Read the articles: A special take on life, June 4 and Something special, May 21

Your responses

It was so refreshing to have someone write so positively but also realistically about having a child with special needs. I didn't realise until now how much I want to say and discuss until now.

We have two children Sarah (seven) and Sophie (five). Sophie has a genetic syndrome (Smith Lemli-Opitz Syndrome) SLO, which means that she was born with a cleft palate, low muscle tone, pstosis, low birth weight and learning difficulties amongst other bits and pieces.

As you said yourself we have all been on a journey but hand on heart I can say that Sophie has enriched our lives and we feel so lucky to have her. Our house is filled with laughter and affection and we marvel at how she touches peoples lives and that so many people fall in love with her.

Don't get me wrong, we have our ups and downs and I now accept my blips as I call them when everything seems to get too much. Sophie is still reliant on gastrostomy feeding, no speech as such (using signalong) and learning difficulties etc. It is also very tiring as Sophie has the energy of a herd of elephants and is like a toddler as you have to watch her constantly and her sleep pattern is a mixed bag! However, the overall picture is great and the milestones she reaches are the best high you can receive. Rowena Shepherd

I enjoyed your column very much. My 15 year old son is autistic and attends a special school in North Wales. I have always found that, as a parent of a child with special needs, my best support has always been other parents (although a good and supportive school is a lifesaver) and so I started a parents' newsletter so that we could share ideas. One of the most popular spots in the newsletter was the Hints section where parents could write in with solutions for some of the everyday problems we all face. Like how to get your ill, hot, autistic child to take paracetamol when he clearly thinks you are trying to poison him (freeze it into a lolly or get paracetamol in suppository form were two of the suggestions). Sadly I had to give up the newsletter some time ago as I couldn't manage the workload any more but it was fun while it lasted.

Having a child is a life changing event; having an special needs child even more so. Thanks to my son, my life has taken paths I didn't even know existed and is much richer as a result. Debbie Goodsir-Evans

I read with great excitement and enthusiasm your article and can't wait for the next. As a British citizen living in Israel with an autistic child, my head didn't stop nodding at mentions of isolation and invisibility, needless to say very pertinent points. I struggle to come to terms with my son's disability but likewise feel blessed by his presence in the world. I know that my other children, Oliver's siblings have an added dimension to their lives that has made them compassionate and caring to a degree that is beyond their years. In a meeting with a child psychiatrist, who was keen to meet Oliver's siblings, my then, eight and a half year old daughter explained that having a brother like Oliver meant that she would always have a brother who was cute and innocent not like a "regular" brother who would be annoying in a way that only an eight year girl with an older able-bodied brother knows. Learning to look for the good is a lesson she taught me that day it's not always easy but the best bit of advice I've received so far. Nicki Ginat

I am the mother of Florence, 8, and William, 5, who was diagnosed with autistic spectrum disorder two and a half years ago. Like you, my husband and I feel completely blessed to have had the experience of living with William, and truly privileged to have been given the task of helping him negotiate the minefield of life in our 'neurotypical' world. Without wanting to gush, he is the most loving, affectionate, hilarious child you can imagine, yet had Lambeth (our borough) had anything to do with it he would still be locked in a silent world, probably at a special school, and effectively written off for the first few years of his life (at least).

We were fortunate enough to meet parents who actually live in our road, and whose own autistic son was (and still is) on a behavioural programme called Verbal Behaviour; VB has literally been a miracle for our son. Two and a half years ago William had perhaps 20 words; his speech is now considered to be above average for a child of his age.

This is just the tip of the iceberg, however; William is able to make and maintain perfect eye contact, attend mainstream school (with full-time support), has genuine friendships, for the moment at least - all of which we were told he would probably never achieve. Like you, after burying my head in the sand for a couple of weeks I started to research William's condition on the computer and literally felt it might be better for us all if I doused the house with kerosene and lit a match. Meeting other parents in the same position was, and still is, the only thing that saved my sanity, and I cannot stress enough to anyone who has just been given such a bombshell how important it is to find and meet other like-minded souls.

The joy William has brought to our lives is immeasurable, and we treasure the amazing and brave friends we have made through him, but life for the parents of all children with special needs should not have to be such a struggle.

Good luck, and thank you so much for sharing your experience. Emma Howard

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