Letting go.
For a long time, I believed the children needed me, which came with a long list of requirements that gave them the space and time they needed to be their best version of themselves. But, on reflection, it was me who needed them!
When Alfie was younger, my mum often had him while I was at work. If I knew my mother was leaving for the day, for example, to go shopping in another town, I would call in sick because the thought of him being too far away from me was too unbearable to me. I do not remember doing that with Harvey. Everything was always so organic with him, although life seemed to stand still when he was younger.
I suspect that Alfie being poorly contributed to my worries and fears. Now that I think about it, I realise I was projecting those childhood fears onto Alfie. Alfie struggles with leaving the house; he withdraws from society but loves being home, so we do not push him too hard to go out. A few weeks ago, I asked him if he wanted to stay home to be with me; he said yes. Alfie has been through some traumatic hospitalisations, which have left their mark on him and me.
Over the jubilee weekend, Teddie, Gareth and I joined our friends and their children for a music night in our village park. Teddie and many other children played at the skate park while the adults danced and talked. Teddie was playing happily; however, I could not see him because there was a fire engine in the way (that was supposed to be there). So I walked over and told Teddie not to go off, even if the other kids did, and to stay in the skate park or return to where we were sitting. I realised immediately that I had scared him, which meant he did not want to be left without Gareth or me. I was annoyed with myself because I tried so hard to relax and give Teddie the space to thrive with the other children, but I worried him.
Over the years, I have found it harder and harder to let go. A new milestone was getting used to the idea that Harvey was old enough to go drinking whenever he pleased. The first few times, I sat up like a nervous wreck and kept texting him like a crazy person. Now I still worry, but when Gareth and I go to bed, we barely hear him come home.
With Teddie, I wonder if part of my worry and fear of letting go is because he has autism? For a long time, I felt he was vulnerable, If Teddie was still non-verbal, I would constantly be worrying, but he can confidently tell someone his name address and our full names so I feel it has less to do with his autism. Teddie is extremely emotional, which can be both positive and a negitive. Emotions are an essential form of communication, but one must recognise the cause of these emotions. We strongly encourage Teddie to express himself through emotions and words. This way we can work together to find out what is troubling him. Wherever possible, we want to reduce dysregulation, but this is not always possible and not always ideal.
Repetition is common in autism, in Teddie’s case he is not governed by a strict agenda like in earlier years, but I have noticed how easy it is to create familiarity without being aware of what you are doing. For example, I am always at the school five to ten minutes before Ted’s comes out. I always stand in the same spot in the playground, so he knows where I am, and I always collect his scooter for him. With this in mind, I wonder if I have caused the unnecessary anxiety by keeping things familiar to Teddie. On reflection, I come to school early so Teddie sees I am there, and if there’s any issues I am on hand to observe and help, but do I have to? I panic at the idea of Teddie panicking, which in turn means I project my worries and concerns onto him. This afternoon I deliberately moved to a different spot in the playground and did not get the scooter out of the bike shed, Teddie skipped out of school without questioning my new location.
If like me, you suspect you may be projecting your own worries and fears onto your child, take a step back and honestly evaluate what is happening as in the long run it will only cause further anxieties for you and your children.
The boy who couldn’t speak..
When the health visitor came for Teddies’ 2-year check I knew she was a jobsworth the second she got out of her car. I knew she would have an opinion on Teddies’ speech but at the same time, I wasn’t surprised. We had received a generic questionnaire full of stupid questions that made you doubt your abilities as a parent but you fill it in nevertheless and wait for the list of things your child should be doing.
I cannot remember when I first thought this could be something more than just a speech delay. Gareth & my dad used to always say;
“once he can talk he’ll be fine”
they weren’t completely wrong but they missed out some extremely hard work in between. There is a misconception around speech & communication, one that many people have no idea about even professionals. When a person has no voice they can still communicate, however, they use other forms of communication such as body language, facial expression and behaviours. Using a psychodynamic approach to Teddie we were able to associate Teddies’ nonverbal communications to his wants and needs from an early age by closely observing his behaviours and body languages especially when he was upset and anxious. Not having a voice allows you to see past what someone is saying and see within a person, we all know how to put on a brave face, we say one thing but we mean another. For us, we saw past Teddies’ inabilities to speak which meant I could work on securing an environment where Teddie felt safe to express himself in a way we could understand and not judge him.
