Ten tips when your child is newly diagnosed with a special need or disability

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He's not a condition, he's my boy

You may have suspected, even all but known, but the moment when you finally get a confirmed diagnosis for your child is a watershed.

You may feel numb, distraught, helpless. If you had dreams or expectations for your child's future, they're now in tatters. It's time to start again with a fresh set of hopes.

When your child receives a diagnosis of any special need or condition, it is a very distressing experience that can also feel very isolating, especially if you do not know any other parents in your position. It can also, at the same time, be a relief that you were not imagining these symptoms and that you now have a name for the problem. This is particularly true when the child has a hidden disability such as Asperger Syndrome or ADHD.

But what practical steps do you need to take? Here are ten tips below, please add your own in the comments.

  1. Let your child's school know. It is a good idea to note this in writing and even give them a copy of your child's letter of diagnosis. Ask for a meeting with the SENCo to discuss the way forward.
  2. Let your family know - you will need support. There are lots of books that help explain in simple terms, conditions such as Asperger's. In my own family, I had lots of comments such as "Well lots of children do that, you can't blame that on Asperger's" or "Maybe you should just be a bit stricter with him," and even, "Well he doesn't seem that different to me." And when they say, "So what does he do that's so different?" you can be sure you will be lost for words. I particularly like the book Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family. Bite your lip and hand them this. There are many similar books.
  3. If you haven't already, make a file of all your child's information. This includes school reports, IEPs, letters from medical practitioners, Educational Psychologists and anyone else they have been assessed by. Make copies and keep the originals in a safe place. Perhaps even scan the originals so you can print out a copy whenever you need one. Make the scans into PDFs and keep them in a single documents folder. Make sure your paper documents are all in chronological order. Organisation is crucial as you will end up with a LOT of letters and reports.
  4. Don't think for a moment that you are going to remember every important moment of your child's journey in your head. If you are going to apply for a statement, Disability Living Allowance or anything else, don't rely on your memory. Make notes of when you noticed certain issues in your child. Write down any particular behaviours or problems they may have. Apart from anything else, you will be able to track their progress. I thought I'd be able to remember everything that happened - but now, it's only the major things that stick out. The smaller, but often just as important events or incidents may fade into the background if you don't write them down.
  5. Make a note as well of everything positive you can think of about your child. Sure, they have problems, but you still love them. Write down the things about them that make you smile, or that they're really good at. You may need to remind yourself of these in any dark moments.
  6. When you go for a meeting with a SENCo, Ed Psych or Doctor, write down every point you want to make before you go. Minds go blank in moments of stress. Also, if you are concerned that you won't remember what happens in the meeting, take a trusted friend, supporter, or family member if you can't take your partner, or if you are a single parent. Ask them to take full notes of the meeting or consultation. In the past, I have received notes of consultations from a medical practitioner that have got my child's name wrong as well as numerous details of the appointment. This happens because the consultant dictates their notes and they have been incorrectly transcribed. Ask for a correction if important details are wrong. This is a record of your child's health and education issues and it needs to be right.
  7. If you are planning to apply for a statement, think at the outset what the most appropriate educational setting might be for your child. Have a frank and honest discussion with the school SENCo about how the school can support your son or daughter. If you doubt a mainstream setting can provide sufficient help, start doing your research. Don't wait until you get a statement before you think about this. You need to know the provision that is available in your area, or if there is nothing suitable, where you might find it.
  8. Never be afraid to ask for help for yourself. A GP can help if you are under stress or a special needs parent group can be a great way to share experiences and find advice. Try your local sure start centre for resources or your local parent-carer forum's website. Find Facebook groups you can join in with or visit the Contact A Family website for information. I have a public list you can follow on Facebook of Special Needs and Disability Facebook pages, to which I am always adding.
  9. If you have a partner, make sure your approach is consistent and that you do not contradict or blame each other. Having a child with a disability or special need isn't anyone's fault, least of all theirs. They need you to be united and supportive. If you need it, seek counselling together or family therapy. Don't suffer in silence or fight until your marriage disintegrates before you seek support.
  10. The internet is your friend. Research resources, support groups, charities that can help provide respite or play opportunities. Knowledge is power. You are your child's best advocate, so find out as much as you can online or visit your local library to use their computers and check out their notice boards. If you find this kind of research impossibly difficult, find a friend to help or you can always contact me to help find a resource for you.

Those are my top tips. Do you have one? Let's hear it!

Tania Tirraoro
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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two sons with Asperger Syndrome.
Journalist & author of two novels and a guide to SEN statementing. PR & social media expert. Rare Disease & chronic pain patient advocate.
Tania Tirraoro
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10 Comments

  1. StephsTwoGirls

    My top tip would be to take a deep breath and try not to panic. Also don’t try to ‘fix’ everything at once. Appreciate that finding the right answers will take some time, and there will be a lot of ups and downs on the way – a roller coaster ride indeed x

  2. I always remind the folks at school, no matter what the meeting is about, that this is about my daughter, not them, not what is best for them, the school, the district. I ask questions like crazy and if something doesn’t sound right, I exercise my right to table the meeting until I can research and get the fact that I need to make a sound decision for my daughter. Parents need to know they have that power and that at CSE/IEP meetings they have the right to be heard and if they don’t agree with the direction the school wants to take, they can refuse to sign papers and table that meeting!

  3. Another “mind changer” is realising that, unlike with a broken leg or dementia, they have always had autism!! My son was diagnosed at 9 years old but he’d always had the condition it’s just that WE didn’t realise!!

    Diagnosis is for us to realise, nothing’s changed in their condition!! So count it as a blessing that you have caught up with your son/daughter and can start to understand them better.

  4. Your memory of being told to just be a bit stricter with your child really hits home. I have had many parents say they received this advice, and at one school I even had to fight against a member of staff that felt if I just told the children off more they would “be normal.” Knowledge is power, being informed about your child’s condition, and then simply presenting that information calmly to people can make the road smoother. But also, don’t pressure yourself, you don’t suddenly have to get a phd simply because your child has a diagnosis, at the end of the day Love is the most important thing. Take time to do that and the rest will pan out.

  5. We did it

    You mention about keeping notes but consider keeping a diary of behaviours, problems, comments etc. My son’s (HF Autism) behaviour can be very different at home to school so we were unable to get him extra support at school. We were able to show that his behaviour was like that because of problems/difficulties at school that he was bottling up until he came home where he felt safe to release his anger/frustration. Our diary helped us win our tribunal and he now has a statement 🙂

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