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