Special Needs Parenting Information

This page is to be used for information & news for parents and parents of disabled children. Further useful information may be found through our links page.

 

Home Visits

If a parent prefers to discuss or meet at their own home this can be offered on a limited basis. Support can be offered on a one-to-one basis for Hospital appointments, Common Assessment Framework meetings, CAMHS meetings, etc.

Support groups

Our support groups meet in the evenings in Cheadle & Leek we meet once a month at the Meadow Special School. Parents are welcome to drop in for a chat, information sharing and to meet with other parents.

In Biddulph Staffordshire Children Centre and North Staffs Cares run a support group once a month. » Support Group/Biddulph

Contact a Family & Making Contact

Contact a Family is a national organisation providing support, advice and information for families with disabled children. It has developed a web site, www.makingcontact.org, to enable families with disabled children to get in touch with each other over the Web, and across the world. Parents and family members visiting the site can see immediately if other families affected by the same condition are registered, and can register their own details for free. Initially, all details are kept confidential, with emails routed through the site, until eventually families choose to correspond directly or not to continue. MakingContact.org has over 5000 members.

A token fee of £5 per annum is charged once families start to correspond – partly to deter nuisance users, and partly to stop children registering as discussions are not monitored. Adults wishing to discuss their own disability can also register on the site.

Little Borrowers Toy Library with Sensory Equipment

We have a Toy Library with some NEW sensory equipment that you can hire out. If you interested please come along to one of the support group to look at the catalogue, or phone the office for more details. Below is some photos which you can look at.

Tactile Set                                           Turtle Seat

UV Sensory tub                                   Sparkle Alphabet Letters & Shapers

Large Bubble Mirror                            Speech & Language Hand Puppets

Tactile Sensory Tub                              Jelly Light

Large Butterfly Mirror  Mat                    Feelie Sensory Tub

Parents Story (1 of 4) - A Learning Experience

Living with a disabled child, whatever the disability, makes life more complicated, but it can also be a learning experience. Last year I was struggling to accept Richard’s autism as part of our family life and began to almost resent the difficulties it caused. We visited several High Schools making me think more about Richard’s future and his disability. I felt stressed and burdened with the decisions we had to make. I was fearful that a wrong decision would ruin his life as he moves into secondary education. I was juggling a part-time job, family responsibilities and having to deal with Richard’s disruptive behaviour at school. I felt like I was drowning.

Then after reaching an all-time low, I decided that I had to make a change to my life. I did something I dreaded doing- I asked for help. I was referred to Social Services and after a while, I was given a social worker to assess our needs as a family. In the meantime I visited CAMHS and had the opportunity to discuss my true feelings without feeling guilty. She advised me on steps that I could take to improve Richard’s behaviour at home. The results were immediate. We introduced a firm routine for every morning and every evening. Richard’s outbursts reduced greatly. I realised these outbursts caused extra stress in our home. It became easier to take Richard out. I attended courses on how to deal with undesirable behaviour. I learnt not to give myself such a hard time, that every time he had an incident it was because of his autism not that I was a bad mother. I learnt to set realistic targets and to only worry about the important issues. And one of the most useful things that I learnt was to “stop, look and listen” when dealing with Richard’s behaviour. When you catch him cutting his pyjamas up, it was better not to fly off the handle, but to stop and assess the situation, and talk to him. When I spoke to him, he wanted short summer pyjamas not long ones, so when I found him his summer pyjamas he was happy and I was calm.

What have we learnt this year? I have learnt to accept help and now we receive DLA and Carer’s allowance. Our social worker isn’t scary; she is the loveliest person and has helped us to obtain 5 hours of direct payments. This means we employ a helper who takes Richard out to the cinema or bowling and will help him to be more independent. This last year we have discovered a new joy in family life. I have fallen in love with my children all over again. By making changes in our home and by accepting help we have become closer as a family. This resulted in me deciding to finish working and to concentrate on our home and children.

