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. 

J Cole, his song JoDeci and my opinion

You may have heard the song on radio or YouTube. I didnt hear the song that way. No I learned about the song when I happened to read a post about JoDeci. I dont care about the word retard it really doesnt bother me. 

No what I found troubling was that there was no attempt to use proper grammar and make sure the song made sense. None at all. And, it is not acceptable to use the word nigga in so many lines, either. 

The song is completely senseless. Next time, write a song which makes sense to me and many others. 

The unknown Mami

If you dont know who Unknown Mami is, that's okay I understand. Unknown Mami has another name, Claudya Martin- her real name. I found out about her, when I read a post about her at AutismWonderland. 

AutismWonderland is sort of like Alice in Wonderland. Except, the blog is written by a lady named Lisa. So.. lets get back to Unknown Mami, then. Claudya has a blogging website, not just a blog on WordPress or Blogspot. 

Here is the link http://www.unknownmami.com/. I was going to write about Drake, but this somehow seemed more important. And, I will write about him and JoDeci- song name soon, I promise. 

I almost forget about AutismWonderland. If any one is interested, I have put the link at the bottom of the post. And, it has artwork. Of all the blogs I read, hers is the only one with artwork. Makes AW stand out. 

http://www.autismwonderland.com/

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. 

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. 

Despicable lady forces a disabled child to leave

Over the weekend, I happened to read an appalling article in the Sun. The article was about a crazy Costa worker who made a family leave. Her reason, another customer moaned and was 'put off' is not a good enough reason. 

My opinion is that Costa should have told the customer who had the audacity to make up such a terrible excuse, to get out, instead. Staff said other people were also uncomfortable  too. Costa if that is true, why not insist that the uncomfortable customers leave or stay and keep quiet. 

Or, even better, apologise to the affected family and insist that those shallow customers never come back. All of those options are far more sensible than the one that you actually did. What is worse, the moaning customer got a free cup of coffee because it was 'inconvenient' for her.

A fifth choice would have been to teach the lady to handle such situations better. I dont agree with some posters who said that Costa should be blamed. Because I dont think this one incident reflects on the whole company. Let's face it, that is not possible. 

She should never have got a free cup of coffee. Another lame excuse issued by Costa covering their asses, no doubt about that. I dont get why the worker must go along with the needs of a difficult customer either. 

(Sorry to Linzie, I needed to write about the issue. In a different way though, I dont do outright copying). 

All about BabyCenter

In case you dont know, BabyCenter is a popular website used by parents. The website went live in 1997. Since then, the website has helped 100 million parents worldwide. Baby Center is what I would call a educational informative site. 

BabyCenter has offices in America and international sites. The BC team includes bloggers, editors and designers. There is a doctor who is part of the Baby Center team and his name is Dr Harvey Karp. He does the monthly Q and A. 

Being a site member has numerous benefits. Some of them include, using the forums, signing up for newsletters and entering competitions. Users can read and comment on the BCB- Baby Center Blog. 

Members get access to free parenting apps launched by Baby Center for the iPad and iPhone as well. I think that they also have the chance to write their own reviews of the apps as well. 

Another two great things, that members do are look at recipes and check out some wonderful baby deals. You can also view current jobs at Baby Center. But, I am not sure how you go about applying however.

This post is the first in a series which look at sites. If anyone is interested, please leave a comment on the post with your name. 

UPDATE- There are more things but it would take too long to list them all. Therefore, quite frankly, I am not going to bother. BTW, here is the link- http://www.babycenter.com/. 

A teen sails a boat in the English Channel alone

Today is Independence Day. It seems only right that I write about the teen girl Natasha Lambert who managed to  sail a boat alone. Sailing a boat is a difficult task for anyone let alone someone with cerebral palsy. Natasha is not new to sailing either. This week she managed the challenging job of sailing that boat using only her mouth. 

Natasha completed the 25 miles in under five hours. Along the way, she defeated fog and steered her boat by puffing. Mr Lambert, her father built the device for her. Natasha raised money for 3 different charities. In 2012 she raised over £12, 000 alone for the same charities. 

Natasha experiences freedom and control whilst sailing. She added" Its about leaving my wheelchair and feeling free". 

A post about nothing which is about something

I decided to post recipes and reviews on this blog from now on. I also realised that it is pointless to keep posting about different topics all the time. Its okay to do so from time to time though. 

But I decided to keep the posts as I cant be bothered to write out twenty four posts all over again. I will delete them later at some point however. Much much later, like in two or three years, perhaps. Plus, it is a waste of time. So here's another recipe for you to read. 

Name 

Cauliflower cheese

Ingredients required

Potatoes

1 cauliflower 

1/4 onion( must be diced)

Butter/margarine 

1 tbsp plain flour

450ml of milk

Grated cheddar cheese

Method 

Put some small or cutup potatoes in a large pan and cook. After five minutes, add a cut up cauliflower or broccoli. 

To make the cheese sauce

Fry a onion quarter in some butter or margarine. Put a lump of margarine next to the onion to melt. After the margarine has dissolved, add a large tsp of plain flour and mix it in. Add a   small amount of milk to the mixture. Again, make sure you mix the milk in. Throw in more and stir it again. 

Then chuck a big handful of the grated cheese in as well. Next, drain the potatoes and cauliflower and leave in a oven safe dish. Pour all over the cheese sauce and sprinkle cheese on top. Bake in the oven for 15/20 minutes at 180 degrees. In other words, use Gas Four. 

Variations

You could add sausages or chopped bacon to the cauliflower before putting the dish into the oven. The sausages could be vegetarian/Quorn/ meat ones.  