Even now when Teddie can talk and hold a conversation with you I see things no one else does. I see him wiping his nose constantly, I see his face change when he says certain words or when I hear his footsteps change or become louder than normal. All of these things are his way of telling me (us) something is wrong, he doesn’t have to tell us with speech he’s telling us through nonverbal communication. When this happens we have to backtrack and find the root cause for his anxieties, cos there’s always a reason why, even if he doesn’t know. It’s possible that something happened at school that unsettled him or I forgot to put his fruit in his bag, it can be something so simple to you and I but is quantified for him. Anyone of these things is enough to change his perspective of life at that time but it’s down to us to help him work through his anxieties before they manifest into something more serious.
I talk about visuals far too much, I know but I cannot stress enough the importance of them even to neurotypical children. Visuals do not just have to be still images, visuals can be picture sentence or videos. Children learn from their peers, they mirror behaviours (good and bad) and follow what other children are doing. When Teddie was 2 & half I showed him a cartoon video of how to use the potty, within 24 hours he was dry night and day. Teddie learns by example so using visuals was a great way for him to meet his developmental milestones in a way that he could understand.
Of late I am aware that all my post are always happy positive posts but that’s only because all our hard work has finally paid & we don’t need to think about what we are doing, we can just do it. This, of course, wasn’t always the case, we avoided so much when Teddie was younger because we knew Teddie wouldn’t be able to handle most situations which was annoying at times but it was what we had to do. Year’s ago we couldn’t individually leave the house, we all had to go out at the same time as it would cause Teddie to become extremely stressed & overwhelmed. We couldn’t spring something on him like we do now without him panicking although this only applies to our home life, at school Teddie needs the visuals and the consistency of routine
Fast forward to now, Teddie is a force to be reckoned with, he is my hero for sure. How is it possible to start school not being able to say a word to now receiving a wonderful parents evening saying how advance he is in certain areas? I knew Teddie would be ok but I couldn’t have hope for a more confident boy, his want to learn and soak up everything society has to offer is mind-blowing which is something you don’t generally see with ASD children. He is participating in class and wants to do what everyone else is doing, he is a superstar.
I will always be my children’s voice whether they have one or not, I will always guide them into the individuals they want to become and not what society expects them to be. Even as an adult I’m still not entirely what is expected of us, what is being ”normal? If being different is being kind, caring, funny & confident then sign me the hell up!
Never doubt your child’s abilities even when professionals tell you otherwise, focus on what’s best for them and not what fits everyone else’s expectations.
Bear, we love you and wouldn’t have you any other way, you have made us all better people for all the reasons above 🥰
Lets talk food…
The boy is eating pasta people!! Yep, you heard me right PASTA. In fact, Teddie has been asking for it almost every night. Last week we had all-day breakfast for dinner, sausage, hash browns, toast, and penne, he can not get enough of it. We are not complaining, of course, because it’s taken us years to get to this point.
I’d like to say that we all sit at the kitchen table and eat the same food, but we don’t. Is it annoying? Yes, of course, it is, but ask yourself if you would eat something you do not like. I’d love not to make a million different dinners each night and have the mindset that my children will eat what they are given but the fact is they won’t! I think there’s a real misconception about the ‘perfect family. Modern technologies like social media allow us to see each other’s family dynamics, to know what’s for dinner next door or how far Joe Blogs has run this weekend. What they don’t show you is them eating a frozen pizza from Tesco on their lap in front of the TV or the kids eating a bag of sweets for breakfast. My point is we do all things like this, not everyone is lucky enough to sit at a table and eat together. Some families choose to feed the children first and then cook for themselves and their partners later – there is no right or wrong here, do what works for you.
As a child growing up in the 80s, we ate what was put in front of us, whether we liked it or not, or we went hungry, but times were very different then. My sisters and I were lucky that our parents always prepared big, healthy meals, especially in autumn and winter, but in summer we subsisted on Twizzlers, Chicken Drummers and Chicken Kievs, mainly because they were cheap and easy to make. In the 80s, money was the main problem for many households, so wasting food was not an option, but I know my parents never prepared anything for us if we did not like it. Money is still an issue in many households, especially recently. We save money by cooking what we all individually like.
