Government cutting to the heart of child care

An Ennis-based single mother-of-two who is caring for her daughter with multiple special needs has criticised the Government for targeting vulnerable children as part of education and health cuts.

 

Acknowledging the country is in the grips of one of the worst economic recessions, Clare Boylan strongly believes all children with special needs should be exempt from Government cuts.

Born in Clondalkin, Clare’s mother and father moved to Clare in 1991 when she was 13 years of age. Clare is the mother of Joshua (8) and Courtney (7), who has special needs. She explained there is a big difference between the level of care needed for a child with special needs and a typically developing child.

“A typically developing child crawls and walks at the appropriate time and can do things for themselves. Courtney, for example, doesn’t need a lot of sleep. I try and keep her to a routine of putting her to bed at 8pm or 8.30pm. I would be going to bed at 10.30 or 11pm and Courtney could still be awake and she would be up at 5.30 or 6am in the morning.

“I understand the country is gone into a recession. However, the Government seem to be targeting special needs children. It is not because my child has special needs. There are other children out there who are worse.

“It is not fair on these children. Some children need full-time carers. It is not fair on their parents,” Clare said.

“Children with special needs need extra. Cutting SNA, classroom assistants and resource hours is unfair to children.”

Courtney was diagnosed with sensory processing disorder and dyspraxia in the Sunflower Clinic in Castletroy, Limerick last year, while the Health Service Executive diagnosed her with Developmental Delay Disorder.

Clare knew Courtney had problems since she was very young as she didn’t walk until she was three years of age and never crawled.

Using Joshua, who is a year older, as a barometer, Clare could see Courtney couldn’t reach a lot of the developmental milestones compared to her older brother.

“Courtney needed a lot of help when she was a young child. She couldn’t hold a spoon to feed herself. Most children can ride a tricycle when they are three years of age. Courtney still can’t ride a bicycle. These are things that a mother would notice.

“I was very concerned about this. She started playschool in Ennis when she was three-and-a-half. Most children would be picking up crayons and colouring or scribbling. Courtney didn’t have the proper grip,” she said.

After spending about a year in the playschool, Courtney went to Ennis National School where a teacher voiced concerns about her development, which came as no surprise to her mother.

Having completed some assessments in the Clare Early Intervention Service (CEIS), Clare recalled it was hard to come up with a definite, specific diagnosis, which prompted a referral to the Sunflower Clinic.
While Courtney did receive physiotherapy and occupational therapy from the public community service, Clare felt her daughter needed a lot more therapy.

In February 2011, Clare was passing the Caring for Carers office in Carmody Street one morning when she dropped in in the hope someone might be able to assist her.

She met development officer, Susan Hogan, who she describes as an “angel from heaven”. Ms Hogan put her in touch with Clare Crusaders who proved to be of great assistance by providing vital speech and language and occupational therapy for her daughter and helped her to fill up forms for entitlements.

Courtney’s application for Domicilliary Care Allowance (DCA) was turned down on three occasions before she was eventually successful on appeal thanks to the assistance of Caring for Carers’ administration staff.

When DCA was eventually paid, Clare used the money to pay for her daughter’s one-to-one swimming and horse riding lessons, which she wouldn’t have been able to afford previously.

Clare praised the teachers in Ennis National School for all the support it has provided Courtney through the Reading and Recovery Programme and resource hours.

Clare’s day starts at 6.45am. She has toast and a cup of tea and gets Courtney up at 7am. Her daughter needs help getting washed and brushing her teeth. She has to give her breakfast and pack her schoolbag because she can’t do it herself. She can’t put on shoes because she can’t visualise the difference between right and left.

When her two children are dropped off at Ennis National School, Clare completes shopping and housework. Courtney goes to the homework club where she is supervised because trying to do her homework at home was taking two and a half to three hours.

At dinnertime, Clare has to watch what way her daughter is using the knife and fork because she could put the fork too far back in her mouth and might choke.

“I get her ready for bed and she could still be awake at 11.30 pm. It is a difficult day,” she said.
If her daughter sees tags on new clothes, she will not put them on because of the sensation provided by new garments until they are washed and worn a few times.

Any kind of high-pitched noise, like a hoover, or the siren on a fire engine or ambulance would distress her.

Clare has never availed of respite services as she got used to the additional care Courtney needed from a young age.

While her daughter is making some progress, it can sometimes be sporadic as Clare feels she can have three good days followed by four bad ones.

“You can generally tell when she gets up in the morning what her day is going to be like. It varies a lot. If she only had dsypraxia, it wouldn’t be as tough. With sensory processing disorder as well, it makes it all the more difficult,” she said.

While Courtney gets on well with her friends at school, Clare admits she is not great at socialising with children she doesn’t know.

She recommends Caring for Carers to anyone who is caring for a child, a person with a disability or an elderly person.

“Anyone who is having difficulty accessing services should call into Caring for Carers, who give great advice. I didn’t know where to go or who to go to. You would fill in forms when you would meet a physiotherapist. A month later, you might meet a different physiotherapist and have to fill in the forms all over again.
Switching from one physio to the next is madness.

“There is a lot of paperwork that could be simplified. All this information should be put in under the child’s PPS number where it should be easily accessible at the touch of a button on a computer,” she added.
She would love to see a branch of the Dxphrayia Association being set up in Clare.