adventures...

Don't you just love these photos! Harry is clearly loving his first experience of feeding cows. And Mitch is sleeping through the entire process! This was taken a few weeks ago on my Uncle M's 60th birthday. We all went out for a beautiful meal and then afterwards headed back to Uncle M's and Auntie M's farm. The boys are still talking about it.

Each week sees another small step forward. Harry is trialling wearing underpants at night and he is very excited with being such a "big boy". It is not unusual for him to loudly announce to anyone that "now I do poos in toilet" - which I am sure thrills others no end. Both of the boys' speech is certainly improving and while they do have obvious difficulties with understanding, they really try hard to express themselves. Only over the past couple of months has Harry been able to really tell us what he wants without us taking forever with multiple guesses to work out what he is saying. And as a result he has become much more responsive to us and the meltdowns are far less frequent. Apart from that Mitch has taken to his glasses like a real trooper - which is great and he suddenly looks so grown up and serious.

The biggest news is that in less than 2 months both boys start early entry kindy. It is hard to believe that our little men are grwoing up so fast! I am sure they will love kindy. Mummy however may find it a bit of a challenge (grin). They will start off with 90 mins once a week for the last 5 weeks of term 3 and then will move into pre-entry. They are doing a extra term to aid in assessing what support they may need in the full time kindy setting. At this stage we are waiting for the team meeting and will take it from there.

Some of you may notice I am posting this at 3.15 am and wonder why I am not in bed like all sane people! Well unfortunately I can't seem to sleep since I started trying to get to bed earlier (lights off by 11.30pm). I am sure this is just my body's way of saying "hey you have knocked me about with all those late nights don't just think I am going to do what you want" (grin). Hopefully this will improve soon! Because I certainly need all the energy I can get running around after Mitch & Harry.

Sending lots of love to you all,
Lisa