I do not believe for a second that all the ‘perfect parents’ out there claim their children will eat anything put in front of them. As children grow up, their taste buds are constantly changing. I have a 17-year-old, a 13-year-old and a 7-year-old son and I can tell you that as the boys grew up, the foods they ate as babies change and they started to decide for themselves what they like and do not like.
Gareth and I have always encouraged the boys to think for themselves and make their voices heard. Even as young children we treated them with the same value as we treat each other, so why should food be any different.
For us, mealtimes are particularly complex as we have two children with sensory issues. Alfie has been extremely sensitive to certain foods for 2 years. He has problems with the consistency of pasta, Lasagne is always off the menu for him as the lasagne sheets are too much for him. Teddie would not eat lasagne as he can not tolerate any of the ingredients in it, I do not eat mince so I would not eat it either. Both Gareth and Harvey love lasagne so I like to make them one as they are the main eaters in our house. We very rarely all eat the same dish. To accommodate everyone’s likes and dislikes, I prepare a million different dishes to suit everyone’s changing taste buds.
As a baby and toddler, Teddie ate everything that was put in front of him. It was not until he was about 3 years old that his sensory issues started. Teddie is an extremely good eater, but he only eats the foods he likes;
Sausages
Breaded chicken
Breaded Turkey
Sweet and sour chicken balls (minus the sauce)
Square potatoes
Chips
Wedges
waffles (sweet & savoury)
Hash browns
Bread (by the loaf)
Toast
Pancakes
Fish
Burgers
Pasta
Fruit has never been an issue for Teddie whereas vegetables are another story but we still put a tiny portion on his plate with the hope he will eat it.
Many years ago I read an article about picky eaters. An American doctor pointed out the importance of putting a tiny amount of food on the child’s plate, even if you know they will not eat it because they might try it one day and find they like it. We have been doing this for a while now and it’s finally paid off. Teddie is much more open to trying new foods and the school meals have certainly helped with that
Teddie has a packed lunch majority of the week, although the school menu contains lots of foods he eats there are normally lots of sauces or gravy involved so he’s better just having lunch from home. Is his packed lunch the healthiest? Probably not, but I know he’ll eat everything in it, we wouldn’t want our boy going hungry.
Try to take the pressure of mealtimes by giving your loved ones the foods they like and not the foods you force upon them as their anxieties around foods will only grow stronger. Instead, sit together as a family and enjoy one another even if that means you all eating something different while watching the T.V.
We love our Bear and wouldn’t have him any other way.
The role of a parent….
I cannot remember the last time I wrote a blog, wasn’t even sure I could still login.
The role of a parent is a hard role to bare at times even without additional needs thrown into the mix. For us to live a semi ”normal” life it revolves around routine and preparation. The second I get it wrong the glue that holds everything together unfolds and the shit really hits the fan.
The need to please is as ever overwhelming, I don’t think I have it in me to say no! Last week I didn’t achieved much other than taxiing children to and from schools, cutting the grass and doing the odd bit of housework. Autopilot is most certainly on but for now, it’s what has to happen.
Teddie is as ever his happy self, I cannot recall the last time Teddie became overwhelmed (a meltdown, I don’t like to use the word meltdown) He, of course, gets extremely close to it but for now, we can stop it from escalating. We never use the fact Teddie has autism as an excuse for bad behaviour, we are EXTREMELY LUCKY that Teddie is very rarely naughty. He is aware of what’s right and wrong but his approach can come across as rude at times. We always pull him up on this and tell him the correct way to speak to someone, he always takes on board what we tell him 
Teddie has an amazing ability to self-regulate, over the years he has created his own movement breaks when he’s at home. For example, we’ll be eating dinner when he’ll ask to go outside, he’ll run to the back of the garden then come back to the dinner table. If he’s in the lounge on the laptop he’ll skip into the kitchen then go back to what he was doing. This has helped us over the years with his movement breaks for schools. When you ask him what’s the best part of the school he’ll say his movement breaks 
Having two other (semi) neurotypical children it can be hard to find a balance, Harvey and Alfie will tell you Teddie rules the roost. This isn’t the case, we do not give in to Teddie at all, what we do do is a compromise. I think most people do this with younger children, I don’t necessarily think we do it because he has autism, we do it because the youngest. I often say I’ll have 3 of Teddie and I mean it, during the lockdown he was the one we didn’t have to worry about, he never moaned at all, not like the older 2 
Life continues to test us, we learn from our mistakes and move forward knowing ourselves slightly better.
