My son is severely autistic and I wanted to share some of our experiences and things that we’ve found useful.
We were very lucky with our son in that we found out quite early on in his life that he was autistic – he was just 2 when diagnosed. Early diagnosis of autism can make such a difference to families – giving them the option of starting therapies and interventions early on in their child’s life, begin to adapt family life to the challenges and helping them avoid years of anguish and uncertainty. We started straight away with the PECs program and through that were able to give Toby the ability to begin communicating with us and lessen some of his frustrations.
Autism now affects 1 in 150 children and this year more children will be diagnosed with autism than with diabetes, cancer, & AIDS combined.
So what is it?
Autism is a ‘spectrum’ disorder which just means it affects each individual differently. Some children have a mild form and are able to speak, enjoy company and attend a mainstream school with a little extra support. Others are extreme and are withdrawn from the world, unable to speak or communicate with those that love them. Autism is a lifelong condition.
There are 3 key things that are common across the whole spectrum:
difficulty with social communication – some children have no speech at all, some can only echo speech they’ve heard, some understand and use speech well but are extremely literal – ‘I laughed my head off’ would be a confusing comment for them to interpret.
difficulty with social interaction – autistic people can find it very hard to form relationships and may lack awareness of what is viewed as appropriate behaviour – for instance personal space, touching strangers etc
difficulty with social imagination – an inability to understand what another person is thinking or feeling
Other autistic traits include:
Repetitive behaviours
For instance repeatedly watching the same video over and over for years or repeatedly lining up objects. Since the age of 3 my son’s only toy has been duplo lego and he will build a tower of 5 blocks, take it apart again and rebuild – repeating this action without a break for several hours at a time.
Many autistic people are extremely stressed by changes in routine.
Sensory sensitivity
This can affect any of the senses either by intensifying them (hypersensitivity) or by making them under-sensitive (hypo-sensitivity). Loud, sudden or particularly pitched noises can be unbearable. Clothing textures can also be a problem and many autistic children repeatedly strip off. I’ve found removing all clothing labels or wearing T shirts, pants and vests inside out helps Toby keep some of his clothes on.
Many children with autism seek stimulation by rocking, hand flapping, flicking objects etc. Toby gets very excited by fast movement – such as cars along a busy road, rolling credits at the end of a film and will squeal and jump with delight. He also does a lot of head rocking.
An uncommon reaction to pain is also a factor, again either intensified or under-sensitive.
Poor sleep patterns
Difficulty going to sleep, frequent waking etc
Unusual eating behaviour
eating non-foods (shampoo, dirt, toothpaste etc), or only foods of one colour / shape, and extreme food fads are common.
Self injurous behavious
Hand biting and head banging against a wall are probably the most common. These are obviously extremely distressing for a parent to watch. Over the last ten years Toby’s hand have become very calloused and scarred and he is at constant risk of wound infection from his own saliva.
Some links:
As a parent looking for help the internet is a great resource. It does however give access to a huge and bewildering array of information and it is enormously time consuming to plough through it all. There are dietary interventions, behavioural therapies, communication strategies, research programmes and countless other avenues to investigate and interpret. Deciding where to start can be overwhelming.
I thought I’d share a couple of the UK sites that I’ve found useful through the last 5 years – it’s no where near a comprehensive list and since every child with autism is different it’s not going to cover much that everyone may need, but it’s a start and I will try to keep adding to it.
If you have a child with autism I wish you strength and courage – it’s not any easy journey but you are not alone. My best advice is to seek out other parents of autistic children. They will know exactly what you are going through and even if they have no solution just sharing your experiences will help enormously. Sharing your story with others in the same position has really helped for me – it just reminds me I’m not the only one going through this and helps me keep going.
Although Ian Brown’s son Walker is not autistic (he has a very rare condition called cardiofaciocutaneous syndrome (CFC)) there are many parallels between the experiences of his family and any family caring for any disabled child. His book, ‘The Boy In The Moon, A Father’s Search For His Disabled Son’ is an honest and enlightening account of life with his son. There’s a great interview you can listen to Ian Brown in conversation with Richard Fidler.
