The Blog

Are You Boarding the Special Needs Parent Train? Here, I've Kept You a Seat

Allow yourself time to grieve. Some people say that they feel like they've lost their child, that they have to get to know this other child who lives with them, and the changes that will occur in their lives.

I tend to think of the special needs journey a bit like a long train journey. It's busy; full of people, and incredibly fast paced! Often very confusing and daunting, frequently spending time with people on the same journey as yourself for long periods of time. You get to know their lifestyle, their children and they can often become good friends.

Staying with the train analogy, you'll find that as soon as you step foot on that train, it pulls away at great speed. The conductor (consultant) speaking the details of the journey at great length and at a very fast pace. You'll often hear the names of specialists and support workers muttered by various different professionals, and also names of very complicated and terror inflicting conditions.

My advice to you is initially, let them talk. Allow whatever does sink in to sink in. Take your time. Every appointment will be followed up by a report, so you'll have it in black and white to consult as much as you so desire.

There will be reports... in abundance!

They will become your 'personal assistant'. Reports hold names, contact numbers, addresses and dates of your discussion. It also documents your concerns and everything else which was discussed, so don't worry about cramming every detail of every discussion into your already muddled, confused and numb mind.

A good piece of advice that I can offer to you is to keep your reports organised, because believe me, you will need them, and it's much easier to have them at hand rather than stressing and frantically flicking through piles and piles of paperwork. Also, to keep the reports handy is very useful for dates when filling out forms or giving information in meetings. Not only does this make you look incredibly switched on, but it makes you feel good that you are on the ball!

Often you may come away from appointments feeling as though you are no further forward, however, everything you say is duly noted and if required, actioned. You will notice this when the report comes through. Often, the report seems much more in depth that the appointment itself!

When attending consultant appointments, you will feel a mixture of emotions. One being the sorrow of actually having to attend in the first place, another: nerves, harbouring the concern that you will be told something that you dread to hear, and another: determination that this is the day that you will get the diagnosis you've been waiting for.

Frequently, emotion two and three don't occur very quickly.

Diagnosis generally will be made when the consultant and other specialists consider it a definite. It can take years to receive a correct diagnosis, and through experience, it is well worth the wait. Don't become impatient, the last thing you want is to have your child diagnosed incorrectly. This can lead to the incorrect support and treatment. It is a struggle and can be very frustrating at times, but stick with it.

Listen to specialists and learn to understand what they are talking about.

My children see a geneticist and I have grown to understand their terminology and what it relates to. I have an overwhelming interest in genetics and it has grown from the initial appointment.

Don't live on the internet. I have also made that mistake. It's truly awful. You are going to research the conditions that have been uttered by professionals, and you are going to type those long medical terms into the internet to see what they mean, and what the outcome can be, but believe me, there is very little joy comes from too much research. Go ahead and stem your curiosity, and once you've done it, and terrified yourself witless, let me tell you now: the internet usually holds the most severe cases and will report on those cases, so, please don't feel that all is lost. If you are going to do that, try to do your research when you have a consultant appointment coming soon. Then you won't have to dwell on your worries too long! If you have any questions on what you have seen, or read which concerns you to breaking point, contact your consultant, who will endeavour to translate the information into something more suitable to your case.

Allow yourself time to grieve. Some people say that they feel like they've lost their child, that they have to get to know this other child who lives with them, and the changes that will occur in their lives. That's fine, it's your body's way of handling the shock that you've received. If you feel that your emotions are getting a little out of hand, do speak to your healthcare provider to check that things are not falling out of control for you.