Advocating for your SPD Child

© Babs@spdsupport

Right after receiving a diagnosis, parents often begin a sort of grieving process for the perfect child that they think that they may have lost. It is worth remembering that your child has not changed a bit just because they now have a label for their difficulties. The label does not define the child, it describes the difficulties a child has and should be treated as a sign post to getting more help and support for them.
You may have realised a long time ago that something was not quite right, but you just couldn't put your finger on it, and to be sat in the Paediatricians or Child Pyschiatrist's/Psychologist's office and to hear the words of a funny sounding disorder mentioned may have had you in shock or maybe even denial.
Take some time out to work through the emotions associated with this grief. Get extra support from family and friends and even call on professional help, if needs be, to work through this stuff. It will only drain you mentally if you don't address it. Talk, talk, talk.

Go back to the professional that diagnosed your child and go through it all again. Ask all the questions you have been thinking about over the last few weeks. Ask them to explain anything you didn't or don't still understand. Ask them exactly what this means for your child's future, what can be done to help them, what support do they need, are they likely to require help from other professional sources? Is it their opinion that your child might need long term educational support (this is important for statementing puposes, a child with severe or complex long term needs may require a statement of special educational needs from the LEA).
Make a list of questions and ask them or they will continue to nag on your mind!

You will already have started to collect paperwork on your child. Notes from receptionists asking you to turn up for check ups, school letters asking for you to go in and see them or the school doctor. You may just have your initial referral letter from your GP, even so, now is the time to get organised.

You will acquire tons and tons of paperwork believe me, enough to paper a bedroom the size of "Posh Spice's"! So go and get yourself a ring binder folder and a hole punch and save the lot.

Why do I need all of this you might ask? Well, when push comes to shove down the line, and there will be moments where you will have to "bump heads" with professionals over some matter or other, then you will have your evidence to call on.

Anything written to you, reply back to as soon as possible, in writing, confirming what was said or agreed upon and the action that will be taken. If school wrote to you to say that your child will be placed at School Action Plus and a review of his progress will be made in February, then reply thanking them, confirming what was written to you in the first place. Get it on their files in duplicate. Very important!

By now you will have been trawling the internet and libraries looking for information. You will have now entered a place that is full of mind boggling words and information about this disorder. Long words might seem alien and way over your head. What on earth does all of this mean? I don't understand this, it's too complicated! I will fall asleep trying to read these long papers!

Let me tell you, little by little it will all come together, you will get familiar with the terminology and the complexity of the writing. One day in the future you will come back to a paper you read, say a year before, and had thought at that time "Oh my, I can't get my head around this!"... Well, you WILL be able to understand and fully appreciate what it is saying with time! The day will come.

Start to read and save anything you can find about SPD or indeed SLI (Specific Language Impairment) and HFA (High Functioning Autism), for knowledge is power!

Now that you kind of have a feeling for what SPD is and means for your child, now you can start to look at your child's strengths and weaknesses. This can be upsetting. You might just see how vulnerable your child actually is, BUT, on the other hand, you will also see how wonderful he/she is and all of the strengths he/she has too. Write a list of all of the things they are not so good at, and then also a list of all of their strengths. The strengths will help support and combat the weaknesses. Here is a list of some of the areas you should be concentrating on, and afterwards some general questions. The male gender is used for ease of writing.

YOUR CHILD'S HEALTH

• How well does your child sleep?
• Does he eat well?
• Does he require any medicines or does he require a special diet?
• Does he seem tired all of the time?
• Does he lack concentration?
• Is he absent from school frequently due to illnesses?
• Does he wet the bed?
• Does he seem generally lethargic and lack motivation?
• Is he always forgetful?

YOUR CHILD'S COMMUNICATION SKILLS

• What is your child's speech like?
• How well does he appear to understand language?
• Can he communicate a message to and from school?
• Can he speak in well formed sentences?
• Can he talk about events easily or does he struggle to tell you about his day?
• Does he respond to you calling his name?
• Does he appear not to hear you sometimes?
• Is he able to join in conversations and make appropriate comments and stick to topic?
• Does he understand meaning?
• Is he able to follow directions?
• Does he seem confused when he is given a task to do?
• Does he become frustrated easily and try to communicate by tantrumming?
• Does he have word finding difficulties?
• Does he get his words muddled up?
• Does he have false starts and hesitant speech?
• Does he take everything literally?
• Does he not appreciate humour and not understand complex language, for example, jokes or idioms, like it's raining cats and dogs?

