Special needs siblings also need support

27 February 2015

Dear Son,

Today you turn 6. My baby is 6 years old. Every day I am thankful that we have you. You are my funny, loving, cheeky, sweet, amazing boy. My favorite moments of the day are when you squeeze your body so close to mine it feels almost like we are one person. I adore our closeness. You understand that sometimes I need to feel our connection. Your sweet whisper of; "I love you more," is the best sound in the world. I want to thank you for lighting up our life, making it fun, exciting, better!



I am so proud of you that I could burst! You are an amazing brother, the love and understanding that you show is unbelievable for your age. You seem to have a sixth sense. You know when to walk away and when to give support; "Bro that happens because of your autism". You have an old soul, as grandma says; "I'm sure he's been here before!" Big lad could not have a better brother. I hope your relationship continues to grow!

I have read the articles, discussing the problems facing siblings of autistic children and want you to know;
  • It is ok if you sometimes feel embarrassed about your brother's behavior but never be afraid to bring friends home, not everyone will get it and that is their problem. You will discover who your real friends are! 
  • I will try and give you space when you need it. I understand that sometimes you may prefer to play at friends. (I'll tell you a secret, sometimes I need space too.) 
  • I will always try and give you 'our time'. There will be times when your brother demands attention but be sure your turn is coming and I am always thinking about you too! 
  • You are important and your problems are just as important as your brothers. Know that you can tell me anything! 
  • Your brother is not your responsibility. You have your own life to lead. 
  • You are not expected to make up for your brothers problems by being the best. Just be yourself! 
  • I will make mistakes! But I will always love you!
I will always be here for you.
We know your brother has special needs but my darling you are special too!
Never be afraid to talk to us about your feelings or worries.
I know you will have some problems, everyone does but I hope that you will be lucky in life.
Continue to find fun in everyday things and you will be.
Just be you!

I love you to the moon and back!!!



Flying 2: Give disability priority

23 February 2015

Dear Friend,

We made it! I am laid in my old room, in my old bed at my parents house. My body is still working on Dutch time so I am awake early, with only the darkness and my thoughts for company.

The journey here was fine. Bypassing the luggage check-in meant less time cueing and so we arrived at the gate early. The boys were happy playing on their computers.

Whilst patiently cueing for passport, I watched priority travelers whizzing through their separate section. I kept the boys busy talking and warned the little man that I was indeed his mum. I haven't renewed my passport since I married and it is in a different name to the boys. The last time the passport control officer asked little man who I was he replied by telling him my name (not saying my mummy) Passport officer: No who is this? Little Man: repeated my name loudly. (My husband stood at the side laughing.) When alone I travel with a copy of their birth certificates!

Getting on the plane customers were given priority: disabled and elite members. We waited while people, who should know better, jostled for position with me my 2 kids and 3 bags. (Shame on you!) The whole situation sheds light on my sons invisible disability again. Ok he wasn't freaking out but he was uncomfortable, stressed, repeating the same question, pacing, fidgeting, not enjoying the situation. What would make this better for him?



I don't want to highlight my boys disability. I don't want him to be given a high visibility coat or special card to wear round his neck. He doesn't want to feel any more different. I just want to reduce his stress (and truth be told mine too). How hard would it be to make disability a priority?

Airlines, cinemas, restaurants, public buildings/spaces listen please... Look to the example of theme parks like Disney who are giving passes to their autistic, Down syndrome, special needs customers and making their experiences better, less stressful! Make all disabilities a priority!

Surely we have got our priorities wrong when only those who can afford to buy the best treatment get priority?





Flying...

21 February 2015

Dear friend,

Tomorrow I fly to the UK with my kids. Alone... (Hubby has to work.)

Do people really understand that it takes a week of planning? The house is clean. The beds are changed. The ironing is done. Cases stand packed. We have it marked on the calendar and have been counting down the sleeps...

The message on my phone tells me that it is time to check-in! Panicked searching for passports and loyalty cards ensues. Then the baggage...

Why have companies decided to cash in on their loyal customers again by forcing us to pay for the luxury of checking in our cases? Shit, I forgot about this!!!

Time to repack; in 2 hand luggage cases. Need a trip to the shops for the cute toiletries (will one bottle of deo be enough?) Can I manage 2 bags? Should I give the boys a back pack or will O be too flustered at baggage check???

The little man has his birthday in the UK. That means extra 'stuff', can I fit everything in on the way back? To be safe I better go and buy a new hand luggage case...

God all this stress because some money grabbing bloody airline has changed its policy. Just pay the extra 30€ per case...

No, it's a matter of principle. And on a massive positive, I don't have to wait at a huge line for check-in and more importantly neither does my big lad.

Which brings me to another point Mr or Mrs airline. My autistic son waits in that line for what to him feels like an eternity...

Where is your disabilities policy? I can ask for help when I book but we are capable of walking to the gate. I don't need a lift there!

My son's disability can not be seen but it is there! Any help to reduce his (and my) stress, waiting in a never ending line of hot, harassed people, checking their passports every too minutes, ramming their trolleys into the backs of our legs and staring, judgementally at my too loud and fidgety children...would be appreciated.

I am traveling with 2 children (one autistic, 1 aged 5) checking a case is not a luxury it is a necessity and one that we should not be charged for!!!

Rant over. Cases repacked. Fingers crossed I won't forget anything and it isn't a bumpy ride!

Family and friends. Here we come...





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