A few resources in the UK:
The National Autistic Society usually a first point of call with a very comprehensive list of information and links etc. There’s a full overview of information on autism for parents and carers, information on the latest research and a lot, lot more.
PECs (Picture Exchange Communication System) – We introduced this method when Toby was just 2 and it has given him the ability to ‘tell’ us a little of what he wants and needs. I believe it has helped him enormously and relieved a lot of the tantrums and melt downs caused by frustration. There are other ways of introducing communication (Makaton / signing) but this visual method seems particularly useful for children with autism and is universally understandable.
Thames Valley Adventure Play area
It’s hard to take an autistic child out in public and do ‘normal’ kid stuff as often understanding and tolerance are not forthcoming from others. People can be judgemental about the strange behaviours, tantrums and noises that autistic children often display. As a parent you do your best to ignore the stares and comments but they do sap your confidence and strength in taking your child out anywhere. The best thing about dedicated special need play areas is that everyone understands and that you don’t feel different as a family.
A great place for a holiday. The Thomas Centre in Lincolnshire, UK is a new contemporary barn development which provides 4 and 5 star luxury, self-catering holiday accommodation for families with communication impaired children and adults. Facilities include a pool, trampoline, indoor and outdoor play areas and it seems especially good as it’s small scale and everyone staying there is dealing with similar issues.
LDA Learning has lots of games and visual aids for kids with autism.
little cotton rabbits 
Thanks for this page Julie! I recognize a lot as you well know;-) My son likes to eat everything apart. First meat, then potatoes, and finally vegetables;-) It took us a very long time to learn him eat hot meals.
LikeLike
Thank you so much for making this page. I want to be a nurse, and I like learning about things other people go through so that I can be more understanding when I encounter them. Have a great day!
LikeLike
i work in a aba school for children with serve spectrum disorders most of whom are non-verbal and the pecs books are our main form of communication with the kids. the school uses other devices but the first go to is the pec book and i love them. the kids i work with are incredible at using them, they really do make a difference
LikeLike
I think you have summed it up better than any other website I have seen.
I have 4 children and 2 of them are on the autistic spectrum. One has ‘classic’ autism and the other has aspergers. They are both pretty mild in comparison to some cases and they both have speech. I sometimes wish they would be a bit less vocal lol. My youngest screams at high pitch yet has hearing sensitivity. An ambulance set it’s siren off just as it was going past us the other day and freaking out doesn’t even begin to describe it.
When my 10 year old was diagnosed he was 9 and the support was pretty much rubbish for his age group. Infact it was nonexistent. In complete comparison my 5 year old was diagnosed a couple of weeks ago with aspergers and we were immediately given details of all sorts of support groups because he is younger.
There are a number of groups on Facebook saying they have a cure. Well what a load of rubbish. There is no cure and the only way things can get better are if you learn how to deal with situations as they arise. They will have it lifelong but they and us can learn to deal with things in different ways to overcome difficulties.
It is nice to know we are not alone although sometimes it feels like it.
LikeLike
Hi, Julie..I would like to refer you to http://www.utexas.edu. Just click on the banner at the top to read about this research. Greg happens to be a friend of my son, but I had no idea that he was “somebody” or what he was doing! This is fascinating work. I think of you all often..and Rose Bunny says, “Hello”!
LikeLike
My son is autistic and it’s both heartbreaking and heartening to read about others in this situation – especially when you describe something I can recognize all too well. Thank you for putting this all together…
LikeLike
You summed up ASD perfectly! My 3 year old has ASD and we are lucky that he is mild, but saying that everyday is a challenge, I often wonder wether we wil find our way out of the trees, let alone the the woods!
Love you bunnies, I am an avid quilter but your beautifull bunnies have made me think about having a go at knitting. Keep up your gorgeous blog.