You’re probably wondering why I’ve talked about me more than my son. I wanted to encourage you, as a parent, that you are not alone in your concerns. I want to encourage you to ask for help if you need it or get a babysitter in if you need a break. Join a parent group and talk to other parents, it can help relieve stress and you can learn tips from other parents. Living with a disabled child makes life more complicated but it’s also full of joy and constant surprises.

Parents Story (2 of 5)

Hi my name is Sarah and I have a son who is 2 years old. He was born 3 weeks early and when he was born he was very blue and was struggling to breathe. I had to keep him warm, when he started crying I noticed he had a very large cleft palate, I had a feeling he did due to the shape of his nose. Your probably wondering how I could tell just by the shape of his nose well that was easy, cleft palate runs in my family. Most of us look alike and have the some shaped nose. I told the midwife who arranged for a specialist nurse to come and see us. Billy was transferred to the special care baby unit. He stayed for 9 days due to his breathing and feeding. Later I was to find out what caused his breathing problems. A nurse came to see me from East Grinsted hospital about Billy's cleft palate and to show me how to feed him. I had to use a squeeze bottle as he couldn't suck- this used to take over an hour and Billy would get very tired so had to finish the milk through a nasogastric tube.

The nurse also said to me that Billy had Pierre Robin. I didn't take much notice of what she said all I remember is her asking me if it was detected on a scan, and I said no. I had to keep Billy laying on his side with a cushion called angels and not to keep him laying on his back for more than 10 minutes.

When Billy was 3 weeks old we moved up here and was referred to Manchester. A nurse came to see us I asked her what was Pierre Robin she said its condition when a child is born with a cleft palate, a very small chin, a narrow airway and no tongue muscles which cause the tongue to fall back in in our case caused Billy's breathing problems. I was told he should grow out of it by the age of 2. I told the nurse I was worried because a few times Billy struggled to breathe and turned blue. He was also not putting on any weight. So it was suggested that Billy be fed by bottle and nasogastric tube with high energy milk. He was put on an apnoea monitor so I knew when he stopped breathing, I was shown resuscitation just in case and had open access to hospital. We were also referred to the genetics hospital in Manchester as there is a strong family history of cleft palate, which is not known elsewhere as far as I am aware. A few months ago we got a family diagnosis of having non-ocular sticker syndrome. This is a genetic and Hereditary Condition this is based on the Pierre Robin with cleft palate. A large tongue and very small lower jaw which is what Billy was born with, also it is possible that Billy could suffer hearing loss and may need grommets. He will need a hearing test every six months. t is also possible that we may both suffer from arthritis which is all connected to the non-ocular sticker syndrome.

At a year old I got a date for Billy's op I was so relieved, because now maybe his breathing and control of his tongue will be sorted. After Billy had been in theatre for about half an hour the surgeon came to see me with bad news.
They couldn't incubate him due to his tongue falling back and narrow airways they tried putting different tubes down but found it would be to dangerous to operate they will try again in 6 weeks. 6 weeks later we were back in Manchester, they still couldn't incubate him.

Billy was 2 in April, and on the 20th May we went back to Manchester for his op. The following day Billy went down to theatre and put to sleep, fingers crossed they could incubate him. An hour later a nurse came to see me they had incubated him what a relief. A while later I went to see Billy in recovery the op was a success, he had a tube up his nose and was struggling to breathe. Billy was put on the high dependency unit for the night due to him breathing, 6 days later we came home.

Billy still has breathing problems which he should grow out of but it will take time. Billy copes very well and is very active and a happy child. We still have a long way to go with the genetics and Billy needs on going speech therapy and needs to learn to suck properly.