We love our Bear and wouldn’t have him any other way
It’s ok not to be ok!
It’s been forever since I have posted anything so with that in mind I thought I’d share some of my daily logs. I’ve been doing this for a while now it’s normally for a post but never get around to posting it or just to get something off my chest, however, these are my thoughts and feelings at the time. With it being mental health day last week, I thought this is a good time to share some of my logs, there’s no date to them as I generally write on one page of my notes on my phone, either the top end or the bottom. I haven’t edited them so some may not make sense to you but certainly do to me!
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I very often feel lost, surrounded by people but feel alone if that makes sense. I constantly have the burden of everyone on my shoulder especially Teddie’s well-being and Alfie’s mental health, something that at times scares me what direction it may lead him in the future. This burden is physically, mentally and emotionally exhausting, some days I feel like I have been to the gym as my body hurts so much I can barely function, however, I have to. I can never switch off, I am constantly thinking ahead, hours, days and weeks ahead just so everything is in place for every eventuality. I’ve recently described my brain as a filing cabinet with a million sections in and that’s just for Teddie.
As said by Ronan Keating; ‘life is a roller coaster Just gotta ride it!
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Nothing like walking back from the school run crying made worse that I didn’t have sunglasses wear to hide the fact. Teddie has had a particularly hard morning and it’s only 8.50! A mix up with 1:1, but what made me upset was Teddie’s reaction to the school head. He was very overwhelmed so he shut himself in the class toilet, which is fine as it’s his way of coping with things. when the head came in to see if he was ok Teddies persona completely changed and it looked like he was scared of her. Teddie then took himself to his desk while protesting he didn’t want anyone with him. I’m not sure if what happened was a good thing or a bad thing, I’d never seen him like this before. I think he knew she was of an authority figure and knew what she said goes but his reaction threw me.
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I’ve called the school he’s ok!
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What makes a person bad (rhetorical, I know the science behind it) what annoys me more than anything is a person who never congratulations another person, by that I don’t mean getting married or having a baby, I mean on a day to day stuff. I always say well done, text or call to follow up on how someone’s day has gone or if the person child has had a good day, however, we never seem to get it back. It’s something that weighs heavy on my heart and upset me! Gareth always tells me to do the same but I just can’t be that person, I like to wish people the best, text them to see how they are and generally interested in them. Rant over!
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Had a meeting with the school Senco today for Alfie, he’s really struggling at school, finding his way around and all the changes that come with secondary school. Alfie is so frightened of getting into trouble, altho that would never happen. He’s worried about being asked a question in class and he won’t know the answer especially now he’s been moved into the top sets. He isn’t eaten or going to the toilet the whole time he’s at school which is another concern. During the meeting, Alfie came in but ended up getting extremely upset. I didn’t want him in the meeting if I’m honest as I don’t like talking about him in front of him. Alfie’s now been given a pass for pretty much everything, he can leave early for lunch to avoid the queues, leave the class whenever he needs to go to the toilet (without asking) and a teacher will not put him on the spot with questions. When all this was being put into place I thought it was completely unless as he’d never leave the class for a toilet or early for lunch but fantastic its there if he wants too.
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Seriously, kill me now! I cannot cope with hearing about everyone’s uni experience anymore, although on the other hand, I am impressed with the level of 18-20 year old who have travelled from abroad- at the same time I’ve over hearing about it. In a recent seminar, one of the girls was asked her fears for this year, her response was:
‘Timekeeping and procrastination”
I honestly wanted to scream; What the FUCK!!! Who says procrastination! She’s a sweet girl though
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Sonnie has real issues!! To add to my forever growing list of things to do and remember Sonnie has decided he cannot eat from his bowel. He now wants to be hand feed, WTF!!!!! Of course, I do it, he’s certainly his mother’s boy that’s for sure, I swear he’s like the 4th child! He’s completely obsessive, always on edge and needs to be hand feed- I think the dogs on the spectrum!
