One of the parents Wraparound supports has very kindly written this heartfelt blog for us about her experience with the professionals involved in her son’s life.
Until my eldest son was born, I was lucky enough to have very little experience of dealing with many professionals. I had never been in hospital, rarely visited the GP, had never needed social help, had an unblemished record at work and had the utmost confidence and trust that every professional I met was, like me; an expert in their own field who would do their best for the individual and family they were working with.
Having my son in 2011 opened my eyes.
At last count my son and I have since interacted with 25 medical teams, 8 hospitals, and 6 educational settings.
We have had some amazing relationships with professionals and I am indebted to these people who have helped improve our lives and my son’s outcomes. They offereda lifeline to us when we needed it and their names,and how they made us feel will not be forgotten.
- The friendly Osteopath who agreed that my new-born’sincessant screaming wasn`t “just colic” and who wrote supporting letters to try and help me get specialist referrals;
- The wonderful Doctor who suggested milk allergies may be the route of his pain and prescribed an alternative milk;
- The supportive Key Worker at nursery who saw a two-year-old with additional needs when no one else shared my concerns;
- The creative Speech and Language Therapist who visited a café with me, my newborn and my challenging three-year-old in tow because I didn’t feel I could leave the house with them both;
- The heeding Community Paediatrician who agreed that sons head size and shape needed further investigation and made a referral to Neurology;
- The knowledgeable Gastroenterologist who looked at my son’s symptoms as a whole,rather than just his specialist area,and first mentioned the importance of a genetics referral;
- The proactive School Nursery Teacher who raised concerns about Special Educational Needs just two days after meeting him;
- The amazing midwife who voluntarily emailed my employer on my behalf to explain why I was so distressed by my son’s diagnosis whilst I w
as pregnant with my second child;
- The inventive Audiologist who arranged for an image of his favourite Marvel superhero to be fitted inside his hearing aid to encourage him to wear it;
- The caring Occupational Therapist who identified significant sensory processing difficulties half an hour after meeting him after we battled for two years for an appointment.
However, we have encountered more‘not so positive’ experiences along our journey.
We have at times felt unsupported, fobbed off, unimportant, anxious, stressed, patronised, lied too and downright depressed by the words and behaviours of some of the professionals we have put our faith into. These feelings have also stayed with us and now affect how we feel about meeting new and unknown professionals. Each referral is a dread, a worry, something else to research, another appointment in a diary, something else to follow up, to remind someone about, to fight for.
Our attitude is now different. We are exhausted. We find it somewhat difficult to remain positive with our professional relationships having dealt with:
- The midwife who told us our brand new baby cried
- as he was spoiled and was held too much;
- The Doctor who wrote “Anxious Mother” across the top of my son’s medical notes in bold;
- The GP who offered antidepressants rather than listen to concerns about ourbaby’s incessant screaming;
- The Health Visitor who said “he just didn`t like being a baby and would be fine when he could walk” (he was 8 weeks old);
- The Paediatrician who told us to toughen up our parenting skills and adopt the super nanny approach to manage his demanding behaviour;
- The Nursery SENCO who decided he was a typically boisterous two-year-old and that he would grow out of biting and hitting (Diagnosed with Autism 6 months later);
- The Manager at work who announced I was having too much time off to take my son to his medical appointments, and who later had a say in making me redundant from my last well-paid job;
- The Headteacher who wrongly assured us that my son would have a place at his school due to him having Special Educational Needs;
- The Optician who, knowing his condition,lunged forward without warning to check his eyes and was unimpressed as we dealt with the subsequent meltdown;
- The Local Authority who took 18 months to finalise an Education Health Care Plan (EHCP);
- The Teacher who said ‘he is doing ok but you shouldn`t expect him to do as well as others his age’;
- The Doctors receptionist who demanded we keep quiet in the waiting room as theboy’s noises were annoying the older people;
- The School who arranged an annual review just 8 weeks afterthe EHCP wasfinalised, without any reasoning,and was adamant that this was correct procedure;
- The Headteacher who never returned my calls;
These experiences have led to some intense emotions for us; sadness, frustration, anger, anxiety, fear, exhaustion to name a few.
We understand that professionals are busy.
We are busy also with the constant juggling of a chaotic home life alone and a barrage of appointments which are often cancelled without our knowledge or on the last minute, referrals not being completed when requested, lengthy waits for services and therapies and appointments, managing a filing cabinet of assessments, work, life and on and on!
Parent Carers are the professionals who spend the most time with and know their child best.
- How do we strengthen our relationship with professionals to gain the best outcomes for our child?
- What is the best way to gain their support?
- How do we challenge when we feel we haven’t been listened too?
- What is the solution when we don`t agree with what we are told?
- How do we deal with a grievance?
We are desperate to be enlightened.