Welcome to Afghanistan(CP version)

Debrief:

In the extra needs world, there is a poem called Welcome to Holland. It is often given to newcomers when their child is diagnosed. This poem misses out the horrible parts of raising a child with extra needs. 

Here is my version of the famous poem:

You walk into the NICU crying. The NICU has signs in Arabian. You cant read any of them. The locals try to calm you down. The country is at war- you can never leave. You hear reassuring voices and you feel better for a few minutes. 

The truth is this NICU in Afghanistan is like hell for you. However, that terrible feeling in your stomach doesnt recede. Not only that, you think a fresh new wave of fear will come. You are so sure of it. 

You walk on past some people who are talking. Although their voices are low, you hear words like severe brain damage, CVI, epilepsy, seizures and CP. And, you get scared all over again. 

Presently, you look at your child. He/she is very happy and making progress. For the first time, that awful feeling abates a little. What's more, you allow yourself to feel hopeful. 

Each person will recover in their own way. Some people are naturally sunny and go straight to acceptance. Others take much longer and shuffle around. You must accept the fact you may be here for ages. 

Yet, you will leave Afghanistan with your boy/girl. That happens after a while. You learn more about the condition and realise all is not lost. And, your child will make progress.  

Plus, you will have changed for the better. Also, your child will have taught you some very important life lessons. Lessons you would never have learned otherwise. You meet people some people you may never have as well. 

The worst time of your life is over. You have left the NICU behind forever. Now, the only way is forward/up. And, things improve. You feel hope, grief and other emotions. Crying is good- it helps you. Eventually, you will stop crying and mature. 

© Tharini, all rights reserved. Date written- 24/10/2013.  

I wrote this for parents who have been forced into the extra needs world. I'm happy if you share this around. The more people I help, the better. Please tell me if you want to blog about it etc. And, remember to cite my name or link back to this post. Include my email address tharar65@yahoo.co.uk as well. The original poem was written for the DS community. My version is for the CP community. 

Thank you. 

Parents, 'normal' children and their lives

... Can be summed up like this: 

1- Will Henry/Melissa do well in school? I certainly hope Henry or Melissa get okay not good grades. Why must you be so pushy? Its not healthy for you. Just be grateful your child is not doing drugs, smoking or in trouble with the police. 

2- I hope Lyla/Pam do some sporty things. Of course they might. If not, NEVER force the issue, its not emotionally sensible. 

3- I want my child to be married. That is a possibility. Again, forcing is not a good option ever. 

Mums/Dads of children with needs lose on the 'expected' stuff. Maybe, not all but they do lose out on some. Over time, progress happens and goals are achieved. Parents of children with difficulties are more thankful than normal mamas/papas. 

Message for typical families- If the things above are your only concerns, be grateful and dont moan. Typical parents look at your child's accomplishments again and celebrate them with your offspring. 

I happened to read a excellent blog post on the subject a while ago. Today, I thought I would write my own version of it. 

Disclaimer- this is not a copy. Like I stated in a previous blog post, I hate copying. Its plagiarism, not sure how to spell it rightly. 

A charity called Scope

Scope is a UK charity for disabled children and parents. They offer a range of services including therapies, breaks and conducive education. Conducive education takes the form of schools for parents. As well as that, they provide information, support and help for parents. 

You can contact Scope via the contact section of their website. The contact details page includes a telephone number and email address. Their online forum is used by thousands of UK parents everyday. Scope also run a manned helpline for parents eight hours a day Mon- Fri. 

The charity run a number of campaigns. The new one is Britain Cares and the details are on this page- http://www.scope.org.uk/campaigns. All you have to do is press the I care button, its blue. But, participating in the campaign is entirely optional. There is also a list of previous campaigns below the current one. 

Scope have a Facebook and a Twitter account. Scope's Facebook page is here- https://www.facebook.com/Scope?fref=ts. SIDE NOTE- You dont have to like it though, again it is not required. I think SCOPE have been in the news, not sure when and in which newspapers though, sorry. 