Another blog promotion post

Last night I realised I haven't done a blog promotion post for ages. The blog is called LoveThatMax. I hope you find the blog as interesting as I did. Here is the blog address for you http://www.lovethatmax.com/ 

However there are a LOT of posts, I should warn you. Dont let that put you off though. 

Disgusting and disturbing things that people say

I read a news article called what is CP. I thought the writer had some really weird ideas regarding CP. The article claims the brain can withstand damage. That is not true. The writer also thinks that there are risk factors which contribute to CP. 

The truth is you can have a wonderful uneventful pregnancy and your child still gets CP. I read the comments as well. Some of them are disturbing. One commentator posted a disturbing comment. Here is what she said( and I shortened it for this post). 

We are Gods instruments here on earth not only are we called to give physical care but spiritual care as well. God loves all of us and is too wise to make a mistake. Oh please Malila dont say such utter bullshit. How do you know God has never made a mistake, eh? And God doesnt give us more than we can handle, pah! I am laughing at your ridiculous comment. Plus, your English is terrible as well. 

Another commentator said this- I suggest all those affected to use Homeopathy. Dr. Durgass you do know that homeopathy does not work. I cleaned up the comment so that it makes sense though. 

The next comment is even more disturbing. It was written by a Indian living in India. I will paraphrase the comment for you here- Please tell me how you can cure CP. I cant find any solution for the disease. 

First of all, Shubham you cant treat or cure CP. It is not a disease. I get really annoyed when people claim it is a illness because the truth is it is not a sickness. 

Next comment on this post- Balanced diet, fresh air, exercise, good sleep. Avoid tea,coffee, soft and alcoholic drinks. Keep cool and calm. Doctors are sometimes wrong. Don't take any medications.

John those things are good but it wont work if you have CP. It is not progressive since it is a condition not anything else. Why cant you take medications? Because sometimes you just have to John. Please dont give such unrealistic advice, as people will ignore it. 

To the commentators above, stop thinking CP is curable. It is not, it is manageable. There is a HUGE difference, do realise and remember that. 

One last comment- Parents with children that have CP must not feel sad or feel if they are losing out on something. God will never give you more than you can handle. God knows you will care for the child. He will always make you happy. We will always be blessed and we must treat our children if they are normal.

Again, why bring God into this. He has ABSOLUTELY nothing to do with CP. Stop thinking he does. I agree we must treat them as normal but dont overdo it. However I disagree as God doesnt exist. And, he never has. Children with CP are losing out on a lot in life actually. Your claim that they arent, is totally untrue Marlene. 

The dangers of not vaccinating

This weekend I read a post about not vaccinating. I was shocked that people agreed with the post. I would have thought they would have disagreed with her. One commentator said her child was damaged by vaccine severely. 

Oh Janet, I find that almost impossible to believe, yes I do. You do know vaccine saves lives each year. But, you are taking a SERIOUS risk by not vaccinating. Janet it is vital that you get your children vaccinated. You will meet risky situations and then what happens then? I'm telling you, you will regret it someday. 

Claiming your child suffered damage is NEVER a good excuse. So please do not use that excuse again, Janet. A baby has to be exposed to germs, yes I know that. But, they should never be exposed to the disease, only the vaccine. 

Janet do you know vaccinating your children is one of the most important things you can do for their health and safety. The first is buckling them into a carseat. See, here's a fact. Women in 2nd world countries force their children to get vaccinated, that is true. 

Yet, we are refusing out of stupidity and unfounded fears I think so anyway. Why else would you refuse? I would get my baby vaccinated in a heartbeat and in the past, I have done so. Also Janet there is NO such thing as pro vaccine crazies. 

Please dont be so rude and describe us like that. We are not crazy, we are SENSIBLE. There's a big difference. Here's a link to the post below by the way. Read it if you want to. The post is written by Stacie Lewis.

http://blogs.babycenter.com/mom_stories/03202013-i-ignored-the-advice-of-my-daughters-doctor/

(CORRECTION. Some of the comments are about vaccinating, not the post). Sorry for that)

My opinion on the end the word retard campaign

This week I came across a blog post saying the word retard should be banned. The blog owner, Ellen also said it was not about the word itself, it was about respect. 

Banning the word retard is not going to improve the lives of the disabled even though some people idiotically claim it will. I cant agree with her or the campaign for that matter. I dont believe in banning words because I believe in free speech. 

And, when you believe in that, you cant pick the words you only wish to hear. Ellen doesnt believe the campaign is about censorship, she thinks it is about respect. I disagree it IS about censorship. Plus, I hate anything that claims to *help* the disabled and doesnt. Let me tell you, it is a complete waste of time and valuable resources. 

Simply asking people to stop using it will not stop antisocial behaviour. Nor, will it help to prevent hate crimes against disabled people. Basically, this campaign rewards people for doing nothing which is utterly disgraceful. 

And, the campaign was a failure right from the very start too. People will also feel they have made a difference when they haven't which disturbs me. I know Ellen received some disgusting remarks on her blog post. 

Those sort of responses should remind us that people are entitled to say what they want to.  I dont even believe that the use of the word retard is even a issue either. Treating the disabled with respect is a issue. And, we should focus our energy and attention on that. 

There is a wise saying a word is a word even if the word hurts. Also, the context the word is used in, is everything. 

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/

Blog promotion post

I thought I would do a blog promotion post. Hayley  is the author of http://www.downssideup.com/ a blog about Downs Sydrome. 

My name is Tharini