A bittersweet day

First a warning - please don't read this post if you're feeling down. Pop back tomorrow for something a bit more upbeat. If however you have an interest in living with autism please read on...

Today is Toby's 5th birthday. Normally children's birthdays are a busy affair; a party, lots of presents, friends and lots of excitement on the part of the birthday boy or girl. Not so with Toby. Toby's birthdays come and go without him being any the wiser. He gets to eat more cake than usual (something he definitely appreciates), he gets some new stuff and he does quite like balloons but other than that he's completely unaware of the significance. I on the other hand find this day one of the most significant in my year. It's probably the hardest day for me and one I never manage to journey without tears.

It's impossible for me to get through this day without reflecting on what might have been had he not been autistic, what it would be like to have a normal family life and to be able to do normal family things all together. I mourn for his lost future - you never realise how much you take your children's future for granted (that they will grow, find a life-partner, have kids of their own and live mostly happy, fulfilling lives) until it's gone. Toby does have a future but it's a world away from what I would wish for him. It's uncertain and dependant upon others. I hope to always be around to care for Toby but I'm mindful of the fact that I'm 35 years older than him and it's so frightening to think that I may not be here to look after him for as long as he needs me.

His birthday is also a marker, a measure if you like of his progess and development. Autistic children have characteristically spikey developmental profiles. Which means that whilst he has the physical abilities of any 5 year-old, in some areas such as speech, play and social interaction he still scores at a 12-18 month old level. Only time will tell wether he will ever develop speech. He is making progress with communication using a picture exchange method (more of that another day) and so there is a hope that his speech development is just grossly delayed.

I carry my sadness deep inside and most of the year I genuinely feel mostly cheerful. I feel very lucky to be able to appreciate beauty and joy in small things such as the changing seasons, a beautiful sky, the song of a blackbird, Amy's laughter and Toby's hugs. This is the one day a year when it spills over and I let it. You need one day a year of self-indulgent melancholy - it's not good for the soul to bottle up any strong emotion. So forgive me my wallowing and please don't be put off visiting here again. I don't usually talk about how I feel like this but somehow it seems easier and a bit theraputic to write it down, a bit like making a paper boat and launching your troubles down a river on it - or maybe it's because the delete key is only a click away and so I can erase all this if I chicken out!

As Amy will tell you, one of my favourite sayings is "you have a choice in life..." something which I strongly believe. Today I am choosing to allow myself to feel sad, tomorrow I will be choosing to feel happy. So on a happy note here are some pics of Toby enjoying his summer...

 

Comments

[Cherry Menlove]

Oh honey! Thank you so much for sharing that with your readers. It is a part of your life, a vital part and it makes your family what it is. He is a precious boy and the pictures of him enjoying his summer are priceless. I'm afraid that you may have been given the job, along with many others, of informing us what life with an autistic child is really like. The highs and the lows. We may need you to help in our own situation one day. Don't grieve for the loss of what we presume is normal. Celebrate the life less ordinary as I know you will (tomorrow perhaps). Live in today, take from it what you need and we'll see you again tomorrow.

Much love
Cherry

Happy Birthday precious Toby! xx

[Ali]

Hope your paper boat sails far and fast and that tomorrow brings you more strength and small joys (the best kind).
Give that special birthday boy a big hug.

[Zoe]

Julie, I'm glad you didn't hit the delete key. Thank you for sharing your thoughts with us. Toby has a wonderful Mother in you and a lovely family. I am thinking of you today. The photos of Toby are so happy and lovely. With very best wishes Toby on your Birthday - give Mum a big hug from me.

[Rebecca]

You are brave to air your true feelings, you are stronger for letting it all out, you are a wonderful mother to grieve the loss of what we all hope for our children, and you are a loving mother for cherishing the future you do have together. He looks like a beautiful and happy little boy, and I don't think he could be anywhere better to help him through his journey. I feel like hitting the delete key too incase in my complete ignorance about autism I may have typed something to upset you ... so keep writing and help the rest of us to understand. Happy Birthday Toby. x

[Maddy]

Wallow away, I'm listening.

When Bailey was 5, and probably at his worst, I would draw smiley faces on everything to remind myself to smile. Your son is happy ... and that's what counts. I would feel the same melancholy and then look at my son and realise that it's me that's sad for his lost potential but he was as happy as could be.

Anyhoo as Scarlett O'Hara so famously said … “tomorrow is another day”.

:) :) :) :) :) ~*~*~*~*~*~*~*~*~*~*~*~*~*~ :) :) :) :) :)

[Julie]

Thanks so much everyone for all of your warm and compassionate comments. Today has been strange but probably less so than last year. I've felt more accepting and it's probably to do with the point Maddy made - Toby is happy, and made blissfully so by such simple pleasures- a wonderful quality in today's consumer driven society. Anyway we had a fun afternoon, ate too much cake which is probably why he's only just gone off to sleep - major sugar rush!! Thanks everyone, sleep well x

[Celeste]

I've been reading your blog for a couple of weeks but haven't got around to commenting, I had to today though.
I'm a Support Worker for adults with learning disabilities. My youngest "client" is 59, the eldest is 86, because of their age they have very little family left around them, but myself and every person I work with sees our clients as an extension of our family (we just don't say it that in front of our bosses.)
As uncertain as Toby's future is there will be people like me around to give him the love and guidance we all need, maybe that gives you some comfort for future years.
I love my job because of what Maddy says, I can make my clients happy through such simple means, giving them a hug, sitting and drawing with them, taking them out for a walk. They haven't had the ideal life we all imagine for ourselves but I often look at the 86 year old and hope that when I'm 86 I'm as happy, healthy and free from worry as he is.

