Tuesday, August 25, 2009
I'm currently blogsitting for the lovely Hammie on her work blog and it got me thinking to friendships that have evolved since Munchkin got diagnosed... Like so many mothers of children with special or extra needs, it's not until the chips are down that you find out how strong your friendships are as you become almost consumed by all the therapies, appointments and all the extra needs that your child has on a day to day basis. Autism has an almost instantaneous grip of your life, spreading and seeping into every aspect of what you do. It controls where you go, when you shop, what your child wears and so on and on... Needless to say, you become almost obsessed with finding out everything you can about ASD, and its a huge spectrum so this takes up a large amount of any time you may have. Whilst your friends you have may have even grown up with, can show some empathy and sympathise that you cant "take Johnny to the playground because its next to a main road and there are two exits", very soon they may tire of hearing about the extra needs your child has. This is why it is so important to have a support group or network of friends to talk to when things are getting you down, or if you're having a hard day as they "get it" without even having to explain. All you have to say is "shes nudie again" and they'll understand that you may have had to put your little ones clothes on ten times already that day! You don't have to explain why you need to put clothes on back to front or sew the zip up on all-in-one pyjamas... they just get it!
One of the first places that people look for information on their childs diagnosis is the internet. While you can get very useful information via the web, you also have to be so careful what you read as not everything that is printed or put up on the net is scientifically tested or tried. Whilst trawling through web pages myself, I joined a parenting website Rollercoaster and found a huge amount of support from the girls on the Special Needs forums. After posting there for a number of months I started to get to "know" some of the girls. One mother posted me on some Hanen books and we got chatting. We both signed up to Facebook so that we could see pictures of each others families and found more of the Rollercoaster girls on there too. Hammie had set up a Facebook page for Irish Autism Action and we found her and when she added us she introduced us to huge amount of autie moms and that's where I found my real support network! I'm not saying that family and friends can not be supportive but there is something amazing about having the support of friends who may not walk in exactly the same shoes as you, but wear a similar size and type!
I've been using Facebook for over a year now and the majority of my "friends" are parents of kids on the spectrum and we fondly refer to each other as our "Autie family." Any new parent who joins us might not understand immediately where the "support" is in our group, as it looks like a bunch of people doing quizzes, or playing Farmtown or sending each other gifts or hearts... But look a little closer and you will see someone post a status saying they're having a tough day... very soon there is a handful of parents online, asking how they are, sending them support and generally just letting them know they aren't alone (which is so important in my books). You don't HAVE to do these applications and no one thinks any less of you if you don't. Status updates are often questions looking for advice or just statements of how you are feeling. Lots of parents use them to celebrate the big and the little achievements our children make :) There is also the private mail facility where you can ask selected friends advice if you have a sensitive subject you wish to discuss, and don't necessarily wish to post to your profile. It really is a wonderful resource at your fingertips, especially if like myself you cannot get out to support group meetings very often. Regardless of what time I have ever come online, if I can't sleep or for any other reason, there has always been someone else online at the same time as we have members of our Facebook group in all continents :)
"From little acorns great oaks grow..."
Posted by Petunia at 3:00 PM
Wednesday, August 19, 2009
Jazzygal did a great post on her blog recently on obsessions and using them to harness your childs skills such as hand eye coordination, fine motor skills, communication and problem solving, and as I read it I couldn't help but think about Munchkins obsession with Peppa Pig and other television programs. I don't know what exactly it is about that precocious little piggy that seems to catch her attention more than any other character has but I am grateful to the makers of the series as they have provided me with one of the most valuable tools I can use with Munchkin... Social Stories.
You may laugh at the thought of Peppa Pig as a tool for autism but I firmly believe that she has smoothed the path of visits to the doctor, dentist etc admirably. For every situation we have encountered, there seems to be an episode that relates to it. I remember having to bring Munchkin to an eye test and prepared her for weeks beforehand watching the episode where Peppa goes to the optician... We had to wait as they were running late so she started acting up... By the time we got in she was a bit wound up so I reminded her that this was like when Peppa went to the optician.... The Orthopist corrected me haughtily so that was enough for me to crack... I growled at him "Until they make a Peppa Pig episode with an orthopist... you're a damn optician.. RIGHT!" I was a bit stressed....
You don't have to buy expensive tools or kits to make social stories work for you. I have seen excellent social stories with hand drawn matchstick men which can be very effective. The web has lots of free drawings you can download and print off to do your own. One of my best purchases was a Tesco Value Basics laminator and I print off pictures and with my glue stick and laminator have made practically indestructible story books.
