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#SETD5Syndrome

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Becky Whinnerah<p>Progress. A only woke once last night at 2 ish. She was hard to settle but after I winged my way through telling a story (just off the top of my head - couldn&#39;t risk putting the light on) she drifted off. Phew. Unfortunately I was pretty awake but I think I grabbed an hour in the end.</p><p>Morning<br /><a href="https://mstdn.social/tags/LearningDisability" class="mention hashtag" rel="tag">#<span>LearningDisability</span></a> <a href="https://mstdn.social/tags/RettSyndrome" class="mention hashtag" rel="tag">#<span>RettSyndrome</span></a> <a href="https://mstdn.social/tags/SETD5Syndrome" class="mention hashtag" rel="tag">#<span>SETD5Syndrome</span></a> <a href="https://mstdn.social/tags/SleepDisorders" class="mention hashtag" rel="tag">#<span>SleepDisorders</span></a></p>
Becky Whinnerah<p>A bit niche, but I&#39;m looking for people in the <a href="https://mstdn.social/tags/RettSyndrome" class="mention hashtag" rel="tag">#<span>RettSyndrome</span></a> <a href="https://mstdn.social/tags/SETD5Syndrome" class="mention hashtag" rel="tag">#<span>SETD5Syndrome</span></a> <a href="https://mstdn.social/tags/Autism" class="mention hashtag" rel="tag">#<span>Autism</span></a> <a href="https://mstdn.social/tags/LearningDisability" class="mention hashtag" rel="tag">#<span>LearningDisability</span></a> <a href="https://mstdn.social/tags/Epilepsy" class="mention hashtag" rel="tag">#<span>Epilepsy</span></a> community. Our daughter has all of the above. Would love to meet fellow <a href="https://mstdn.social/tags/ParentCarer" class="mention hashtag" rel="tag">#<span>ParentCarer</span></a> <a href="https://mstdn.social/tags/UnpaidCarer" class="mention hashtag" rel="tag">#<span>UnpaidCarer</span></a> folks</p>
Becky Whinnerah<p>School just phoned. A slept nearly all afternoon, then woke just in for the Wellbeing lady to give her a little aromatherapy massage before hometime. If only all schools were this flexible <a href="https://mstdn.social/tags/RettSyndrome" class="mention hashtag" rel="tag">#<span>RettSyndrome</span></a> <a href="https://mstdn.social/tags/SETD5Syndrome" class="mention hashtag" rel="tag">#<span>SETD5Syndrome</span></a> <a href="https://mstdn.social/tags/Disability" class="mention hashtag" rel="tag">#<span>Disability</span></a> <a href="https://mstdn.social/tags/LearningDifficulties" class="mention hashtag" rel="tag">#<span>LearningDifficulties</span></a> <a href="https://mstdn.social/tags/epilepsy" class="mention hashtag" rel="tag">#<span>epilepsy</span></a></p>
Becky Whinnerah<p>Our daughter A, who has 2 rare syndromes and complex needs, has been living her best life out with her wonderful PA this evening <a href="https://mstdn.social/tags/RettSyndrome" class="mention hashtag" rel="tag">#<span>RettSyndrome</span></a> <a href="https://mstdn.social/tags/SETD5Syndrome" class="mention hashtag" rel="tag">#<span>SETD5Syndrome</span></a> <a href="https://mstdn.social/tags/DisabilityMstdn" class="mention hashtag" rel="tag">#<span>DisabilityMstdn</span></a> <a href="https://mstdn.social/tags/LearningDisability" class="mention hashtag" rel="tag">#<span>LearningDisability</span></a> <a href="https://mstdn.social/tags/Autism" class="mention hashtag" rel="tag">#<span>Autism</span></a></p>