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Special Educational Needs and Disabilities (SEND).
Throughout my career working with families, I have always held a passion for supporting and advocating for child with Special Educational Needs and Disabilities (SEND). My very first job, was working as a Teaching Assistant in a school SEND base. Furthermore, I have grown up in a home with a family member who has a Special Educational Need. Most of all, I have witnessed first-hand the challenges parents face, when it comes to getting the help and support they need for their child.
Therefore, this is an appreciation post to all those parents out there who have a child with SEND needs. In my experience, these parents have been the most knowledgeable and committed I have worked with, in what can be extremely challenging situations. In this post I will discuss 5 reasons why I feel these parents deserve so much praise, based on my experiences and my observations.
1. The variety of challenges parents face.
In recent years, there has been a noticeable trend in the reasons why I am asked to support families. This trend was to support families of children with SEND. Usually, I would work with up 15/16 families at one time. On average, I would say at least 9/10 of those would involve a child with SEND. As a result, I have seen first-hand the variety of needs children with SEND have. There are far too many specific needs to go through them all. However, I will touch on some of the more common challenges I have seen parents face.
ADHD.
ADHD (Attention Deficit Hyperactivity Disorder) and ASD (Autism Spectrum Disorder), were two of the more common diagnoses that I would come across. Each presenting unique challenges to the parent.
ADHD as the name suggests, usually involves a high degree of hyperactivity and impulsiveness. This could lead to a child being unable to concentrate on instructions or tasks, difficulty sleeping or acting without thinking. Whilst these are only a few examples of symptoms a child with ADHD may display, for the parent, they present a lot of challenges.
For example, a child having difficulty sleeping, usually would lead to the parent not sleeping. If this is the case day after day, it becomes extremely tough to function with a lack of sleep. Furthermore, a child with ADHD may have little sense of danger or keeping themselves safe. As a parent, this can make going out of the home, a much greater task to undertake. This is because there is a lot more to think about or be worried about. Once broken down, these symptoms can have significant implications on day to day family life. Thus, increasing the challenge for parents.
ASD.
Some examples of how ASD can impact a person includes; their ability to communicate, their understanding of how others may feel and their reaction to sensory stimulation. ASD affects people in different ways, therefore, can lead to a wide variety of different challenges for parents.
For example, a child could be non-verbal, which makes understanding the child’s needs more difficult for a parent. A child may be unable to cope in certain environments, whether that be loud, busy or overly stimulating environments. Parents of children with ASD, often go on a journey themselves of understanding how the ASD affects their child. Parents often have to make significant adjustments to their day to day family life. This is in order to ensure that their child feels comfortable and supported.
Dyspraxia, Dyslexia, Hearing/Visual impairments or Learning Difficulties are amongst a range of other needs that parents can be faced with. All of which, present parents with specific challenges that require adjustments to family life or at times, sacrifices to the parents personal lives. There are a huge number more of SEND needs a child may have, too many to mention. However, regardless of the need, parents deserve praise and recognition for meeting these challenges.
All parents deserve recognition.
The variety of challenges parents face, is vast. However, what is consistent is that all of these parents deserve praise and recognition for their ability to cope and meet these challenges. Often these challenges are long term. As a result, it often takes self-sacrifice, incredible amounts of patience and an open mind to learn and try new things. It is not always appreciated or recognised by the child, however, well done to all you parents out there who are meeting these challenges in a positive way!
2. The difficulties parents have in accessing support.
Inconsistent support.
In my experiences, support for children with SEND and their families, is inconsistent at best. In some areas, support is wide ranging, easily accessible and well utilised by families. However, there is a flip side. Some parents are desperate for support and cannot seem to find it anywhere. As a result of this, there are a number of families that have to try and cope as best as they can on their own. I could not imagine how difficult it must be as a parent, to need help with your child and feel like you have nowhere to turn.
Unfortunately for families, when support is found, it can often involve huge waiting lists that can span into months or even years. Therefore, a lot of families are left to cope for themselves, whilst they wait for this support. I imagine there are number of reasons why support may be hard to find or take so long to start. This could be funding, staffing or other pressures on services. However, the reality is that there are a significant number of families that are in need of SEND support. However, they are unsure of where this support is or how to access it.
SENDIASS
On the positive side, there are a number of examples of positive and helpful support services for children with SEND. The challenge for parents is finding where these are. If you live in the UK, a great starting point is finding out the contact details for your local SENDIASS team. (Special Educational Needs and Disabilities Information Advice and Support Services). These teams are located around the country and can provide advice and guidance on what support is available in your local area.
The patience of parents who are trying to access support should be applauded. All too often I meet parents, who have been passed from service to service in their hunt for support. This must be incredibly frustrating to feel as though you are being passed around. However, one thing I do observe is that parents of children with SEND, are extremely proactive in expanding their own knowledge, using whatever resources they can find and doing their best for their child.
3. The barriers faced with schools.
For children with SEND, school can often be a challenging and difficult place. On the other hand, when appropriate support is in place, it can be a nurturing and positive place. How positive or challenging school life is for a SEND child, is usually dependent on the needs of the child and whether or not the child attends a mainstream school or a specialist school.
Lack of support from some schools.
Unfortunately, I have worked with a number of parents in the past, who have felt completely unsupported by their child’s school. I recall an instance in which I was supporting a child who had a diagnosis of ADHD and was under assessment for ASD. School were aware of this, however, appropriate support was not put in place. The child was struggling to cope with school life without this support. Ultimately, this child was permanently excluded for his behaviour. This was despite displaying behaviours completely in line with his diagnosis, which could have been avoided if the appropriate support were in place to meet his needs.