LikeLike
Hi Julie and everyone one else in the uk with special needs children I can recommend the internet support group http://www.specialkidsintheuk.org/
Hope it is of use to you all.
LikeLike
What a great page you’ve put together on Autism. It is part of our life too, and the road is not always smooth. Good luck with your continuing journey
LikeLike
Hi Julie,
How can I purchase one of your Bunny Girls?
Thanks Donna
LikeLike
Hi Julie
If the 6 weeks holidays get too stressful for you and Toby, do consider respite. My eldest girl is at the very severe end of the autism spectrum and we began to put her into respite at about age 6 or 7 as we realized we were in for a very long haul. With Toby in respite you and Amy can go and do things together at places you find impossible to take Toby. Our local government provides overnight respite and a weekend break or a week as she got older was a godsend for us as a family, I doubt if we would have coped with her without it. She is now 20 and in a group home and I have forgotten how stressful life can be with a mentally disabled autistic child.
Karnak a fellow traveler
LikeLike
Hello Julie,
I’m not sure if you’ve ever heard of the RDI (Relationship Development Intervention) program before or not, but we’ve been using it with our autistic son in Canada with amazing results. The program was created by Dr. Stephen Gutstein and is based on the natural development process. As such, it’s incredibly effective for treating ASD and PDD.
https://www.rdiconnect.com/
Good luck to you and yours!
LikeLike
I am a lucky ducky mummy of two beautiful ‘auties’. My girl is 9 and is scrumptuous, naive, extremely vulnerable, and is able to attend a mainstream private Christian school, fulltime. My boy is 6, very cute, talkative and extremely intelligent but cannot attend mainstream school despite having attempted 2 in less than 18 months. He was in public school because the private one opted not to take him on (they are allowed to do that, but a public school also refused him and they are not allowed to do that). I am now homeschooling him and he is much happier, less challenging and learning to his ability at his pace. I have never wanted my children to be anything other than what they are, despite the utter exhaustion I have experienced in trying to apply for services and funding to better meet their needs, and trying to get teachers etc to see the world through the eyes of autism. These 2 beautifuls have a valid place in the world merely because they are what they are; different. Yes, they are high functioning, but they lack independent living skills, cannot adapt well to other situations or people, and are sensory challenged on a daily basis. My son is constantly misread because of his high IQ, yet he scores as more severe on an autism rating scale than his sister who has more obvious deficits. I think that he scores differently because he talks well (but is extremely pragmatic) and we have greater insight into his world than his sister’s who has a severe language disorder (but talks). Both know that they have autism, and this makes them both glad and sad. Each have friends who are in the spectrum, and it is wonderful to see how easily they get along with children who are painted with the same angel dust. Neuro-typical children often make derogatory comments (‘retard’ being the most popular one attributed to my boy) and this makes them sad and feel powerless. Shopkeepers give us grief too, particularly old ladies in thrift shops and those waiting in line at the supermarket. I am tired but feel complete joy in my motherhood. I have never felt ‘cursed’ but often challlenged! My children tell me every day that they love me because they feel the love and joy I have inside me.
LikeLike
Dear Julie, and any other mums out there that can offer advice,
My son (aged 7) and I have been invited to spend the day with some new friends and their autistic daughter. We’d like to take a little gift for their daughter and could do with some advice. She is 5 years old. And, whilst my first thought is that we behave entirely as normal (it wouldn’t occur to my son to do otherwise I’m delighted to say) do you have any tips as to what we can do, or not do, to make the day as happy as possible for everyone?
LikeLike
May the blessings of our God fall upon your shoulders, scatter at your feet, and enfold you with His love!
LikeLike
http://www.fraxa.org/
i hope you find this helpful…there is hope at the end.
