Friday, July 25, 2008

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

12 comments:

Jenn Sellmann said...

Hi Lis,
It's great to hear the updates on the boys. It must be so hard for you both to have all of that spelled out to you all at once, even if it is nothing new. I so wish we were there so I could be of some support to you - even if it was someone to scream at!!
Love you heaps, and again, really appreaiate the updates!
Love always
Jenn

Lisa - Mum to Mitch & Harry said...

Thanks Jenn :-)
No matter how far apart we live I know that you are always there for me and I hope you know I am here for you too.

Hugs,
Lisa

Aprilyn said...

Lisa,
(((HUGS)))
I'm also glad to hear the updates. I know it can't be easy to hear all of that at once but it seems like you have a great team! Hang in there. You are strong and you're a wonderful Mum. I'll be praying for you and the boys.

Lisa - Mum to Mitch & Harry said...

Dear Aprilyn,
Thank you for your ongoing support and understanding.

Hugs,
Lisa

Jodi Devine said...

I don't know where to start - except to say i UNDERSTAND!!!!!!!!!!!! Thomas's 3yr corrected assessment at RPA was reassuring at the time and we felt that despite his language delay (which has come out severe receptive and mild expressive, which, given his hearing loss, I thought would have been the reverse)everything was going okay. The paed. at RPA and the psychologist were more concerned with his motor skills and so we have tapped back into OT. I was shocked to open up a carer's allowance package to see the paed. had filled in the boxes the title of global developmental delay.... I know kids who have this label and I so did not think Thomas ever would. I feel like he is this ball being batted between everyone and no one is letting him be just him. But then agai, like you, I acknolwedge it and somehow find the strength to pick myself up and deal with it.

It mus be wonderful, however, to have a great team assessing the boys. They are very luck tou have you both. Imagine what their lived would be like if their parents were unable to arrange all this intervention.... and if their parents, like some, flatly did not care. Nust be the reason we got such wonderful, happy, vibrant and outgoing boys. Because we care and will make their lives as every bit fulfilling as we can.

Love to you all!

Jodi
xxxxxxxxxxxx

Lisa - Mum to Mitch & Harry said...

Thank you Jodi for your beautiful words. Our three little mighty mice may have challenges to face, but on personality and love of life they sure excel!

Hugs,
Lisa

RhondaLue said...

Lisa,

I'm glad you had such a thorough evaluation though sorry it was difficult news to swallow. All that doesn't change how wonderful your sweet boys are and they are so lucky to have such diligent, loving parents to guide them through this life.

Thinking of you,
Rhonda (Benji's mom)

Lisa - Mum to Mitch & Harry said...

Thanks Rhonda.
Like you say it doesn't change the beautiful little boys they are...
Thank you for your kindness and support.
Hugs,
Lisa

Toni said...

Hugs Lisa....
It must be hard to have it all spelt out for you, but in the end the you have 2 beautiful wonderful caring boys...
Toni

Lisa - Mum to Mitch & Harry said...

Thank you Toni,
Hugs,
Lisa

lusi said...

Hi there Lisa :)
We havejust gone through a series of tests like that with our son (he is autistic) and it is hard to hear sometimes. I hope you continue to take it all in your stride and you seem to have lots of support which is great. Good on you mum!
Hang in there and God's blessings for the journey (your kids are gorgeous by the way!)
Lusi x

Lisa - Mum to Mitch and Harry said...

Thank you Lusi :-)
Sometimes hanging in there is all we can do...

Hugs,
Lisa