I took a series of photos for my niece over the summer when she left her beloved "Ducky" at my house after a visit and posted them onto my facebook page everyday so that she could follow "Duckys Holidays" until we were able to reunite them (posting wasn't an option in case he went awol...) I was surprised how many professionals got into the spirit of things and let me photograph them with the stuffed duck when I explained what I was doing. He visited the dentist, the doctor, the pharmacy and the hospital (xray dept for the Elder Lemons pneumonia which this bad mother was just giving paracetamol and sending him off to school!) These pictures can now be used for future social stories I have to write for Munchkin too...
Posted by Petunia at 2:02 PM
Thursday, August 13, 2009
As a reader of several great blogs, I have noticed a lot of discussion on a certain blog where a mother vents her anger and bitterness regarding her childs ASD diagnosis. The New York Times also published an article called "The Unvarnished Reality of Autism" which was a reaction to a stress study on parent of children of autism. I truly feel for the mother whose reaction to this study was published and am glad that names were withheld for her childs sake. To go through life feeling this bitter and twisted must eat away at her soul everyday! I can't help but worry how her son will feel if he reads his mothers words when he grows up too and realises how much his mother resented her life with him... It made me sit back and question why I am a positive parent and haven't been consumed by the sardonic cloud that seems to envelop others. I think the answer lies in "Perspective Parenting", and the definition of normal.
I have been blessed to work with a lot of fabulous families over the years in my job and meet some of the most amazingly positive people. The children I work with all have varying degrees of disabilities, both physical and intellectual but all severely effected. They are all great kids, with different personalities, likes and dislikes with the one thing in common... their smiles light up the room. When I first started working with them I would have to "look past" the disability where four years down the line, I see the child and not the restrictions their disabilities place on them. I have the utmost respect and admiration for the mother of some of the kids I work with. Where it could be expected of her to feel bitter or depressed, she is without doubt the most positive inspirational person I have ever met. Instead of wallowing in pity, she started a support group for parents of special needs children, councils and helps others, has unending energy and time for her kids, and is always celebrating any small gain they make. My life is a walk in the park in comparison so when I start to complain about Munchkin bolting or running off, I thank my lucky stars that she can without the aid of calipers and frames. When I moan about Munchkin not eating many food types or not wanting to try new foods, I remind myself to be grateful that she can eat, that she doesn't have to be peg fed, that she doesn't aspirate fluid from her foods down into her lungs.... When I get frustrated that Munchkin is still not toilet trained, I think of the health board nappies that she won't have to get as she can be trained, even if it takes a little longer. Perspective... its a great tool to use when it comes to giving us a self administered kick-up-the-bum! I'm not saying as a parent of a child with special needs that you can't attend a "pity party" occasionally, but don't overstay your welcome and become a permanent resident!
Instead of dwelling on what Munchkin can't or won't do, I prefer to celebrate what she can do. She is an amazing, happy fun little girl and her possibilities are endless so long as the people who love her stay positive and never clip her wings with negativity and disappointment. Another mom I talk to asked me recently when I was telling her about certain events in my life "how do you stay normal?" Am I normal? What is normal? I don't know anymore. To me, my life with my three children is "my normal". Hammie from Hammiesblog coined a great phrase recently which I love "Neural otherness is awesome" Says it all really!
Posted by Petunia at 6:19 AM
Sunday, August 9, 2009
Image by Leo Reynolds via FlickrFollowing a lot of discussions with fellow mothers of children with various disabilities, I noted that a lot of parents who already have one child with a diagnosis are often accused of "looking for problems" in their siblings... It is astonishing how many are told that they "want" something to be wrong, or that they are "disappointed" if everything turns out to be alright after worrying about their development. With autism, what most people don't realise is that after one of your kiddies has been diagnosed, your Autie-radar is switched on permanently. We read up on everything we can find to equip ourselves to deal with the diagnosis, and keep informed of current therapies. The life of an autie or aspie mom is a busy one of constant appointments, research and reading in order to help our child as much as possible. If your child had broken its leg, you would do exercises and physical therapy to help heal once the cast is off so that the muscle doesn't waste and your child can be up and running around again. Is what we do any different? No, only we are exercising our childs brain and training ourselves to be the most important therapist your child will ever have. With all this information going in, it's natural we will start to look at any behaviours in another sibling differently... What we may have written off as the terrible twos/tumultuous threes/fearsome fours etc. in our first baby, when we see behaviours in another child, we look at them in more detail to see if there is anything underlying there so we can intervene and help that child too. Does this mean we "want" something wrong with our child?? Hell no!
I had the opposite happen after Munchkin got diagnosed. As I said in a previous post here when my son got diagnosed with ADD it was a bolt out of the blue and something I could never have imagined. Had I been more aware of disability when he was younger, I would have noticed the signs as they were there but I just didn't see them! The tapping, the wandering off, his constant loss of attention, getting distracted in shopping centres by something that has caught his attention and just going to have a look without informing anyone... these are just a few of the things I never noticed at the time. It never occurred to me that there could be a reason for it.
