Many individuals with PDA appear to go into complete free-fall during a certain stage of development. The time that this period of free-fall ensues can vary from individual to individual. Mollie’s period of free-fall was between the ages of about 6-10 years old. Now don’t get me wrong, prior to free-fall she was extremely challenging, difficult to handle, avoidant of many demands, required constant attention, had numerous meltdowns both at home and at school and had boundless energy. However from the age of about six years old everything dramatically nosedived. I put this down to a combination of the increasing demands of society for age appropriate behaviour exceeding her ability to cope combined with an increasing awareness of her difficulties and how others viewed her.
The signs of free fall from my experiences of PDA were as follows
- An increasing need for full control at all times over her own environment and the people in it
- Avoiding demands increased and escalated to anything and everything
- She almost appeared to regress before my eyes. What she could achieve at five years of age she was unable to achieve at 7 years of age
- Really inappropriate behaviour began to escalate E.G. urinating in inappropriate places.
- School refusal began at age six and continued
- Huge issues surrounding sleep began at age six
- Refusal to leave the home full stop began at about age seven
- Meltdowns escalated to multiple times a day last for an hour or more over the tiniest of issues
- Her need to cut me off from other people intensified to a suffocating level
At this stage, and it may happen at various ages depending on the individual, it is important to stand back and to take stock of the situation rather than to try to change the behaviour or to let things develop into a battle of wills. These are the warning signs that a complete crash maybe imminent. How you proceed now could alter the path for the future of the child. During this time much damage can be done by proceeding in the wrong direction and this can take years to undo. Alternatively proceeding down the correct path could significantly reduce the damage and make the road to recovery shorter and less bumpy.
What you can do at home
- Reduce demands to a level that are tolerable for the child. For some children minor adjustments may need to be made but for others a drastic reduction of demands may be the only option.
- Really try to focus on what things are really important and what things can be relaxed on, negotiated or when full control may need to be given to the child. This list will vary depending on age, personal circumstances and the severity of PDA exhibited by the child.
- Try to make home as PDA friendly as possible, therefore creating a calm environment for the child. This may mean completely adapting your way of living and what you consider to be the norm in order to fit in with the child with PDA rather than expecting or hoping that the child with PDA will adapt to your normal living environment.
- The needs of adults may need to take a back seat in the short term but the needs of siblings may still need factoring into the equation. The needs of siblings may become a non negotiable boundary.
What you can do about school
- If your child has become school phobic and is increasingly distressed about attending school then continuing to try to get them into school may cause more harm than good.
- The school may need to change their approach to the child and put the appropriate measures in place. School refusal due to school phobia is classed as a health issue and needs addressing by the school in the form of them adjusting the environment for the child in school and making reasonable adjustments.
- If the school are unable to adapt or to put the appropriate support into place then if it is possible remove your child from school until a full understanding of your child’s difficulties and the appropriate measures that need to be put into place have been established.
- Don’t let local authorities, schools or welfare officers bully you with the threat of fines and prosecution. Your child is not in school for a valid reason and this is different to truancy. The local authority has a duty to provide your child with an education, possibly at home, in the interim. This may not need to be a formal education but could be one that simply aims to re build and re establish trust and relationships. This previous post of mine may help re this situation http://understandingpda.com/2015/03/25/school-refusal-knowledge-is-power/
- If your child is not already on the SEN register request that he or she is placed on it and that an Individual Education Plan (IEP) is put into place.
- If your child is already on the SEN register then he or she should be able to access an additional £6,000.00 worth of funding per annum. If this funding is not being allocated to your child respectfully request that it is. If the school say that they don’t have the funds suggest that the school apply to the LA in order to have a top up on their SEN funding. This document goes into more detail re SEN funding and was kindly shared with me by another parent http://www.councilfordisabledchildren.org.uk/media/409191/cdc_funding_briefing_for_parents_-_final.pdf
- If you feel that what the school can offer your child from their SEN funding falls short of the mark then apply for an Education Health and Care Plan (EHCP) in order to secure further funding to support your child. If your child is achieving academically then focus on the fact that their emotional needs and well being are not currently being met as stipulated in the SEN guidelines.Paras 6.28 to 6.35 describe the four broad areas of need that should be considered: – Communication and Interaction – Cognition and learning – social, emotional and health difficulties – sensory and/or physical needs 6.45 – (talking about the school’s assessment) It should also draw on … the views and experience of parents, the pupils own views and, if relevant, advice from external support services. Schools should take seriously any concerns raised by a parent.6.17 – Class and subject teachers, supported by their senior leadership team, should make regular assessments of progress for all pupils … 6.18 – It can include progress in areas other than attainment – for instance where a pupil needs to make additional progress with wider development or social needs in order to make a successful transition to adult life.
Most EHCP’s are refused first time around but you can then go to mediation or appeal the decision. Don’t give up and follow each and every process through to the bitter end.
Securing the correct support for your child can be a long and tedious process but it can be achieved with persistence and tenacity. If you look at the process like a ladder then this can help, you can’t miss a rung out in your journey to the top but instead you may have to step on each and every rung during your climb in order to correctly fulfill the pathway to support.
Even with all of the above in place it can take years before tangible differences can be seen so please don’t expect quick results. Sometimes, regardless of the strategies and environment put in place for the child, it can be a case of waiting for the maturing years of the child to catch up.
Good luck in your journey and remember, never give up!