And you can find your local shop using the useful shop finder tool. There are loads more of useful features on the website. I cant list them all, it would take forever. If any of you want to contact Scope, here is their email address response@scope.org.uk 

Colin Brewer, the former councillor

On one of my favourite blogs, the owner wrote a post saying Colin Brewer has now officially resigns (for lack of a better phrase). 

I guess I feel sort of happy he has gone but I never gave much thought to him. It never really occurred to me, really. Many special needs parents will be over the moon and rightfully make a big deal of the fact he left. 

Not only that, he has been banned from working with disabled children ever again. I must say I have mixed feelings about that. He has been asked to take a media training course as well. Not sure who told him though, presumably some annoyed man. Or, a woman. 

This despicable incident has done 1 good thing, it brought the disabled community together. Lets hope he does not take part in any future elections ever again. Oh and it forced people to protest and organise campaigns etc. 

As another blogger says, attitudes like his needs to change, he should make a effort to see beyond the disabilities. In other words, he should look at the abilities and personality, not the disability of the child. 

If you're new to my blog, please read my previous post about the man- http://thararavishanker.blogspot.fr/2013/05/colin-brewer-is-behind-times.html. It makes sense to read it, then you will know who he is. And, what he said. 

Tips for when your child with Downs is beginning school

Its that time of the month when you are sending your daughter/son off to school. Maybe, you had to get a statement of special needs for the child. 

Here are some tips

1- Let your child meet his/her future classmates. Invite them round for tea or lunch at your house. And, vice verse.

2- Take photos of the staff and pupils. Glue them into a scrapbook and write the names on labels. Then put the labels below the photos.

3- Allow your child to set the pace. It is wiser to start off small than to start too big and find you are in over your head. 

4- Encourage your child to show interest in their school clothes. Purchase plenty of cheap 2nd hand uniform. Leave 2 changes of clothes in your child's classroom.

5- Be friendly with the teachers. Talk about your child's day. Also voice any naggling concerns as well. 

6- Suggest ideas you know your child responds to well. Every child has a unique learning style, find out what your child's preferred one is. 

A useful charity called Cerebra

Cerebra is a UK based charity which aims to help brain damaged children and their carers/parents. As well as that, they do a lot of research into neurological conditions like cerebral palsy. 

In fact, there is a whole multitude of other things they do. Like, providing information for the parents. And, trained support workers who talk to the parents. What's more, they even help you fill out forms and attend meetings. 

Cerebra even run a grant scheme which funds equipment and services to make life easier,  their words, not mine. There is soo much help available and I cant explain it all, sorry readers. If you wish to learn more about Cerebral, here is a link below.

http://www.cerebra.org.uk/English/Pages/home.aspx. 

SIDE NOTE- Sorry for such a unusual short post, I am exhausted after a night of extreme dining and partying in Epsom. Obviously I paid the price, as they say. I promise a more detailed post next time though. 

I am off to sleep, I am that tired.

Ten toys for children with special needs

1- Cozy Coupe. This toy helps you strengthen your legs. You can go forwards or backwards with this toy. 

2- Rocking Caterpillar. The rocking motion makes you use the core muscles. The antennae allow you to hold on and stay upright using the arms. 

3- Shake&Crawl Racer. This toy is very colourful. It also plays music and can be easily moved as well. This toy wont stop rolling until the child shakes the rattle or rolls the ball on top of the car. Good for cause and effect. 

4- Poppity Pop Musical Dino. The toy helps the child focus and improve their vision. It also teaches the child to release things.  

5- Interstar Rings. These rings are easy to pick up. The texture is appealing and the design can be manipulated. 

6- Duplo Building Set. The bricks promote creativity which is a good thing. The parent can use them to help the child understand colours and sizes. The fabulous thing is that there is no correct way to use the bricks. 

7- Ice Cream Cone Playset. The pieces can be used in matching, stacking and counting games. The toy teaches the child to ask for what they want. Very good toy. 

8- Parum PumPum Drum. Another musical toy which can be used to help the child learn about colours and shapes. And, about textures. 

9- Brilliant Activity Bugs. This wonderful toy forces children to open their hands, finger isolating, use both hands and bend their elbows. It also provides the children with lots of fun and entertainment.