Parents Story (3 of 5)

My name is Tracy and my son is Matthew. He’s nearly 11 years old & the middle child. His older brother is 15yrs old and his younger brother is 8yrs old. Matthew has Dyspraxia and is Dyslexic. We have already come on a long journey over this time but I would like just to share some of this with you all. When Mat was a baby as his mum I know there was something different about him. He wouldn’t like to be held and soon as he finished his feed ( I breast fed him) he would push away from me this I found quite hard as this time with my other son was so special and I took it as a rejection. He was a thumb sucker and would often be in his own little world not interacting with the rest of the family. His milestones were late and he was very quiet.

When he started school it soon came apparent that he was struggling to keep up with his peers. In year 1 he had an I.E.P and was put on to Action so he got some extra support in class. He was very happy at school and did start to mixed well. But by year 4 his self esteem was very low as he was aware of his lack of abilities in class. He would make comments like “I’m thick” This frustrated him and his anger would be bottled up at school then would burst out at me sometime he would just charge at me. At home things were no better. Home work always ended in tears (either his/mine or both it was becoming more of a strain on the whole family.

After many talks to his teacher she did agree to put him onto Action plus then the Sens came in and assessed him. I can still remember the shock when I heard the word ‘Dyspraxia’ I was all ready thinking Dyslexia (yes we all know about that) but Dyspraxia what was this? I went straight home and got on the computer so I could learn all about this new word but soon as I read up it all made sense-his lack of bonding, dislike of loud noises, his night terrors, bed wetting, no comprehension of time e.g. morning/afternoon, day, week the list goes on for Matt it really helped to know that he was not thick and there was a name for all these things in his life that he struggled with. It has not been easy to get to this point but with pester power and a lot of research we have come on so well. He now likes cuddles and has a really good set of friends at school which will help him to make that transition to high school. We have support with the bed wetting and he is now having speech and language therapy. And he goes to a dyslexic centre once a week for a term and spends 2 hours with specialist teachers which has brought him on so much. We get Disability Living Allowance and have had 2 payments from The Family Fund (a washing machine and a laptop ) We still have issues over home work but at the end of the day as long as he is happy then that’s all that matters to me. I hope this has given an insight into this area and if you need help it is out there.

Parents Story (4 of 5)

My name is Sarah and I would like to tell you about my little girl Megan, she is nearly 7 years old and we live with Tim (Megan's Dad) and Sydney (Megan's Brother) who is 19 months old.

Megan was born (full term) weighing just 4lbs and 15ozs, she was so tiny that her baby grows and nappies just hung off her frail little body. Just hours after her delivery she suffered a fit and turned blue, she was taken down to the neo-natal unit where she spent her first week. That's when we found out that she had a rare chromosome disorder written as "del 13 (q31.2)(q32) which means that part of her 13th chromosome is missing. The specialist hadn't seen this before and the prognosis was that they didn't know if she would be able to eat, walk or talk properly. How do you bring a perfect, gorgeous looking baby home while your heart is breaking because there's something wrong?

As the months passed she started to gain weight (very slowly) and she did start hitting the small milestones-smiling, holding her head up and even eating solids! Then her development started to slow down-she didn't cut a tooth until she was one, she started to walk when she was two and there was no sign of any words. When she started nursery she used to bite other children out of frustration of not being understood, that's when she started Speech and Language Therapy. Potty training never worked and when she started mainstream school she still had accidents every single day, that's when we became aware of her other problems, she couldn't concentrate or communicate with her peers or teacher so the SENCO teacher was introduced to us.

Megan was issued with a statement of Special Educational Needs in October, it has taken a long and hard time to gain as so many professionals are involved with her but at least she is getting all of the help that she needs. The school nurse has set up a care plan so that she is taken to the toilet every hour and changed when necessary, so those little accidents aren't a problem anymore.

We now receive Disability Living Allowance and Cares Allowance because Megan has no sense of danger on roads, or strangers or dangerous situations and because of her global development delay she has to be supervised around the clock (even at night because she wakes most nights).

Despite all of her problems, Megan is a very happy little girl who had brought a whole new meaning to the word love to us; she touches every bodies life who she meets with her buddy personality. Most of all we love her and we wouldn't change a single thing about her even if we could and we know that her prognosis isn't good so everything that she achieves is a bonus.