Liz
LikeLike
Hi Julie and thanks for sharing your story. My son is on the spectrum and at 4 and a half he is making excellent progress with speech which is his major hurdle. We live in Australia and are very keen to make contact with any other Australian families who have made the move to the UK due to the exellent council and educational services available to kids with ADS. Do you know of any such families? We’re keen to hear about their experiences and whether the big move has been worthwhile for them and their kids.
Keep up the beautiful knitting!
Cheers, Katie
LikeLike
I have just finished reading “Jodi Picoult’s” new book called “House Rules”, about a boy with aspergers, it really enlightened me, and my heart goes out to all of you who battle with this each day. You and your children are miracles!
LikeLike
Hi
My nephew was diagnosed was Autism Spectrum Disorder (ASD) at the age of 2. My sister knew something was different with him even though he is her first child – speech was slow and limited, hated loud noises (especially motorbikes and sirens at the time), didn’t crawl till 13 months and had a high pain threshold and flicking paper for 20 minutes plus also lining his cars up.
The health visitor kept saying it was normal and that boys are generally slower than girls. My nephew is 3 going 4 this summer.
My nephew has some speech but when he gets frustrated he hits, screams and throws his head back. He doesn’t always understand.
As an Aunt of an Autistic child, I usually don’t get get the hugs and kisses that I want but I want to share a memory that happened only last week and took me completely by surprise but in the words my nephew told me “I love you” and “I need hug”.
I hope that this gives other people the same hope it gave me.
LikeLike
Lovely to read such a good description of ASD and the joys (and stresses) of having an Autistic child.
My son has Asperger’s , and was diagnosed officially age 9. To give some hope,after a very traumatic couple of years trying to find him a suitable secondary school, he is now 19, passed GCSE’s, has completed an NVQ in Catering at college, and has just started his first job-as a trainee Chef! Although we know he will always require some degree of care, we are so proud of him!
LikeLike
My son has Autism and global developmental delay and also deaf in his left ear. He was nearly 3 1/2years old when he was diagnosed but we knew there was something different about him about 12months before this. He is coming up to 10years of age now and is in main stream school. My mum found your blog and sent it to me and over the next few days I will go over it start to finish…I have looked at some of it and i sit here nodding in agreement with what you say and understanding some of what you go through each day
LikeLike
I have just finished reading “Jodi Picoult’s” new book called “House Rules”, about a boy with aspergers, it really enlightened me, and my heart goes out to all of you who battle with this each day. You and your children are miracles!
LikeLike
excellent post. to be truthful i am not sure i understood it completely. but, wanted to chip in and leave a comment anyway. are you a journalist by vocation?, because your blog is really good.
LikeLike
Ive just found out that social worker has told a parent that her son is to young for respite, hes 6years old she said hes got to be 8years old… thats not right
LikeLike
what a great page, my daughter is autistic aswell. knitting and features on autism my favourite combination! but i would love the patterns of your animals thanks Melissa
LikeLike
What a wonderful page. Olive also loves rolling credits, CNN news, the stock channel, or anything with a moving ticker at the bottom of the screen. She’s also practically impervious to pain.
LikeLike
AMDG+
Dear Julie;
Not long ago I stumbled across your website and was drawn by its winsome knit critturs as well as your personal story of life with dear Toby.
We are parents of two disabled children, one of whom is autistic. We adopted our special daughter at age three; she still lives with us now, at age 35.
R. appears to be higher functioning than Toby. Her functional age ranges somewhere between 3 and 8 years; she can speak, but doesn’t communicate well with the speech that she has. I am happy to say that the perpetual mood swings and rages have lessened considerably over the years, probably in large part because we have learned to adapt the environment around Renee [as you do with Toby] to lessen events that can trigger the outbursts.
As parents of special needs children, both through our own research and the advice of others, we encounter many ‘rabbit trails’ in search of help for our children. So, I hesitate to share a tip, but also would feel remiss if I neglected to share something that might, might be helpful to Toby and to your family.
