Top 5 things to prioritise as a SEND parent

Where do we start, and actually is there a starting point as things come at you so fast sometimes the question is what do I touch first?

This can happen to me at times, the list looks endless and I need a moment (when that exists) to just reset and prioritise. That being said I have been asked what would I prioritise as a new or existing SEND parent that needed some guidance. In no particular order here are 5 things that are right up there with many others.

SEND parent list

1. Patience

2. Correct diagnosis

3. Valuable connections

4. Understanding you are not alone

5. Fight for your child's entitlements

Patience

Regardless of the list and the order you decide to put it, this one for me needs to be high up there. If like many people you do not have much of it, you will need to find some from somewhere because it will certainly come in handy. The variety of things of you have to

get used to from your child's habits and behaviours, to getting what should be simple things sorted can really seem to test you at times.

I was certainly not someone with much patience myself until Luis came along. Kristina always says she admires my patience when dealing with Luis but honestly I have no idea where it came from. There are many times you may wish to question your sanity and the things you have to contend with.

Your child may be prone to doing things that only they understand and eventually over time you may too especially if they are affected by an intellectually disability. Simple things like getting them dressed can seem to take a lifetime especially if you are in a hurry. A parent not too long ago mentioned to me his daughter hates having clothes on and this can present a challenge for him when they are outside or travelling in the car as she tries to take them off all the time.

Another area that requires you to just breathe and take it all in is dealing with a non-verbal child. If you are fortunate enough to be able to use some form of sign language or pecs cards to remove that barrier, it can go a long way in helping understand your child's needs. However if like myself your child is not able to use those forms of communication then many times it can feel like a process of elimination.

That is not to say that some reoccurring things are not easy to pick up over time, you understand for example if they want the tablet and bring it to you. It is about the moments when they get frustrated and upset because they need something and you just do not quite understand what, or they are up in the middle of the night 3,4,5 times or just totally up and all you want to do is sleep.

On a totally different note but in the same context of having patience, I will get to fighting for your child's entitlements later but this can be a draining and an exhausting experience in many ways. It is a necessary step that needs to be taken however, requiring more patience than usual.

Correct diagnosis

As obvious as this sounds, having a correct diagnosis is necessary to understand how best to help your child. At first a professional who has not encountered your child's specific illness may try to gauge what they think it may be, based on past experience and by any behaviours or features that exist. This does not mean that they will not try to find out the correct diagnosis, I will give you an example.

When Luis started having his seizures and missing milestones, we were in the process of seeing a genetic doctor. She was great to deal with really took her time with him and us to explain things and trying to be supportive. Using her past experience she assessed Luis' features and behaviours to be Dravet syndrome. Although it was explained to us that this could of course change once we get the results back, it meant that we were initially left researching and finding out everything we could about Dravet syndrome.

Once the results came back Luis was diagnosed with Nascimento X-linked intellectual disability, which was of course another illnesses and then a different set of research started for us. We were lucky that we had the diagnosis quite early on so we did not have to wait too long, as many can wait for years to have a diagnosis in place.

This can help with so many things from planning and applying for schooling, especially if you need to get a special education plan in place. You can set future expectations with things like the type of vehicle needed, housing needs and hospitals, especially if you have more than one child the location will be important. Something that may need to be considered as terrible as it sounds and it is to write, if the illnesses is terminal can certainly add many other dimensions to any future planning, therefore having that correct diagnosis in place is vital.

Valuable connections

Connecting with the right people can save you so much time. I have found that there is normally someone amongst a group of SEND parents that is very knowledgeable, and has answers and knows exactly where to look. Whether you have an upcoming disability living allowance renewal on the horizon and need help with the forms, you need living aids and are not sure if you need to go it alone financially or if there are organisations who may support with this, or even some respite hours, somehow they know where to point you.

Of course most things are on the internet now, but it isn't quite the same as having someone in front of you helping you past some of the pitfalls.

That being said if you are not someone who is outgoing and like to meet new people then you can and look into organisations who support with disabilities. They are generally open to chat via email or the phone. Either route you decide on one may just have the answer to that burning question you have had for some time.

Connections are also a great way to help with next topic on my list, getting off the lonely spot.

Understanding you are not alone

You may feel that this sounds similar to the above but it deserves it's own mention. From the moment you learn about your child's additional needs anxiety and a feeling of being overwhelmed can kick in. If your friends and family are not in a similar circumstance then discussing the subject can be difficult, both from an acceptance point and having the kind of communication that could be supportive. Of course this does not apply to everyone.

However if you find yourself in the above then it is very easy to think I am alone or my partner and I are alone in this. That loneliness can make you wonder are we the only ones going through this, even though you know it is not entirely true.

Reading about the illnesses is just the start in removing yourself from an island, you can see other experiences, though depending on how rare the illness is, the stories shared may be limited. However getting in touch with others whether through an organisation or through the schools as stated above, you will slowly piece together regardless of the diagnosis we are in one way or another experiencing very similar things.

Fight for your child's entitlements

Each country has it's own set up in regards to how it supports those with additional needs. One thing is certain none of them are straight forward and the paperwork alone can seem daunting. There are of course different provisions depending on the countries and how far along they are in their journey of being inclusive. In some instances they offer a monthly payment to support an individual, SEND schooling, occupational therapy, community support, speech and language help, and some places also include other daily living aids.

Though these things exist, it somehow feels like you need to keep jumping through hoops to get them in place especially if the activities are state funded. To an extent you understand that perhaps some have abused the system there to help those genuinely in need and this has led to more strict or robust measures being in place, making it difficult for those of us who have a genuine need.

As strange as it may sound some parents have not even begun the journey yet in order to get their child's entitlements, whether that is because they do not know they can, how to, or they fear the effort. Regardless of what others decide to do, I think that you ought to consider doing it yourself.

Conclusion

There is no right or wrong, just a matter of prioritising things in your life the way you see it and most importantly according to your circumstances. So now that I shared with you my top 5 list for SEND parents, what do you think, do you agree? Or do have a top 5 you prefer let me know in the comments below.