Parents Story (5 of 5)

Hi, my name is Sarah my husband is called Keith, and we have two children, Daniel who is 10 and Rebecca who is 7 and who has Down's syndrome. It was quite a shock when Becky was born as having a child with a disability was one of those things that you think will only happen to someone else. Although I did not know she had Down's syndrome until she was born I was worried about how the pregnancy was progressing as she didn't move much and was very small. In the end the hospital decided to induce me 2 weeks early. As soon as I saw Becky I thought she looked like she might have Down's syndrome, but my husband didn't seem to notice and neither did the midwife so I tried to convince myself I was being silly. I then spent most of the night watching her thinking yes she has or no she hasn't. The next morning I asked one of the nurses to help me bath Becky. The nurse became concerned about Becky's muscle tone and reactions when being bathed. I knew then that she did have Down's syndrome and I felt like my whole world had just fell apart.

We then spent the next 10 days in hospital in the mother and baby unit as Becky blood sugar needed to stabilize and she were having problems feeding. To begin with I found it hard to bond with her as she was in an incubator and I wasn't looking after her, but once she had stabilized and I could start to care for her a strong bond did start to develop.

Over the next few years there have been many ups and downs. At times it can be quite heart breaking watching everyone else's child hitting all the milestone, but when she did achieve it made it all the more special. When Becky was small she went to Happy Hours nursery, but as she did not walk until she was 3, she couldn't join in the same way so I took her to a special needs nursery in Newcastle called Peter Pans. She also used to attend physio every fortnight with a group of children all with Down's syndrome. This was a lovely time for me as mixing with so many other families with disabled children I suddenly didn't feel so alone, and also met a lot of families who had to deal with a lot more problems than I did.

Although she enjoyed Peter Pans I felt mainstream school would be the best for her, and she started in the school nursery, although she wasn't toilet trained yet. Becky has come on so much during her time at school although it hasn't always been easy, especially once she started reception, but we always seemed to be able to work through most problems even if it meant several meetings with the school teachers. We worked really hard to get her toilet trained and also the school set up a year 6 buddy system for Becky to support her at lunchtimes and breaks, and this worked really well.

Just when I thought things might be settling down and we had overcome most problems at school we hit the worst nightmare of her little life. Becky had a small hole in her heart which they said would need correcting by keyhole surgery. She went into Birmingham Children's Hospital in the February half term when she was in year 1. All seemed to go well and she came out and had been at home for about 1 week when she suffered a bad reaction. She woke up about 5 am on the Fri morning saying she felt ill and then started to have what looked like a fit. We called 999 and when they came out her heart beat was only 20 beats a minute. They rushed her into hospital and while we were in A+E her heart stopped about 5 times, and I thought we had lost her, but in the end they did manage to stabilize her. Arrangements were made to transfer her to Birmingham Children's Hospital where she needed emergency open heart surgery. The surgeon said that it was the 1st time they had ever had this reaction to the keyhole surgery since they had started doing this procedure 5 years ago and they asked to record the operation so that they could learn why it had gone wrong.

We spent the next week in Birmingham Children's Hospital watching her slowly getting better and finally we were able to bring her home. The trauma of it all did affect her for a while after and she suffered terrible night terrors. I would just have to lie with her watching DVD's all night trying to comfort her. Since the operation though Becky has gone from strength to strength.

Although Becky has caused us a lot of worry, she has also brought us more joy than we would have ever thought possible when she was first born. She has such a lively and cheeky personality. She has managed to take part in most things that other children do and I was especially proud when she took part in a ballet and tap show which was on for 5 nights at Cheadle High School with Vivienne Shelly's dance class. We have been really proud again this week when she has started to be able to swim without armbands for a short period. This has come after about 2 years of lessons where I wondered if she would ever manage it.

Overall there have been some lows, but the highs definitely make it all worth while, and just to see her little smile makes my day.