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I’m not sure where I begin with my manic day, all I can say is it feels hell at times. I’m up at 6.20 altho Teddie is up at 6 am, he’s said his good mornings then we send him back into his room for 20 minutes but i should have just got up all I can hear is him moaning.
I do lunches for everyone, I could do them the night before, however, everyone prefers them made fresh on the day! Toast for Teddie and a round of hazelnut pancakes. 8 am walk the dog for a half-hour, come home to take Teddie to a school than race back to get Harvey up, make him breakfast (sausage bap) then head to uni for 5 hours of lectures & seminars.
Get home to start dinner, force the boys to do their homework then to be called and asked if I’d do a segment for BBC London, as I’m listening I’m telling myself to say no, but of course I don’t! End up doing Alfie’s homework as he doesn’t know what to do but have a feeling he does but knows I’ll do it, then I cruel into bed at a ridiculous time, I seriously need to start saying No!
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Harvey pretty much put every item of clothing I’ve recently washed and folded in the wash, by that I mean on the bathroom floor, all needs washing apparently!! I may kill him.
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Today is mental health day and I feel terrible I haven’t posted anything on it! My back is playing me up again (dehydration of the discs, apparently) I feel awful we have had to let our friend down and not attend her wedding down south- right down south in Devon, however, I can’t cope in the car for half-hour let alone 5 hours with my back.
Although my back is sore my arms and legs have taken the strain at times I’m in agony and need to keep moving. I’m irritable, moody and have a million things I want to do but can’t. I want my mirror put up in the hallway but need to repaint it. I want the massive box with the hot tub parts moved from the hallway as It’s been sitting there for over a week and no one has moved to into the garage I’m tempted to don’t myself even though I know it will only make my back worse but needs must!
The only silver lining is my parent are having Teddie and Alfie till Sunday although Harvey has now asked for his mates to all come over so not quite the lone time Gareth and I were hoping for!
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Today is a struggle, it’s only 11 am, one bonus is the hot tub box is now in the garage. The hot water bottle is still attached to my back, it does help but you would think it may give the boys an indication that I’m still hurting! A round of pancakes made for Lord Harvey, then Alfie and Teddie got Amongst it!
It’s dawned on me more than once but being a parent to children makes no difference when you are hurting or ill but throw in a child with autism you have no hope in hell resting or taking time for yourself.
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Taking on other peoples anxieties, worries and fears are completely consuming and draining. I’m in a constant whirlwind of worry myself because I’m constantly worried about the boys. Gareth would say I give in, however, I chose my battles and know-how to win a battle without Teddie even realising I’ve won.
For us, it comes down to patients, something I have a lot of when it’s comes to Teddie. I constantly think ahead and know how things r gonna play out but Gareth hasn’t quite mastered this yet. For me, from the hours of 7 am to 7.30 pm I am constantly playing out scenarios of what might happen in my head which is mentally exhausting let me tell you. I also know between these hours I need to be ready at the waiting for Teddie to need me for something whether it be to read a book, play a game or to just sit with him. Weekends we tell Teddie he has to stay in his room and play till 8 am, Friday night I forgot to remind him which means it’s business as normal and we r up at 7 am.
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My point with my daily logs are to get things off my chest, I very rarely talk about my worries, however, its important to express how you feel with either talking to people or writing down your worries and fears. There are many agencies you can get in contact with if you are unable to speak to friends or family members.
Mental health helplines:
Anxiety UK
Charity providing support if you have been diagnosed with an anxiety condition.
Phone: 03444 775 774 (Monday to Friday, 9.30am to 5.30pm)
Website: www.anxietyuk.org.uk
CALM
CALM is the Campaign Against Living Miserably, for men aged 15 to 35.
Phone: 0800 58 58 58 (daily, 5pm to midnight)
Website: www.thecalmzone.net
A suicide prevention text message service to encourage more men to “open up” has been started by a charity on World Mental Health Day. Text TeamKPG to 85258 and get help.
Mental Health Foundation
Provides information and support for anyone with mental health problems or learning disabilities.
Website: www.mentalhealth.org.uk
Mind
Promotes the views and needs of people with mental health problems.