YOUR CHILD'S BEHAVIOUR

• Does he tantrum?
• Is he angry?
• Can he share?
• Does he show affection?
• Is he un co-operative?
• Does he listen to an adult's requests? Does he have mood swings?
• Does he show inflexibility? Does he avoid change?
• Does the family have to work around what he wants?
• Is he aggressive?
• Is he fearful? Defiant? Impudent?
• Is he stubborn?
• Does he disturb other children?
• Does he cry a lot?
• Is he restless, or over excitable?
• Does he fidget?
• Is he a daydreamer?
• Does he steal or lie?
• Does he have a short attention span.
• Is he easily distracted?
• Does he have unpredictable behaviour?
• Is he very serious or sad all of the time?

YOUR CHILD'S PHYSICAL SKILLS

• How well does he walk? Run? Climb?
• Ride a bike?
• Catch or kick a ball?
• Can he play team games like football or rounders?
• Does he have difficulties writing?
• Drawing?
• Cutting out?
• Doing jigsaws?
• Can he manipulate small things, for example, can he sew?
• Can he thread beads?
• Can he do up buttons and zips?
• Tie his shoelaces?

YOUR CHILD'S SELF HELP SKILLS

• How independant is your child?
• Does he lack organisational skills?
• Can he get dressed on his own?
• Does he put his clothes on in the right order?
• Can he brush his hair and teeth?
• Can he wash his hands and face?
• Does he struggle to eat with a knife and fork?
• Is he able to use the toilet by himself?
• Can he tidy up his toys?
• Can he remember to bring messages home from school?
• Does he forget his homework books?
• Does he lose personal items at school?
• Does he need reminders?
• Can he see dangerous situations?
• Would he know what to do in one?
• Can he ask for help?
• Would he be able to speak up and stand up for himself?
• Would he resort to aggression?
• Can he cope with the day to day routine of school?

YOUR CHILD'S SCHOOLING

Does your child enjoy school? Does he find any work difficult? Is he making progress with reading, writing, number, and other subjects at school? Does your child try to avoid school? Is it difficult to get him dressed in the morning? Does he have a lot of tummy aches last thing at night and first thing in the morning? Does he wet the bed? Is he making friends or is he always on his own? Does he participate easily in the group? Does he pay attention? Does he tantrum when he sees you after school? Does he refuse to do homework? Is he generally stressed by the school day? Does he have difficulty with out of routine events, for example, a regular teacher being away, or a change to the school routines during the Christmas period. What help do you think he needs at school?

YOUR CHILD'S LEISURE AND PLAY

How does your child spend his time? Does he prefer to be alone? Does he have any hobbies or pastimes? Does he take part in any out of school activities such as football club, ballet or music club? Does he socialise well? Does he make friends easily? Can he play with other children in a group or does he seem better playing one to one. Can he play board games without tantrumming? How about team games? Can he share easily? Does he play with toys in the manner in which they are intended for, or does he break them or use them in another way? Does he enjoy watching television and videos or does he insist on watching the same thing over and over again? Does he hate to lose? Does he always have to be first? Is his behaviour unpredictable needing plenty of adult guidance when playing with other children?

YOUR CHILD'S RELATIONSHIPS

How does your child relate to you? Does he have sibling? Does he play well with them? Do you have any pets that he is close to? How is he with your pet? Does the family always have to work around what your child wants? Does your child seem angry at you all of the time? How do you go about discipline? Does your child show you affection? Does he dislike affection or being touched? Does he cry and tantrum when you ask him to do something? Does he hit you, push you, bite you, kick you? How is he with Grandparents? Teachers? Does he isolate himself from the family and prefer to be on his own in his bedroom? Is he easily calmed from a tantrum? Does he make demands that must be met immediately?

GENERAL QUESTIONS TO THINK ABOUT

How does my child compare to other children of the same age?

What are his strengths?

What are my immediate concerns?

What are my worries for the future?

How do I think my child's needs can be catered for?

Is my child aware of his difficulties?

Does my child worry about his difficulties?