[raspberryfairy]

Thank you Julie, I know exactly how you feel, though Edward has Aspergers, and nowhere near as severe as some, but we are coming up to his birthday, and I too wonder about the future, and how he will cope, if he will find someone to love and in turn return his love. Recently I have had a few people ask if I will have anymore children, and I always say no, because of Edward really. I couldn't cope with more ASD in the house (Daddy is mild ASD as well), and I don't think Edward could either.
Toby is beautiful, and you should be very proud of him, and your whole family :) And you should be very proud of yourself :)
Big hugs to you all :)

[lyn]

I don't know what to say, apart from thae fact that I'm sending you a big internet hug. Is there anybody there looking after YOU ? I hope so, you deserve it.
Kiss kiss, hug hug.
lyn

[kirsty]

Hi Julie
This is my first visit to your blog. I'm glad you didn't hit the delete key - this is a terrific post! Our eldest son had Down Syndrome (he passed on three years ago aged sixteen from severe heart defects) and I can relate to so much of what you wrote. You are very right about the need to let yourself have BLAH days sometimes.
I'll be back...
ps LOVE your gorgeous knitting! You may even inspire me to improve my skills!

[katie]

sending you a huge hug for your courage, and love for that little treasure Toby. I have just found your site and am in awe of the beautiful little rabbits - what amazingly neat work! I am going to make a cup of tea and enjoy your archives!
love to you

[Debi]

You have the strength to do what needs to be done. Toby is a beautiful boy and he will blossom in his time. You might want to read Greta's blog. She has two grown autistic children. She might have some useful advice.

http://gretaknits.typepad.com/lifelong_knitter/

bless you and your family
Debi

[VictoriaE]

Hi. I stumbled on your blog from somewhere, firstly I'm a huge knitted toy fan so will be a regular reader to admire your creations. Also while I have absolutely no idea how your feel in the hard times (or is that every day) with your son, I do know what it's like to have a family life that's not "normal". Our 5 year old foster daughter fits into the attatchment disorder category, our 7 year old foster daughter has disturbing dissociative tendancies, so the boundaries, schedules, activities etc we maintain to keep everyone happy are definately not normal! People around us, especially friends, who don't know what we're dealing with think we are way too strict! And the heartache I feel for these girls for their problems would be nowhere near what you feel. I can't realy write about my girls on my blog, or put photos of them on there, but I really apprieciate your stuff. Anyway I'll be back to your blog not only for the knitted toys (adoring), but also for the perspective on dealing with these emotions, you are sort of supporting other people like me. Thanks heaps.

[paula luckhurst]

He is such a dear. Just looking to him make me feel I want have him in my arms and hold him strongly. Congratulations on this wonderful boy.

[Mighty Sally]

Thank you so much for sharing your genuine feelings. My sister-in-law works with autistic children and even though these children are not her own flesh and blood, I think she shares many of your sentiments and frustrations. But I do hear many hopeful stories from her about children breaking out of autism and completely losing their diagnosis when they reach adolescence. I do hope for your son to reach this stage - he is such a beautiful child! I cannot imagine the extent of your emotions, but it is wonderful that you can open a small window with your blog and air out some of the sadness. We are happy to listen and give you support. Hang in there! Oh, and keep knitting - your bunnies ROCK!

[dani (pyglet)]

Those photos are so full of joy, smiles and laughter. He looks a gorgeous boy (you must be a very special mum!)...and you gotta love that trampoline static!! :)
Happy birthday Toby!

[Pat Turner]

Lovely to hear and see how things are going with you Julie. The knitting must give you such satisfaction and relaxation. The smiley faces of the children are a tribute to your wonderful Motherhood skill.

Lots of love from all in Suffolk

Pat T XX

[Pat Turner]

Dear Julie

Hope this finds you and family well, not washed away with all the wet weather over the weekend. We are really looking forward to having Mum and Dad down with us for a few days next week, and plan to take then on a hedgerow survey with us. I feel sure that they are have much more knowledge than Peter of I, hopefully it will be a bit of fun for us all, I am hoping Julia and David may join us as well.

I do think of you often although I don't contact you very much.

Lots of love

Pat T XX

[mia]

Hi again.. just strolling thru your archives.

What a beautiful post that was today.. and it touched my heart. You're absolutely right about making choices for the day, and sometimes we have to just give ourselves "permission" to feel how we feel. I'm gonna think about that a lot today.

::hugs::