{"id":29251,"date":"2023-05-18T09:19:19","date_gmt":"2023-05-18T08:19:19","guid":{"rendered":"https:\/\/www.sense.org.uk\/?p=29251"},"modified":"2026-03-10T17:30:58","modified_gmt":"2026-03-10T17:30:58","slug":"four-things-you-shouldnt-say-to-a-parent-of-a-disabled-child","status":"publish","type":"post","link":"https:\/\/www.sense.org.uk\/blog\/four-things-you-shouldnt-say-to-a-parent-of-a-disabled-child\/","title":{"rendered":"Four things you shouldn’t say to a parent of a disabled child"},"content":{"rendered":"\n

Karla is mum to Alfie, a happy and sociable little boy with complex needs. Alfie is on the pathway to being diagnosed with autism<\/a> and sensory processing disorder. He also has pica, which means he eats non-foods, and uses a walker to get around. He loves attending play sessions at Sense Hub Loughborough<\/a>. <\/p>\n\n\n\n

In this blog, Karla tells us about the judgemental comments that have been difficult for her to hear when she\u2019s taken Alfie to mainstream play settings. <\/p>\n\n\n\n

\"A<\/figure>\n\n\n\n

As a parent of a child with complex needs, it\u2019s so hard to attend groups where you feel judged on your parenting skills. <\/p>\n\n\n\n

These days, I only take Alfie to disability-friendly places like the Sense Hub. They are so supportive, they welcome Alfie for who he is, and they share joy in his achievements.<\/p>\n\n\n\n

But in the past, the comments I\u2019ve received from other parents and professionals have contributed to my mental health suffering. <\/p>\n\n\n\n

People have questioned whether Alfie\u2019s needs are real, and whether I\u2019m doing the right things for him. It\u2019s so hard for me to hear this, because I already find it hard to believe in myself, and to know that I\u2019m doing the best I can for Alfie. <\/p>\n\n\n\n

These are some examples of some things that people have said to me about Alfie, and why you shouldn\u2019t say them to a parent of a child with complex needs. <\/p>\n\n\n\n

\u201cAlfie is just attention-seeking and naughty.\u201d<\/strong><\/h2>\n\n\n\n

I\u2019ve heard this a lot when I\u2019ve tried to take Alfie to mainstream groups, even when I\u2019ve clarified that he\u2019s on the pathway to being diagnosed with autism. <\/p>\n\n\n\n

I\u2019ve been in the supermarket with Alfie when he\u2019s having a sensory overload meltdown, and people have told me that he\u2019s being naughty. <\/p>\n\n\n\n

“These phrases are upsetting, hurtful and also quite damaging to hear as a parent. They make you question your parenting skills and your own knowledge of your child.”<\/p><\/blockquote><\/figure>\n\n\n\n

Even family members have told me to ignore Alfie\u2019s behaviour so that he \u201cgets over it\u201d. <\/p>\n\n\n\n

These phrases are upsetting, hurtful and also quite damaging to hear as a parent. They make you question your parenting skills and your own knowledge of your child. <\/p>\n\n\n\n

\u201cAlfie will walk when he wants to. He doesn\u2019t need a walker.\u201d<\/strong><\/h2>\n\n\n\n

Alfie uses a walking frame when he\u2019s outdoors for support and safety. It was given to him by his physiotherapist. <\/p>\n\n\n\n

At a baby group I attended when Alfie was just learning to find his feet at around 20 months, I was told, \u201cHe could walk if he wanted to, he\u2019s just being lazy. He doesn\u2019t need a walker.\u201d <\/p>\n\n\n\n

This was shattering to hear as a parent: that someone thinks of my child as just being lazy! <\/p>\n\n\n\n

Alfie has hypotonia, which means he has low muscle tone, which makes everyday tasks harder for him. He gets tired easily. Every step takes more energy from him than it does from most other people. <\/p>\n\n\n\n

So no, Alfie isn\u2019t lazy. His motivation and determination has got him walking!<\/p>\n\n\n\n

 \u201cAlfie doesn\u2019t have eating problems, he\u2019s just a fussy eater.\u201d<\/strong><\/h2>\n\n\n\n

Alfie has always had eating issues. He\u2019s been admitted to hospital so that he could be fed through a tube a few times. He also has pica, and some gastrointestinal issues and trouble with chewing and swallowing. <\/p>\n\n\n\n

Even so, I\u2019ve been told lots of times that he\u2019s \u201cjust a fussy eater\u201d. <\/p>\n\n\n\n

“Parents of disabled children have a hard enough time dealing with daily life, without having to deal with comments from people who just don\u2019t understand.” <\/p><\/blockquote><\/figure>\n\n\n\n

Some parents have commented this to me after they saw Alfie munching on cereal during a messy play session. Dry cereal is in fact one of Alfie\u2019s safe foods, so of course he would happily munch on it. <\/p>\n\n\n\n

As his mum, I know that Alfie doesn\u2019t like to put certain textures in his mouth, so I know what he can and can\u2019t eat.<\/p>\n\n\n\n

Comments like these make me totally question myself and my abilities as a parent. It hurts that people think Alfie is choosing to refuse food that he could be enjoying.<\/p>\n\n\n\n

\u201cYou\u2019re being paranoid. There\u2019s nothing wrong with Alfie.\u201d<\/strong><\/h2>\n\n\n\n

Once, I took Alfie to a soft play centre. At the time, he couldn\u2019t sit unaided, and was happily laying on his back watching others. <\/p>\n\n\n\n

A parent came up to chat and asked me, \u201cWhy isn\u2019t he playing like his twin sister?\u201d I explained about Alfie\u2019s hypotonia and global developmental delay.<\/p>\n\n\n\n

Her response was to take Alfie in her arms and try to stand him up, whilst telling me \u201cthere\u2019s nothing wrong with him, don\u2019t be so paranoid. You just need to push him more.\u201d<\/p>\n\n\n\n

I was so shocked I couldn\u2019t even speak. I took Alfie off her and I walked away fighting back tears. <\/p>\n\n\n\n

I questioned myself: was I holding my baby back? Was I actually imagining it all? Could the doctors be wrong? <\/p>\n\n\n\n

But that parent was the one who was wrong. As parents, we know our own children best. I wouldn\u2019t say my child had difficulties if he really didn\u2019t. <\/p>\n\n\n\n

Parents of disabled children have a hard enough time dealing with daily life, without having to deal with comments from people who just don\u2019t understand. <\/p>\n\n\n\n

When people do take their time to listen and understand, the difference it can make is huge. <\/p>\n\n\n\n

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Come and see us in Loughborough<\/h2>\n\n\n\n

We offer support for children and adults with complex needs at our new Sense Hub in Loughborough.<\/p>\n\n<\/div>\n <\/div>\n\n

\n Find out more<\/a>\n <\/div>\n <\/div>\n\n <\/div>\n\n","protected":false},"excerpt":{"rendered":"

Ableist comments from other parents and professionals have really made things hard for me. These are some examples of things that I\u2019ve been told that have made me feel judged.<\/p>\n","protected":false},"author":14,"featured_media":29218,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[7],"tags":[],"display_author":[1192],"class_list":["post-29251","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","display_author-karla"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/29251","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/comments?post=29251"}],"version-history":[{"count":0,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/29251\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media\/29218"}],"wp:attachment":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media?parent=29251"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/categories?post=29251"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/tags?post=29251"},{"taxonomy":"display_author","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/display_author?post=29251"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}