Who would you like more input/help from?

Does my child have to cope with any other difficulties, for example, a parent who is on their own? Or a sibling who also has special needs. Have there been any recent bereavements that might affect your child? Has there been any major upheavals like a house move recently?

Ok, next thing you will need to do is learn about the law. You will need to become acquainted with the education and disability laws in order to become a good advocate. The DFES (Department For Education and Skills) website is a very good source for all of this information. I keep up to date by following the School Governor link on the DFES SEN site. There is some good information to be found on there. The basic documents you will need to get hold of, which you can order or download online are

SEN Code of Practice 2001
SEN and Disability Act 2001
SEN Toolkit 2001
Special Educational Needs-A Guide For Parents.


You should also visit the KEY DOCUMENTS PAGE on this site.

ACE is the Advisory Centre for Education. This is another great site and great organisation. They have been a big support to me in the past and will give you very good advice on the telephone.

Find out as much as you can about what you should and shouldn't be getting in terms of support for your child. Become familiar with the terminology that is used by schools and LEA's and the statutory duties and guidance that they must follow. You NEED to have, at the very least, a copy of the Code of Practice, so order one today!. It is completely free and whilst you are waiting to receive it you can view it online along with the SEN toolkit, which simplifies the Code.

You will be well on your journey by now and you will need to keep a check up on your health and relationships. Do NOT let your child's disorder dominate your everyday thinking or your relationships will start to suffer. You must take time out to recharge your batteries. Do something just for you at least once a week. Plan time alone with your partner or if you are a single parent, with a close friend.

Make sure you shut the books and switch off the computer or you may be at risk of losing a sense of perspective. The more you read up the more you may exaggerate your child's difficulties. Does he really do these things you are reading about, or are they just once in a while? Are they traits that are found in all children and you are having unneccessary concerns? Be realistic. All children will tantrum, for example, but it is not realistic for a child to have one every five minutes and take 30 minutes to calm down.

Keep an eye on how you are responding to your child and indeed your family too. Are you shouting at your child and family unnecessarily? Are you maybe smacking your child when you know you shouldn't be? You may be under stress if you are feeling tired, worn out, angry, defensive, cannot seem to get motivated to get up in the morning, feel like every day is the same and you have no life of your own. If you feel like this, it is vital to get help quickly.

Coping with the demands of a Special Needs child is something which requires an awful lot of strength, patience and an inner sense of calm. Your child will pick up on any negativity and will react to it. Make sure you think about YOU first, eat well, get as much sleep, rest and relaxation as you can, get emotional support from someone you trust and you can rise to any challenge that your child might throw at you.

Do all of the above and remember these last few rules and you will become an extremely formidable advocate. One who knows their child better than anyone else and one who also knows what the diagnosis means, what their child's individual strengths and weaknesses are and what their child is entitled to by right.

• REMEMBER YOU KNOW YOUR CHILD BETTER THAN ANYONE ELSE
• TRY TO BUILD A TEAM OF PROFESSIONALS THAT KNOW YOUR CHILD
• KNOW THE RELEVANT LAWS
• KNOW WHEN TO STICK TO THE LAW RIGIDLY AND WHEN TO USE DISCRETION
• BE A METICULOUS DOCUMENTER AND FOLLOW UP ON CONCERNS
• SHARE THE INFORMATION YOU HAVE BETWEEN ALL RELEVANT PEOPLE CONCERNED WITH YOUR CHILD
• DO NOT GET PERSONAL
• BE PREPARED TO GIVE AND TAKE BUT STICK FIRMLY TO YOUR BELIEFS OF WHAT YOUR CHILD REALLY NEEDS
• PRIORITIZE YOUR GOALS
• GET INDEPENDENT ASSESSMENTS IF AT ALL POSSIBLE
• IF RELATIONSHIPS BECOME STRAINED KEEP DIALOGUE OPEN AND REMAIN CALM
• TRY NOT TO GET EMOTIONAL
• PREPARE FOR MEETINGS WELL IN ADVANCE AND TAKE ANOTHER PERSON TO SUPPORT YOU IF NECESSARY
• LISTEN AND LEARN
• AND LAST BUT NOT LEAST HAVE FAITH AND THE PATIENCE OF A SAINT!

Written by Babs@SPD Support