When my teenage daughter came to me and asked to see the doctor, I put it off as long as I could as didn't want people thinking I was "looking" for problems... As her mood swings got worse and her intolerance for certain sounds drove her to eat in different rooms as she couldn't bear the sound of people chewing (even with mouth firmly closed) I knew the time was coming that I'd have to deal with her problems too. She was making lists of characters in TV reality shows she was watching, and HAD to control the television. No one was allowed to use the remote but her and if anyone tried to.... well the outburst was not pleasant. More than one remote got shattered against the sitting room walls... I started to wonder if this was more than attention seeking (my original denial to myself as didn't want to believe that all three of my beautiful children had problems) and looked in more detail. She was depressed beyond belief and when she came to me and said she'd thought of ways to kill herself that sprang me out of my denial and I made the appointment to see the GP the next day. Once again, it was another €55 to be made felt that I was looking for problems (see original post here) My poor Yani walked out of the surgery after being told to "snap out of it" and to "look for something positive when someone annoys you"... BUT, I did get my letter for the Child and Adolescent Psychiatry Services to have her assessed which is what I went there for. I hadn't expected anything remotely like empathy or understanding from the doctor so wasn't disappointed when it wasn't forthcoming (she did up my dosage of antidepressants though as obviously thought I needed that!)
I organised counselling for my little girl and rang the CAPS myself. Once again, they were wonderful and we weren't waiting too long to be seen. Yani was subsequently diagnosed with ADD, clinical depression and traits of OCD and she was put on Prozac... I now had a full house of Alphabet Kids...
People often when they find out about all three having a diagnosis will tell me they're sorry.... I don't feel sorry for myself or my kids, we are who we are and are working towards making life a little less stressful for ourselves through intervention, communication and understanding. Our house is never dull, and we certainly could never be compared to the Brady Bunch. We are close and even though there may be a lot of fighting at times, the teenagers are good kids. A day doesn't pass without hugs and kisses from them :) I love you kids xx
Posted by Petunia at 2:46 PM
Monday, August 3, 2009
The weeks following our visit to the Professor were filled with moments of confused and conflicting emotions as the reality of the diagnosis settled in. I think that it is an important step that needs to be taken before acceptance can finally happen. Some days were spent with moments of great sadness, some anger, a pinch of self pity and finally acceptance. Munchkin was oblivious to my distress and confusion, which when I look back at that time is a blessing as I'm sure she would have found my constant mood changes distressing and bewildering had she understood my feelings...
Slowly, and most certainly not overnight, the moments of positivity started to become greater than the moments of depression and after a very brief pity party, we got up and moved on with what needed to be done. Every day, I would wait anxiously to see if the written diagnosis and report would arrive in the post so that the next steps of applying for things like the Domiciliary Care Allowance and Home Tuition could be taken. It seemed like months we were waiting but in reality it was closer to three weeks... Then the day arrived.
I ripped open the envelope and read the report. Even though I knew what was being written in the letter, it still surprised me how shocking it felt to read it in black and white. I made a cup of tea and let a tear run down my cheek as this was one of the moments that merited allowing a little squeeze of the heart and a little cry. There was more post to be opened. What I opened next would send my mind back into turmoil and confusion...
The AMO who had done the assessment in the July and the MCHAT scoring had sent a report back to the paediatrician I had seen previously. As in my previous post here she had agreed that there was indeed a problem with Munchkin and had urged me to apply for the Assessment of Need. The letter I received from the paediatrician, the same morning I received the written diagnosis, pulled the rug from under my feet. It was a scathing snide letter insinuating that all Munchkins perceived problems were in my head. Statements such as "inconsistent with her mother's concerns that ******* has autism" "she is young" "The Schedule of Growing Skills was very reassuring and maybe the echolalia and her difficulty understanding her own mothers speech may be due to the fluid in her left ear and not due to any difficulties with communication like autism".... once again I was left feeling as if I was being accused of Münchausen syndrome
The old feeling of self doubt started creeping back in and my transition to acceptance had been given a huge setback. It would take a few weeks of self searching and constant questioning to get back to where I had been before reading that letter. When thinking back to it now, I feel immense anger that someone I expected to trust, and indeed the first professional to take me seriously could make me feel this way. It made me realise that we are not "people" to some doctors, merely a name and a hospital number on a chart. Months later, when I saw the AMO for the DCA assessment, my faith in some doctors were restored when she remembered Munchkin from the original assessment and when shown this letter from my file, was extremely irate that we had been treated this way. She promised that it would be raised in a meeting that footnotes of observations must be considered along with the MCHAT and Growing Skills scoring charts. I sincerely hope this is the case now for the sake of children undergoing these assessments now...
Posted by Petunia at 3:23 PM