Phone: 0300 123 3393 (Monday to Friday, 9am to 6pm)
Website: www.mind.org.uk
Loosen the reins…..
Teddie is off on a school trip today……..without me!
As much as I wanted to go with him today I have tried to take a step back and start to let him experience things without me even though my anxieties are getting the better of me at times. Teddie was under the impression I was going on the trip today, every time he mentioned me going I just tried to divert the conversation onto everything but me going. This morning Teddie burst into our bedroom and said;
“25th April, its the school trip today, Mummy you can do your work after lunch and come with Teddie on the school trip, deal? (puts out his hand for a handshake) A deal means yes”
Gareth and I burst out laughing as he was a very matter-of-a-fact about what was going to happen, I replied with; “Pancakes for breakfast?
Teddie was slightly upset as we walked to school, he thought he was getting the school bus from the village bus stop- always a logical a thinker this boy, once we got into class he was fine. I dent down to his level and told him to have an amazing day and to stay with Mrs Henderson at all times, Teddie had the most beautiful response, he put both hands on either side of my face and said;
“You have a lovely day mum, you need to look after the dogs and Doddie (Harvey, who’s at school lol) and do your jobs” Holding back the tears I kissed him goodbye. It’s hard to let go of the reins but I know he’ll be ok and if he isn’t it’s a learning curve for everyone.
During the Easter half term, Alfie and Teddie stayed at my sister’s for a sleepover, I wasn’t keen on Teddie going, however, he was sooooooo excited about it;
“On the 17th April sleepover at Aunty Em’s house”
Teddie was counting down till the sleepover so I couldn’t crush his little heart and tell him he’s not going. I had no issues with him being with my sister, my issue was their dynamics are completely different from our’s even though my family know our routine and how we do things they only know how we do it at our house. We live our life without even thinking about it whereas others do not see things as we do, for an example, my sister said she was planning on having a garden day with the boys, they can all play while she cuts the grass. What she had forgotten was, Teddie, cannot cope with the noise of a lawnmower had she put it on he would have made a frantic run for the house and possible not gone outside while he stayed over or ever again as he would have made an association of fear to her garden.
My sister had also mentioned taking the boys to the park the following morning, as she said it I felt physically sick with the idea he was out without me, again it’s not that I don’t trust my sister I’d be the same if Gareth took the boys to the park and he’s their dad! In that second every scenario went through my mind I had visually made a missing person’s poster for ITV news and knew who to call if he goes missing, I’d use my radio connection to get the word out there, I also ponded on what picture to use for the police as we have so many lovely ones of him………..This is all RIDICULOUS I know but it’s a process I need to go through in order to leave the house lol.
With all this worry Teddie had an amazing time at the sleepover and at the park, he didn’t want to come home he had so much fun. For such a long time I have been Teddie’s voice and made decisions for him when he couldn’t but Teddie has really changed these past few months, I cannot explain what’s happening before our eye’s. Teddie’s choice of vocabulary is astonishing at times I wonder where he’s heard the things he says. He is putting everything into context and choosing to use describing words during conversations. Teddie is a logical thinker, he takes after me for this, he also seems to have a reply for everything of late when I tell him to “Shush” his response is; “Do not shush me mummy no one is sleeping” Last week I told him he could wear his superman socks, I said “wow, Teddie, you’re Superman now”, his reply was;
“Get serious mum” Have we got a teenager already??
All we have ever wanted was for Teddie to experience life as Harvey and Alfie have, now Teddie is communicating better I honestly think this will all be possible. Although we are not naive to think that things do not constantly change, what works today is not the same for tomorrow or next week, however, for now we are heading down a path that couldn’t be brighter.
We love our Bear and wouldn’t have him anyone way!
Autism Awareness Month
April is Autism Awareness Month, although we are an advocate for autism every single day there are still many people who do not fully understand what Autism entails or do not want to know. As a family, we threw ourselves into everything that surrounds autism, we changed every aspect of our life in order to make it a better one for Teddie and us all.