10- Zany Zoo. The toy comes with beads, pens, doors and animals. All of which will help the child to practise their fine motor skills. 

On Downs Syndrome and the new screening test

Yesterday afternoon, while surfing the Internet, I came across an article which discussed the new Downs syndrome screening test. I dont think women should be forced to take the test, not if they dont want to. Out of plain curiosity, I decided to read the comments section at the bottom. 

The first poster said" I think the test is wonderful. Care homes are not a option because he/she would be treated badly. Stop being small minded". What, does no one have trust in care home workers, then?? Also, sometimes care homes are a necessity. And, the people who dont abort, are not small minded and a coward, you are. 

The second poster said" Your job as a parent is to raise a child who should be independent". Not necessarily, sometimes the child will never be able to be completely independent. These comments are utterly disgusting and disturbing. Yes, raising a child with issues does require effort but if you cant do it, dont be a parent. It really is as simple as that. 

Next commentator said" Why bring a damaged person into the world when it can be prevented"? You seriously think Downs children are damaged, then? Okay, that shows you are small minded and a despicable person, really despicable. I never thought people would display cowardice and small mindedness. 

On the flipside, here is a positive comment. I dont know why it was worst rated it should NOT have been. "Don't get pregnant if you're not prepared and never forget you killed a child because you didn't want to make the effort and provide a little more help and support for longer". So true, I love the comment. 

Inclusion

Inclusion is a good thing. ALL parents should know it is actually. But, do they? In fact, inclusion for me, took on a whole new meaning after my cousin Nina was born. Some parents say you hurt the many by helping the few. Really, is that all you can say. Why must parents come up with crazy stupid excuses? 

To me, inclusion is not inclusion unless every one including the severely disabled are included. I also believe effective teachers are the ones who meet the needs of all the pupils. No one should be against inclusion. Inclusion is a good thing. It exposes children to all children. Whether that is children with CP, downs syndrome, dyslexia etc. 

The parents who have the cheek to say it 'disadvantages' my child are wrong and lack empathy, compassion and a open mind. Inclusion has many benefits. Including, the values I wrote about in the second paragraph. 

I never knew inclusion was a issue till I read this Telegraph article. Here is the link for it- http://www.telegraph.co.uk/health/children_shealth/3349996/Inclusion-Not-in-Samuels-case.html

I read the article and was horrified by the school's absurd decision. Where is their inclusion policy? Answer- they dont have one which is shocking.  The headmaster talked about 'inclusion' yet the school refuses Samuel. Doesn't seem like inclusion to me, does it? 

David Cameron's costly mistakes

This evening I read a article on David Cameron's new tax plans. You want my view on the matter then. Okay here is what I think it is a complete waste of our money and time. Why is he spending time and valuable money on a stupid tax scheme, eh? I will never understand that.  To me, it is bureaucracy gone completely bonkers. 

The fact he is proposing this plan while we are all poor is mad, simply mad. I still dont know why  he was too lazy to ring fence funding for councils in England. How can a father of a disabled child simply shove our children aside? It is completely immoral and distressing. He wants my disabled daughter to rely on the State all her life.

My 11 month daughter loves play and toys but cannot sit unaided. I looked at my 2 hands this morning and felt grateful I can use them properly. Anna's dedicated and lovely OT, physio, SALT, vision and social worker are all based in the community. All of them receive funding from Epsom/Ewell Council. 

Let me tell you, the less therapy she receives, the longer it will take her to be independent. I will never stop fighting for what my daughter needs in order to be independent. It makes very little, actually no financial sense to take the people and equipment which will help Anna, away from her. 

Congratulations, lets all hail and worship your idea of a Big Society. 

CP is a condition NOT a disease

Dear Commentators

One comment stated CP is a disease.

Well commentator, you are wrong. CP isnt a disease its a condition. Did you know that or not? CP is NEVER progressive or contagious. Your comment was pure disturbing and will only convince more people that it is contagious. 

Which is NOT what we want or need, sigh. Also CP varies and there are MANY different forms of it. Even the doctors know that. I wish someone told her she was wrong. 

