Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
Things I've learnt along the way
We are now 9 years into our special needs journey. The roller-coaster that never stops. One you want to ride and sometimes it's great but most of the time you're so scared but you just got to ride it out.
I have experienced an awful lot of highs and lows and have learnt lots along the way. I thought I would share some of the things I've learnt along the way with you.
Please share with me any other ones you have!
Ignorant people
There will be some people that no matter how much you try to get them to understand your situation, they never will. You will adopt a smile and grit your teeth approach for most of the time and the other small bit of the time you will become an angry bear looking for its next feed!
Car sticker
A sticker on the back of your car saying leave 5m for wheelchair access will become invisible and will make no difference! Also those using a disabled bay without a badge will become part of your daily battle too.
Friendships
Although you will loose a lot of your friends, you will actually make a whole new group of incredible friends. Most of whom you won't actually ever meet you will just talk to them every day on social media.
There really is no support like that of an SEN parent.
Preparation
Being prepared is key. Always be ready for every eventuality. Having emergency bags packed all the time and cupboards stocked and a big diary ready for all the appointments are a must.
Sleep
Sleep becomes a thing of the past. There's being a parent tired, then there's being an SEN parent tired. Believe me they are totally different.
You will pull many an all nighter unfortunately without the blaring music, neon lights and alcohol.
You will be mentally physically and emotionally drained constantly.
Cheerleading and boxing
Two sports that don't go hand in hand normally but in the SEN world do! Boxing gloves and pom poms should be handed out at time of diagnosis!
You will become your child's biggest cheerleader. We all want our child to do well but you will constantly be cheering them through lifes battles and fighting your way through all the tough times and battles with every single health service to get what is right for your child.
Patience
Patience really is a virtue. You will practice the art of deep breathing multiple times of day. In the same breath you will also be muttering words the English language should not hear!
Times will be trying especially on no sleep but you can do this!
Compassion
You will become the most compassionate, passionate and understanding person. Judging gets noone anywhere. Showing those who are going through troubles that everything will be OK becomes the normality.
Tears
You will cry ALOT!! Happy tears, sad tears and tears you've no idea why! I've cried into my cereal before and I've no idea why! You will cry not only for yourself, but your child and also everyone else going through the same things.
Medical jargon
You will become an expert in medical jargon and will understand what they are talking about on Ambulance, 24hrs in a&e and Holby city. Medicals words like SATS, tachiacardic, IV, stable, fluctuating, stoma etc become your everyday language.
Doctor
Youre basically a Dr without the degree. Come to think of it you're also a physiotherapist, occupational therapist, surgeon, manual handling expert, sleep expert, PA.... The list goes on!
Parents know best
You know best about your child. Whether that's what they need, what they are trying to tell you or what treatment they need. You won't be listened to a lot of time but intuition is great thing.
Never ignore what you think is happening. You will never be wrong.
DLA forms
These should be handed out with a stiff drink and a bowl of snacks. You will cry and walk away from those forms more than anything you ever do.
Hours of writing about exactly what you're child can't do and all the bad days is ultra depressing. My one tip would be to photo copy the forms so you can transfer it over onto the next renewal forms.
Bedtime reading
You will no longer read a mushy love story or an exciting thriller book, these will be swapped for medical journals or online documents. Reading countless articles about how different therapies can help your child will become you're everyday reading.
Pricing
Be prepared to have no money.... Ever! Everything costs triple the price when special needs is put in front of it. Therapies, equipment and toys will be so expensive toy will have to sell your soul to fund them.
Celebration
You will celebrate every single milestone as if you've just won the lottery or world Cup - because let's face it, you have!
From putting their finger up their nose or pulling your hair, to throwing the spoon or smiling through physio. Everything will be celebrated because you know how much strength went into doing it.
Pharmacy
The local pharmacist doesn't need to ask your name when you walk in to collect your child's medicines. They will automatically collect the prescription for you as you're in there every week.
They will also recognise your voice on the telephone!
Rants
You will have daily rants about everything. They will become the norm. From rants about sleep to rants about why your child isn't aloud a hood on their specialised wheelchair. You name it you will be able to rant about anything.
Man you will need this to survive!
Food
You will find yourself stockpiling on food your child eats. It doesn't matter if they eat nothing else at least they will be eating something.
Best job in the world
It may be the hardest and toughest job you will ever do, but it is also the most rewarding job you will ever do. Let me tell you that you will always pull through whatever this journey throws at you.
You are strong and amazing and never forget that. You are not alone on this journey no matter how lonely the days feel.