Our journey started 3 years ago when Teddie was 2, although he hit his developmental milestones (early in fact) his speech was the one thing that was delayed. As Teddie got older his lack of communication started to hinder him more and more and I was at the end of my tether and could not take any more of him constantly pulling me towards everything he wanted so we decided to seek out professional help in the form of speech and language. 3 years later he has never had active speech and language due to the endless waiting list and lack of resources in our area, everything he has achieved has been on his own merit and the preservation to want more (an obsessive mum helped) Over the years I realised the issues Teddie was facing was more than speech and language, noise was the hardest thing for him to cope with he couldn’t be around anyone who cried, was loud or became over-excited. Noise looked to be like a pain shooting through him, he could not handle it and became very disorientated when subjected to it.
We decided to share our autism journey opening and publicly even before we received a diagnosis as we wanted others to see how we managed our life with a child on the spectrum as well as having two neurotypical children. I’d love to say it’s been easy but it hasn’t been, it has been hard and testing on everyone especially on Gareth and I but Teddie is not to blame for this, it’s children as a whole (If you didn’t already know they are hard work!) Lately, I have really been seeing things through a different perspective- a lot of what Teddie is experiencing has nothing to do with his disability it is “normal” behaviour for a 5-year-old. It is very easy to think everything he does is due to his diagnosis but I am finding he is doing more and more things as his brothers did which has been lovely to see. Teddie still struggles in certain situations more so when he doesn’t know what is happening or there’s a long wait for an activity to start but he is participating more and more in class which is amazing.
Sharing our journey is also awareness for autism in our local community when Teddie started school we asked parents whom we knew to share a post I had written about being kind and teaching your child that all children are different, I was so worried the children in his class would have an opinion on him especially as at the time he was completely nonverbal but they were all amazing and still are.
There many small minded people in this world who choose not to understand the complexity of autism, we have family members who have never asked about Teddie’s autism, never encouraged him or rewarded him for his brilliance. The first thought would be to react with anger and annoyance however, I feel sorry for them and at times think they are jealous of Teddie especially his academic achievements. It’s these people whom I want Teddie to have an understanding of, these people will never give you the accreditation you deserve now or in the future, have them in your life but keep them at a distance.
Life on the spectrum has it’s up’s and downs but we are at a place in our lives when we really don’t have to think about it we just know what to do or how to approach a certain situation without worrying too much about it.
Teddie is a kind-hearted lad with a massive personality who we couldn’t be prouder of if we tried.
We love our Bear and wouldn’t have him any other way.
Building confidence
As a rule, I am a very confident person, I’m not afraid to stand up in front of a crowd or speak my mind on something I have knowledge in but confidence is so much more than that.
For the next 9 weeks I’m attending a building confidence course, at first, I thought this was going to be building up children’s confidence but its actually from a parents perspective, which is great as it’s brought feelings I didn’t even know I felt. Today we were asked to set some individual goals in regards to our own personal confidence, mine are the following:
- Accept help from others- I am a very knowledgeable person with most areas of the spectrum & the psychological effect this has on people. I am very rigid with our routines as I’ve set them & enforced them so I am very reluctant to hand the reins over to someone else as it generally undoes everything I have put into place. I stop doing things as I worry what these effects will have on the children, mainly Teddie.
- Support my son (Alfie) with his confidence & low self-worth: Alfie is the least confident boy I know, he puts himself down pretty much every day. Although we support him at home and he has help at school with his anxieties I feel he could progress so much more if he had the tools to self-regulate his owns feelings & have the confidence to speak his mind.
- Inner confidence: Although my outer exterior tells you I am a confident person my inner exterior is telling me different. I am very obsessive when it comes to my children but not so much about myself, I pretty much put myself down at least a few times a week. I worry what people think.
- Avoid toxic people: There are certain people I need to avoid as they make me feel a certain way about myself. I’d say I am a very good listener, I’ll sit and allow friends/family to tell me their problems, worries or concerns but when it comes to my turn to share my feelings I’m shut down & not listened too.
I’ve always been an advocate for “It’s okay not to be okay” as parents we all feel like we are doing a rubbish job at one point in our lives- your lying if you think this isn’t the case but it comes down to having the confidence to admit this to ourselves and be able to make the changes that are needed for you to feel good about yourself.
I think building confidence isn’t necessarily aimed at parents with children on the spectrum, in fact, you do not even need to be a parent to want to improve your confidence. First impression count & by making small changes this can make you feel so much better in social environments.
