PDA

Join the Conversation on
PDA
60 people
0 stories
4 posts
Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in PDA
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Community Voices

    My Daughter

    #Autism #ADD #PDA #HEDS #Anxiety #Skin Picking disorder #Isolation #parental shame
    #chronic Illness

    I am so worried about my 5 year old daughter. She will be 6 in November, and is on the autism pathway waiting for assessment. Potentially she has PDA, ADD and a genetic disorder I have called hEDS. She has only recently gone full time at school but they still won’t let her finish at the same time as her peers and I have to pick her up early from the office. Her school friends often overtake her home though, as she walks slow. Often her friends go to the park together or have arranged play dates. They are almost always in pairs. Other parents barely talk to me, let alone arrange play dates. I know my daughter has been feeling increasingly isolated.
    Yesterday I picked up my daughter from school and she was already feeling very sensitive, she was crying and fed up. She was passed by several friends talking about their play dates they had arranged. She wanted to go to the park, I also had my 3.5 year old son in a pushchair (he potentially has ADHD and also wanted to go to the park) but it was 30 degrees and I worried it was too hot, and she had already started crying and getting upset. (Of course other parents didn’t care about this). All of this resulted in a full on breakdown of epic proportions. She was so upset and so overwhelmed she struggled with her breath, she couldn’t stop panic crying. Other parents overtook us on the way home and said nothing, didn’t ask if she was ok. My daughter is well-loved at school even though she is very quirky and I find this behaviour from other parents so isolating. I honestly feel so alone sometimes.

    We got home and the continuous crying continued for about an hour. She wouldn’t let me touch her. She then proceeded to bite her fingers until they bled. She has been biting her fingers for about 10 months now, since she started reception year. She now has lumps on her fingers caused by scar tissue and infections. I am taking her to the nurse today, thinking she will get diagnosed with skin picking disorder (we are UK). Not sure how much they will do to help her as they continue trying to blame my parenting. I have done 6 parenting courses. Parenting SEND children is honestly so difficult, so thankless and no one helps you.

    I am wondering what is going on at school and why she leaves so sensitive. I wonder if it is a build up of trying to fit in over the day and masking. I worry she is being bullied by a couple of kids also (she tells me she was pushed at one point and called a baby by one boy). Also I think the isolation she feels from leaving at different times and being unable to make those connections is finally getting to her. It upsets me so much to see her like this. I have chronic illness (hEDS, fibromyalgia and a blood clotting disorder). Last week I was in hospital with a ruptured ovarian cyst, today I have the migraine from hell (I get bad pain, nausea, aura, blurred vision and unusual smells) and I feel like I can barely walk. Hubby is at work, I have no family near to help. I have to get my daughter into school with my 3 year old in tow. She doesn’t really want to go. Her attendance is already very poor (less than 60%). We are awaiting an EHCP assessment.

    I just feel so alone with it all. I am struggling with my own health, my children’s extra needs. How do I calm my daughter’s anxiety? How do I make my GP give us extra help? I have considered taking her out of school and homeschooling her but I feel I am not well enough or capable of that. I am worried about her biting her fingers and causing herself serious infection as her fingers look so scarred and awful and her hygiene is not good (she impulsively touches herself down below and always plays in dirt) and I am forever trying to get her to wash her hands and nails.
    My anxiety is through the roof. Just looking for support really also as in very short supply from other parent/carers from her school.

    10 people are talking about this
    Community Voices

    Have a child with pathological demand avoidance? #Autism

    If #PDA is negatively impacting your child's education, consider switching to computer-based learning. For my child, removing the human teacher from the equation completely circumvented his demand avoidance. And there's never been a better time to try it. You can read more about our experience in my article on Medium: medium.com/@PodnarWriting/why-computer-based-learning-could-... #Autism #PathologicalDemandAvoidanceSyndrome

    1 person is talking about this
    Community Voices
    Carole Moss

    Advice for Parents of Children With Rare Diseases

    The single most important piece of advice I want to share with all new parents managing their child’s rare disease is this: never stop looking for answers. Instinct is terrestrial and we often overlook its eerie silhouette in favor of a safer figure. We are taught early on to forfeit our sixth sense for the logic of experts. Don’t do it. Do not default, surrender or play down what hundreds of years of survival have bred into your DNA. Instead, fight for your child’s full diagnosis. As rare parents, we understand the personality of our child’s etiology. We see the evolution, wrongness and the sadism that coincides with creatures like organ failure, cancer and progressive conditions. It is our perspective that must be researched, understood and called upon as complimentary to traditional medicine. Shutting out this unique knowledge source is a mistake that can costs lives. The lesson is simple: never dismiss the sophisticated understanding of your child’s medical complexity. Keep pushing doctors. Keep advocating for that test, that procedure, that referral. Keep looking for answers to the undiagnosed. Keep asking questions. Keep reading. Keep correcting specialists. Keep watching your child. Keep listening to your gut instinct until you have the answers. We recently got more answers, not because they were discovered, but because they were carved out, over time, by a tired parent. Red’s medical constellation has grown: branchio oto renal syndrome (BOR), chronic kidney disease (CKD), gastroesophageal reflux disease (GERD), patient  ductus arteriosus (PDA), and now avascular necrosis (AVN). Her organs and bones are dying. We feel that the weight of our findings have been far less crushing than being orphaned by the undiagnosed, misdiagnosed or under-diagnosed. Keep looking. Keep going. Keep hoping. Follow this journey on My Rare Child We want to hear your story. Become a Mighty contributor here .