Voices / Carol

Matthew was born on Easter Tuesday 1994, after a problematic labour. He was handed to me briefly before being whisked off to special care – we were told that he’d inhaled meconium but was breathing on his own and it was likely there would be no lasting effects.

At his six week hospital review, the Dr said he was floppy and wanted to run some tests. These initial tests came back negative, and Matthew’s paediatrician said he probably had some trauma from the birth but “he certainly seems very bright”.

At 3 months old, Matthew had a series of afebrile convulsions, which were terrifying. He was admitted to hospital, where the Dr felt he obviously had some brain damage. An MRI was arranged but no abnormalities detected. Further tests followed over the following years: chromosome analysis, skeletal survey, skin biopsy, 22q, Fragile X, MPS, Williams syndrome…with each test, I’d think maybe we’d find the answer, but each result came back negative.

Matthew was given a “diagnosis” of hypotonic cerebral palsy, severe speech and language delay and global developmental delay. He also has moderate hearing loss.

Matthew had portage from around 6 months old and started at a school for children with severe learning difficulties at age 2.5 years. By age 5 he was starting to say a few words, along with Makaton signing and we decided we’d like to try mainstream education for him. In January 2000 Matt started in mainstream school with 30 hours per week support.

His language came on in leaps and bounds, and for awhile there he seemed to be catching up, but Junior school saw him slipping further and further behind again, and we made the decision to transfer to MLD school for secondary.

When Matt was 13 his bloods were tested using a new test called CGH array. This identified that he has a microdeletion on his chromosomes at 17q21.31. Little is known as the deletion has only recently been discovered, but the other children identified seem to have similarities with Matt.

Matt is now 15 years old and is in Year 11 at Baycroft school. He loves his school, and his confidence has blossomed there. He is happy and sociable most of the time, although he does suffer from some anxieties and needs reassurance from time to time. He has moderate/severe learning difficulties.

Baycroft offers no post 16 options, so we are looking into suitable colleges. Matt is very clear that he would like to live independently in the future, although it is likely he will need support.

Following a lengthy complaint against Hampshire County Council, I was invited last year to form part of the working party looking at a new eligibility criteria for disabled children’s services. This led to me considering a change in my career, and in July I applied for the position of project worker/participation officer for Parent Voice in Fareham. I am pleased to say my application was successful and I started work last Monday!

On 4th November, our family have been invited to the launch of Contact-a-Family’s new report called “Our Family, Our Future” in the House of Lords. I’ve started a thread on the parents forum asking for your issues, in case I have the opportunity to raise them with any politicians! Please have a look now and leave your views.