The information I gain over these next 9 weeks I would love to share with you all, sometimes the smallest of change can be the breakthrough you needed to become the more confident you.
Merry Christmas
This photo just melts my heart, I know I say it all the time but I couldn’t be prouder of Teddie if I tried. This was Teddie’s first nativity as last year he couldn’t handle it- so much so he still struggles with the school hall even now. Teddie had a slight blip at the beginning of the play as something wasn’t where it normally was but it was sorted in no time.
Seeing Teddie centre stage singing and dancing was like a dream come true for me. My face was hurting so much from smiling, he only did one song but he bloody smashed it!
School plays are always a bit bitter-sweet, as much as we want Teddie to be involved in them at the same time I’m filled with dread he’ll have a meltdown in front of everyone while it’s being recorded for all to purchase. As, much as I really do not care what people think I don’t want to put Teddie through it.
I honestly was dreading the last few weeks of school for Teddie but he handled it so much better than last year. The end of the term can be a struggle for all children let alone Teddie, it’s been a long-term and everyone is exhausted from the constant change to the daily routine.
The boys have all finished school for Christmas, the first day of the school holiday’s has begun and we are staying in PJ’s all day.
Teddie has been on Christmas countdown for weeks, but the last few days he’s been super excited as the days get fewer. We decided against getting chocolate advent calendars this year for the boys instead we opted for a wooden countdown wheel, I think it’s this that has got Teddie so excited. I cannot wait to see his little face Christmas morning.
On Friday we are seeing Teddie’s paediatrician for the last time, we were due to see her 2 months after receiving his diagnosis but in fact its 2 weeks short of a year due to the ridiculously long waiting list. It annoys me slightly that we will be discharged as if we ever need to see a paediatrician we will need to be referred to again. Although we have waited forever for an appointment I cannot wait for the doctor to see how much Teddie has changed since she last saw him, to think a year ago he was non-verbal now we can’t keep him quiet. It’s amazing what difference a year can make.
Every day Teddie faces a new challenge, we don’t always know how to deal with them all but we always get there in the end!
We love our Bear and wouldn’t have him any other way
Making the change
If there’s any advice I would give to parents who are just starting their journey with or towards a diagnosis it would be this:
The diagnosis at this stage isn’t for your child it’s for you as parents, your child is who he/she is and a diagnosis isn’t going to change that or help them in any way (other than school) it’s down to you as parents to make that change.
The dynamics of your lifestyle need to change, not solely around your child but adaptions need to be made so everyone can live in peace.
We certainly found it hard adjusting our family dynamics, with two older boys and jobs we hoped Teddie would just slot into our routine but unfortunately, that wasn’t the case.
We cannot and may never be able to rely on Teddie to make sure he has everything he needs for his day as we would be setting him up for failure, although at 5 this would be an ask regardless of an additional need. As Teddie’s parents, it’s down to us to make sure he has everything he needs accessible for his day out readily and waiting for him so when I say Teddie go get bag and shoes he knows where they will be and he’ll feel he’s accomplished what was asked of him as the slightest thought of failure can result in a meltdown.
Fight, fight, fight for your child, I often say to parents you’d never let a person physically hurt your child, so don’t allow them to mentally hurt them. There is no difference between the two when it comes to neglecting your child due to their disability, the pain and hurt are just the same.
Stand proud and be present, show the person you’re meeting with you know what you’re talking about, they may well be qualified in their field but they are by no means as qualified as you are as you live this job day in and day out!
Even on the hardest of days never let your child see how you are feeling as they will only mirror your behaviour and make the situation worse.
We have all been in the situations when at times the right thing to do would be to shout and tell your child off but you are just pouring more fuel onto the already out of control fire. I’ve perfected the inner scream down to a tea now, there are times when I’ve wanted to shout, scream and cry but as always I need to have a “happy face” as it’s my smile that clears the cloud over Teddie when he’s in crisis.
Talk about how you are feeling, everything you are feeling is completely normal and trust me we have all thought it! If you can try to attend parent workshops do, there honestly not there to tell you how to be a parent in-fact you can gain some insights on how other parents manage their routines and feel supported at the same time.
Love and support your child every day, always be their voice and never apologise for who they are.
Life with a Bear 