‘If you don’t make things happen, then things happen to you’, so the saying goes. This is especially true for the things I am about to talk in this short article. ‘What next?‘ It is natural for one to worry about how to proceed after receiving a neurodevelopmental diagnosis for your child. The following ten things revealed below will be the best antidote to your worry.
I have covered ‘How to prepare for a neurodevelopmental assessment‘ and ‘The ten aspects of a neurodevelopmental assessment‘ in my previous articles. In this article, I have broken down the bewildering subject of ‘what to do after the neurodevelopment assessment‘ into ten straightforward and easy to implement parts.
Remember. Every child is unique. Hence, this list is neither a sequence, nor is it identical for everyone. Nevertheless, by considering all these aspects, you will be able to make the best of your child’s potential.
#1. Get Organised
Information is power. So, the first thing I would suggest doing is to buy a lever-arch file along with a set of file dividers. I would then urge you to file my clinic letter in one section with individual sections for therapy reports, school reports, test results, and so on. By doing so, you will have all the reports and results for your child in a single place. I would encourage you to take this folder with you to all appointments with medical, educational or therapy professionals. This comprehensive source of information, all compiled into a single folder, enables professionals to help you better. You should also consider keeping a diary or a visual calendar. You should write the names and contact details for all the professionals involved in your child’s care on a single sheet and place this at the front of the folder, for ready reference.
#2. Share my report
I would then recommend you share a copy of my clinic report with all your child’s teachers and or therapists. Doing so will have many advantages. First, the professionals will quickly get an understanding of your child’s diagnosis and details without you having to explain. Second, this will prevent needless duplication of further history taking, form filling or some more assessments, thus saving time, hassle, and resources for all parties. Moreover, this will prevent duplications or gaps appearing in your child’s care programme. Consequently, like an orchestra, all the professionals can perform their roles in synchrony, resulting in your child benefitting massively from this coherence and coordination.
#3. Reach out
Having done the above, I would advise you to join local and national specific self-help support groups that I have recommended to you in my clinic letter. You will derive a lot of information and support from these groups. The camaraderie and wisdom you get from these self-help groups can be very comforting and morale-boosting.
#4. Become an expert!
I would urge you to visit the specific websites recommended to you in my clinic letter and read the information contained in them. I would suggest refraining from general Google searches at this stage. Next, I suggest reading the specific books I have mentioned in my clinic letter, relating to your child’s diagnosis. The books I recommend are the ones I have perused and have found them to be helpful. Nonetheless, I very well know that they are likely to be other equally good books on the subject. Therefore, feel free to read the book samples on Amazon and buy the ones you like.
The aim of this exercise is for you to become knowledgeable about your child’s condition and know the many ways in which you can support them.
Based on your child’s needs and diagnosis, I would have recommended you seek the input of one or more therapists such as a Speech and Language Therapist, an Occupational Therapist, Physiotherapist, or a Psychologist. Please liaise with your insurer/local health provider, to help your child gain access to the required therapy. The principle of ‘use it or lose it’ is very much true when it comes to your child’s enablement. This is because the neural networks that are not actively and explicitly engaged can degrade over time. Also, the timing, the intensity, the specificity, the repetition, and the incentives following therapy sessions, are especially important to maximise your child’s progress and development. I shall cover this topic in detail in another article.
What is also crucial is for you to act as your child’s therapist! By this, I mean you need to observe and learn the exercises and strategies given to you by your child’s therapist and integrate them into your child’s daily routine. You should offer these exercises to your child in a way that is fun and engaging.
Whether your child is in a nursery, pre-school, or school and whether this education provider is in the private or public sector, you must engage with your class teacher, key worker and the SENCO (Special Educational Needs Coordinator). Please share my clinic letter with them. And share all the information you have on your child. Let your therapist show your child’s key worker/teaching assistant, the exercises and strategies they can practice to support your child.
Listen to the concerns and feedback from your child’s teacher. Consider maintaining a home-school diary. Educational professionals are trying to do their best within the time and resources they have. Therefore, always handle the discussions with tact and respect. Become a ‘pleasantly persistent parent’ (PPP). Become an advocate for your child.
#7. Seek support
Raising a child with special needs can be financially and emotionally exhausting. Therefore, think through all the sources of help you can tap into. Use my clinic letter to apply to claim benefits and allowances, such as the Disability Living Allowance and Carer’s Allowance, that you may be eligible for. Consider visiting your local Citizen’s Advice Bureau or your local council to find out about information about all the support that is available locally. You may be eligible for concessions on council tax, energy bills, mobility, and access arrangements.
I would also recommend you share your fears and feelings with your close family and friends. They may be willing to offer you respite and other practical help and support. A problem shared is a problem halved.
Depending on my assessment findings, I may have recommended obtaining tests for hearing, vision, or dental check-up for your child. In some cases, I would have recommended undertaking blood tests to rule out specific genetic or metabolic conditions. If so, please consult your General Practitioner for a referral to appropriate services to help you get these tests undertaken.
Each child is unique, and so is their management plan. If I have recommended medications to tackle certain neurodevelopmental conditions such as ADHD or sleeping difficulty, then please administer medicines to your child as per the advice contained in my clinic letter. Your General Practitioner will be able to give you repeat prescriptions where and when required.
If you have not been advised any medical measures, it is still essential to put in place the behavioural, environmental, and educational measures that have been discussed with you.
Finally, it is essential to periodically review all the above aspects of your child’s management plan. A review is crucial for evaluation which in turn is vital for progress. Dependent on your child’s diagnosis and condition, he or she will benefit from a review or follow up either in NHS or privately. Such an appointment will help take stock of your child’s situation at that point and formulate further steps. Having a folder, as discussed above, will help you to plan and schedule follow up appointments when and where required.
‘Our grand business is not to see what lies dimly at a distance, but to do what lies clearly at hand’, said Thomas Carlyle. So, by applying the above measures as contained in your child’s clinic letter, you will be boosting your child’s chances for progress and development. Just like how a river cuts through even the mightiest rock, you too can carve your child’s future through patience and perseverance.
- Gada S. Community Paediatrics. Oxford Specialist Handbook in Paediatrics. Oxford University Press. ISBN 978 0 19 969695 6. Published Sept 2012.
- For families with disabled children. https://contact.org.uk/