Nobody informs us, that when we become Parents to a child with any Special need, we will embark upon a journey of self discovery, self-improvement, and gain an ability to speak up for and determine the course of another person’s life.
The ability to be your child’s Warrior, does not come easily or quickly. It is a crescendo of feelings,emotions and circumstances, which when blended together,create a new force and ability within the Parent’s very being, which will stand you throughout the test of time. It will teach you to gain skills you never ever thought you could have, and with a depth of feeling you never felt to experience in your life. Such is this strength to fight for it, that it almost becomes a dual preservation of both you , the Carer and Parent, and the young person with SEND whom you battle for and fight on behalf of!
It matters not, whereabouts on your enlightenment journey you are at, or which path you choose to take throughout, there always will be the element of personal growth, because without this child, you would not have to become, half of the person you are adapting to be. Special Needs, makes good people, who become exceptional, because if you do it with as much love and passion as many of us do, you cannot fail to achieve the attainment level and understanding of situations and also people, that you can, if you allow yourself to be taken on the journey, and accept that it is your fate to do so.
The journey which we are travelling on, is not undertaken by choice. None of us choose to be in this situation and so the only actual control we have, is in the decision to be brave and follow our destiny with strength and courage. Or not! The choice is up to you. Acceptance that you have to do this, immediately frees you and gives you the first victory in battle! The next battle you undertake lasts indefinitely, and this is the one which takes the most courage to face. For, you will never again be free of making decisions and fighting battles for your child. That war continues throughout their life.
However do not fear this, as life with your child will equip you efficiently if you let it, to fight your battles and be the most important voice and Warrior for your child! Learning skills along the way, is essential and necessary, as you will be called to battle many many times in your child’s life, throughout all the transitions they go through.
For our journey, I did have a head start, in that I am an early years Professional, so some of the skills vital to being a good warrior for Jay, were already in place. But let me tell you, that gosh have I learned many along the way, that I never had. Unfortunately I was not prepared for how many times I would be called to the front line, and this is why I feel happy that I can pass this wisdom on.
The isolation we feel, when we begin our journey is overwhelming. At this point, we are all in no man’s land, unable to maneuver the path. Obstructions prevent us from seeing clearly, and the fog we stretch out our arms to break free from, continues to rage inside us. We do not understand. We do not know what to do. We cannot see our way ahead to victory, neither can we process the very real prospects we face. Time is and always will be a great healer. Along the path to discovery, we slowly and at times, insignificantly, piece together the puzzle and by use of strategy and perseverance, we find our way through. Until, finally we reach the point of clarity, at which stage we may leave the battlefield’s isolated and lonely place of no man’s land to begin the next phase in the battle, which is to actually gain victory.
“There is a peace only to be found at the other side of war. If this battle should appear I will fight it” MMm this quotation is not to taken in the literal sense. It popped in to my head just now from a movie I once watched and was spoken in the story by King Arthur’s character. It is true. No person if sane wants to go to war or battle if it can be avoided. WE do not desire this fight, or the battles we face. We would prefer to live in peace. But the thing is-in the case of SEND Parents, it is the fight that develops our characters, and makes us become strong Warriors. We have no choice but to fight it, else we fail our children. That is way worse. We cannot fail them. We have to go on and battle for their rights. It should not be this way. It is not how it should be. Yet would we be strong enough to face the everyday stresses, had we not been trained in battle? Would we find the mental and physical strength to go on, had we not found it in the combat we have faced and endured and come out of with skills we did not have before?
I believe that what we go through, fashions our characters for the better. Just as the bravest of soldiers gain their honour through fighting for good and peace. Again, lets not take this in the literal sense. We do not need to, because these soldiers who fight for real are amazing and I salute them, but in metaphoric terms the ability to see it through these ideas ,reminds us daily of how strong we are. To put yourself on the enemy line for another is the most honourable thing a person can do, so let’s remember that, before we embark on yet another battle for our children shall we? Let us give ourselves the merit we deserve and realize that what we do, and millions of Carers in this world do, is an honourable healthy and strong thing that commands respect too. I have been told by people that they do not know how I do it, and that they could not put another’s life first above their own to the capacity we do, and that it would drive them crazy.
Well, my answer to that is, you never know what you are capable of doing until the situation arises and you are faced with it.We choose to stay and fight, or run away. Simple as and many people have run, and that is very sad, thank goodness most of us make the right choice, whether we are strong or not, we try.
Lately I have had to go to battle a lot for Jay. I feel like I have always found my way and achieved for Jay whatever we have requested. Lately, this has changed. Ever since the Summer, Jay has found things so much more difficult. His issues have spilled over in to his School life, and in to his Respite life too, and for months I have been trying to get him 2 to 1 for outdoor activities and swimming. Those who read us a lot, know that Jay has Extreme phobias ,high anxiety, and sudden Sensory reactions to things, which affect his daily life especially in Summer. Recently his Sensory overloads have become worse and I attempted to add support so that he can access outdoor trips more and swimming. For Swimming it was granted because of safeguarding issues when Jay is in Sensory overload in water, but I was told that I could be reassessed for 2 to 1 but I would lose some of the sessions we have. This I am afraid, is maybe due to cuts, as it was never this way before ,if you needed to increase your child’s support it was assessed and added on. Now they seem to be saying they would use your other hours to fund it which is crazy and unfair and dishonorable. I am sorry but as a person who is always honest and conscientious, it really prayed on my ability to see fairness. To take vital support away , if the Carer genuinely needs more support for their child for safety, is just wrong and shocking. So, I politely declined the reassessment and said that Jay’s hours with Respite are vital to his mental well-being, as so many times, the activities he does including sensory activities have saved him from bad days, and enabled him to have his mind diverted from the Sensory overloads. It also helps him learn to communicate and socialize and gain confidence in being in the outside world, something which he struggles with and without his Respite team cannot do. So, the question of taking this support away or reducing it to pay for a 2 to 1 ratio was not going to happen. Jay is safe with his respite team, I must stress this, I just felt his reactions were so extreme now, that extra support seemed the right way to go. The fact is I could’ve fought this particular battle, but I chose not to because I was afraid to lose, and lose what support he has. Fear was real. I feared losing the vital lifeline we had. It feels as though this new system with the funding we get from the Local authority source, could make dam sure people do not ask for help if they fear they will lose existing and agreed support.
The above information is not up for debate. I merely shared it with my readers to give a clear example of fighting battles for your child. When we claim support for them, we fight. When we try to get them in to the right School , we have to fight. When we try to secure funding, we have to fight. When we have to keep them safe, we have to fight. When we need to educate the public we must fight or Professionals who may not know how to help them, we fight to make our voices heard. We always have a battle, and trust me, with two non-Autistic Children I have known a normal life without battle, and life was so much more simple then. I have Jay’s Education and Health care plan annual review coming up soon. In 2016 I fought to get Jay that plan, and in 2017 I fought again to get him in to a Special School, we all of us with children with SEND fight, all the time and it is incredibly draining emotionally and physically. Yet like I said earlier, along with this fight, comes skills we gain, which give us the tools and strength we need to go through life being the voice of another who cannot speak for themselves. The ability to go through life being a strong Warrrior, a protector of another, whom we would fight any enemy for and lay down our life for, as they are the sole reason we embark upon the journey no matter what it throws in our path-we will prevail!