This example is not representative of all schools and all families’ experiences with schools. However, this type of situation is unfortunately all too common.
On the flip side, there are a lot of schools that are committed to ensuring that their SEND children receive all the help and support they need. These schools will listen to parents, understand what the child’s needs are and make sure that the appropriate support is in place to meet that child’s needs.
School frustration.
As a mainstream school, there is only so much support that can be offered. However, from a parenting perspective, I feel a lot of the parent frustration can come from the feeling of schools not understanding the needs of their child. This can lead to the child or parent being blamed by school for the child’s behaviour. In turn, this can lead to conflict and a division between home and school.
When it comes to Specialist Schools, I have often found parents speak very positively about the experiences their children have. The challenge comes with getting access to these Specialist Schools. Places are limited and there are requirements as to the level of need a child has, before they are eligible to attend.
Barriers in schools.
On the balance of my experiences, parents of children with SEND often speak more on the barriers and conflicts they have with school, rather than the positives of support their child receives. I have a lot of sympathy for parents in these positions, as it often comes from a lack of understanding, or willingness to understand children with SEND.
Ultimately, schools face their own downward pressures in regards to student behaviour, attendance and attainment. As a result, anything or anyone who compromises these school standards could find themselves being challenged by the school. This can be regardless of the child’s needs or underlying causes.
However, within schools there will be staff that are understanding and supportive of children with SEND. It is unfortunate that sometimes the downward pressures schools face, seem to take priority over understanding and supporting children with SEND. Although I do reiterate, there are schools out there that are excellent are supporting SEND children. Therefore, it is important not to lose faith in all schools.
My hope is that if you have a child with SEND, you feel supported by the school your child attends and your child is flourishing. If this is not the case, I would again advise you contact your local SENDIASS team, or seek contact local support services for advice and support.
4. The parents often get unfairly blamed.
Blaming parents.
It may not be intentional, but it can be a common occurrence for parents to be blamed or held responsible for the behaviours a child with SEND displays. One of the ways this can happen, is when a parent asks for help. A parent could contact a school or local service requesting support for their child, who may have a diagnosis of a special educational need. I have seen on a number of occasions, that these parents are signposted to complete parenting courses. For many parents of children with SEND, this can be quite insulting.
Other examples are not so subtle. I have held conversations with parents in the past, who have been told it is their parenting which has led their child to behave a certain way. Only for the child to then receive a diagnosis for a specific SEND need in the following months. This diagnosis would explain in detail why these behaviours were taking place and what the triggers were. None of these triggers were the fault of the parent. This can sometimes be what plays a role in children not receiving diagnoses until their teenager years.
Late diagnosis.
Blaming the parent is an easy trap to fall in to, however it is the lazy approach to take. Doing so can significantly impact the confidence of that parent. Furthermore, this could create conflict with the parent and can actually avoid identifying the root cause of behaviour. Many children do not receive diagnoses until their teenager years. This has meant they have missed out on a lot of additional support they could have received, if they were diagnosed sooner.
I often find that parents of children with SEND are the most knowledgeable and committed parents. They will go to any length to help support their children. Blaming parents in any situation, is rarely a starting point that is going to yield positive results. However, doing so with parents of children with SEND, is particularly unhelpful. Unless you are a parent in the same position, it is hard to imagine the challenges they are facing on a daily basis.
5. Their commitment and desire to fight for their child.
Resilience, patience and commitment.
My final reason is simple. Parents of children with SEND are extremely passionate about getting their children the help and support they need. They have to fight for their child, and they do so no matter who, what, when or where.
The referrals, assessments and processes to get support, can take years. In the meantime, parents have to do all they can to manage and meet these needs on a daily basis. Dependent on the level of need, this can have a significant impact on family life and family relationships. I can speak for this personally, as I grew up with a family member who had a SEND need. This presented incredible challenges for my own family and impacted everyone’s relationships with each other in the home.
My personal observation is that SEND support services are simply overwhelmed. There are huge numbers of referrals and simply not enough staff or services available to meet this demand. This creates a culture of parents having to fight for every bit of support their child needs. This must be incredibly frustrating for parents and they deserve a huge amount of credit for their resilience, patience and commitment to their children and getting the best for their child.
Summary.
As noted at the start, this post was my way of showing some appreciation for the parents of children with SEND. These parents face daily challenges that come in different shapes and sizes. They are having to do so in an environment which currently does not have enough support available for families. Parents are having to fight with schools and professionals to get their children the help they need. This is whilst also fending off notions that it is all a result of their own parenting. Having worked with so many of these parents over the years, they have taught me so much about the challenges parents face when it comes to SEND needs.
This post may come across as rather cynical towards the support that is out there. However, it is simply repeating what I have been told first-hand from many families I have worked with, alongside my own observations. I am sure there will be a number of families out there, who have had nothing but positive experiences in accessing support. It is my sincere hope that eventually we can achieve this for ALL SEND children and families.
Question for the comments: What support services have you accessed that has been helpful to you or your child?
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I love this post! this is brillant. As a parent of a child with special needs this post really spoke to me
Thank you so much for your comment, I am really pleased you enjoyed it!
And the parents I really respect do not only fight for their child.
But for all the children and adults in similar and different circumstances.