Another comment said rules are rules. Yeah I know but sometimes rules needed to be broken and accommodations NEED to be made. 

And, do please show some empathy and compassion towards poor old Max. What is the matter with people. Are they so devoid of love that they cannot display empathy or compassion then? I dont get it. You all should be shamed and embarrassed of yourself. Here is the article the comments were a part of http://www.huffingtonpost.com/social/Ptown_Lady/max-wymer-pool-water-wings_b_1705783_171954694.html. 

That is utterly depressing and sad. Read them if you want. I dont even want to, as they are disturbing.  Here's yet another disgusting comment by a uncaring twat. Another example of people feeling the rules don't apply to them, sorry lady that's just how it works. Really what the hell is wrong with you? The commentator I mean. 

Of course the rules needed to be bended in order to accommodate Max. The life guards could have done that WITHOUT needing to call the police. The fact they did only shows that they have NO common sense whatsoever. 

This has to be the most utterly stupid comment of all. Excuse me if you have a special needs child and you need a device for them, why should the public pay for it?  Dear mean poster, the public has to pay to accommodate the disabled or disadvantaged. It happens here in England, why not America too, eh? Show some empathy and compassion. 

Last comment posted here in this blog post. The problem is that people with special needs seem to think they are better than us. What the fuck are you on about? I've never heard such a sadistic comment. 

I feel sorry for the Mama who was asked to leave. It was unneeded. At the very least the staff could have suggested a alternative. Did they? Nooo they refused to think outside the box which is a shame. 

I think the commentators suffer from a personality handicap. Which is FAR worse than physical handicaps. Never seen a lack of empathy so obvious than on that article. What is wrong with society, its like we live in the Dark Ages, sigh. Or, in a developing country? 

It seems I was wrong, yet ANOTHER retarded comment. Blah blah blah the exception should never have been made. Oh sorry unfeeling lady do you wish to discriminate against the poor old boy?  

Another heartless retarded comment. Shame on the mother for not caring enough about her child to keep him safe in the water by buying a flotation device that is approved and is truly life saving. For one thing he/she can't spell. And, he got that from where?? It is NOT stated anywhere in the article so dont give us that crap. 

Therapies for CP children

According to Wikipedia there are several different therapies available but I will cover three in this post. Therapy aims to help the child or young person acquire skills. Many different people can carry out therapy including parents and grandparents. 

It can even be done by the child if they want to. Qualified therapists include physio, speech and OT. They direct the session and help the child. Physio and OT help the child to improve or develop motor skills. 

Physiotherapists focus on skills such as walking, crawling, jumping, rolling and other activities which use the legs. They also assist with rehabilitation. Physio also use tests  which include assessment in their first session with the child. 

Occupational therapists help the child to acquire independent living skills. OTs also pay attention to normal activities like feeding or drinking. If needed, your OT or physio will order lycra suits, leg or arm splints or any other equipment deemed necessary. 

Make sure you choose a physio who is hands on and has worked with children with cerebral palsy. The same applies to the OT and the speech therapist as well. The parent should ask the PT if she/he is hands on. 

The parent should also check the PT has worked with children with the condition. I hope this article helps you. 

Colin Brewer is behind the times

To summarise, Colin Brewer said "that all disabled children be put down" in February. The comments were understandably distressing to a large number of people worldwide. 

Many of them, including Hayley G of http://www.downssideup.com/ urged him to give up his post and resign. And, he did after a hard hitting interview with Laurence of BBC Radio Cornwall. We don't need people with outdated and warped opinions any more. 

I want you to remember that the large majority of people are good and loving individuals. And, that only a few people with old fashioned views like Mr Brewer exist. 

Unfortunately, signing ePetitions or complaining to the Cornwall Council doesnt work anymore as no one can fire Mr Brewer. Here is a article by Mr John Pring of Disability News Service. Warning, do not read the article if you are easily upset or squeamish as the article is not a nice pleasant one.  

Here is the link http://disabilitynewsservice.com/2013/05/colin-brewer-there-is-a-good-argument-for-killing-some-disabled-babies/