R. is a stickler for routine and doing most things in her own particular way; if she is asked to ‘step outside’ the routine, she often erupts. For example, when she arises, she ‘must’ dress in her ‘play at home’ clothes, even if we are bound for town or church within the hour [which then necessitates her changing clothes again].
R. had never before been medicated for the autism, but recently the doctor suggested a trial of Lamotrigine [Lamictal]. Within three days, we could see a difference: she slept better; she communicated better, even initiating conversations [a rarity]; and her mood swings evened out! She was less ‘tied’ to her routines. In fact, after about a week, we were bound for Holy Mass after breakfast; when Renee got up, she asked if she should just dress in her church clothes!!!!
http://autism.healingthresholds.com/therapy/lamictal-lamotrigine
Praying for you, for dear Toby, and for your whole family.
LikeLike
What a wonderful site :O) My Mum loves the knitted animals and noticed the Autism links and your own story.
I have posted your link on one of our FB pages: http://www.facebook.com/Annakennedyonline
We give advice, support and help to parents and anyone needing it with regard to Autism while also doing our best to raise awareness. Our team includes some experts but is mainly based around Parents and those that actualy work ‘Hands on’ so there great experience to gain.
Away from Facebook we can be found on our own site:
http://annakonline.com/ please feel free to have a look and share the link.
If you have any questions please DO ask them :O)
LikeLike
Much love to you and your family, Julie, from another keen knitter and mother to an autistic son. A friend sent me the link to your site, it’s so heartening to be reminded none of us are alone, no matter how much it might feel like it!! xxx
LikeLike
Just wanted to say hello and let you know there is yet another knitting momma here who knows the trials and joys of having special children. 2 of my 4 children were vaccine damaged and are labeled as having “autism” thankfully when we realized what had caused it and stopped vaccinating our younger two have had no such challenges. My special boys are 12 and 10 (my other two are 7 and 1) so I can in some ways relate, especially to the post about having a child that is too large to handle and the frustrations that come with wondering how you will handle it as he grows only larger as time goes by. My 12 year old is high functioning. My 10 year old is nonverbal, he uses PECS at times and also facilitated communication with a printed out on paper “keyboard.” My 10 year old can be a real challenge as he gets that frustration and excitement you talk about your son having. Something slight like the playdough not smooshing the way he wants it can set him off and the kitchen chairs and table get shoved across the room and meltdown begins. And then theres the moments that are sweet, the times when this big boy of 10 comes and sits in my lap and snuggles me and wants me to give him kisses (he hasn’t except once ever returned the kisses, but he sure likes to get them). The tickles, the silly things he does, his fascination with the simple things. Through it all the joys and the growth in the LORD has worked in me has more than surpassed the pain. I could not do it with out my Father in heaven, but with Him all things are possible. He has given me the strength and grace to get through each day and the ability to see the joy amidst the suffering.
Feel free to get in touch with me on ravelry if you like, my name there is marliah 🙂
Blessings!
– Tara
LikeLike
Autism is a tough thing to deal with. One of my friend’s friend had it and I know how difficult it is for a person and his family/friends to deal with the things Autism bring. Thanks for the post.
LikeLike
Hi Julie –
I am so enjoying your blog – I taught myself to knit in the Christmas holidays, I’m not that good yet, and don’t get much time to practice.
I have 3 children, my eldest (12) has just been diagnosed this year with high functioning ASD, and the pediatricians think my youngest is also on the spectrum. It is liberating, refreshing, inspiring to read your blog and everybodys following comments about autism, it is so nice to know we are not alone – I always knew there was something different about my son, even when he was tiny, actually having an official diagnosis was a huge relief. He is a delight – he is very articulate, but finds it so hard to understand the un-spoken messages, and takes everything very literally. We can now understand just why he cant stand having his nails cut, or suncream put on, or why he cant cope with wet and dry foods touching…he says he always knew he was different too, but that he is proud of who he is, and proud that he has ASD. Thanks again. x
LikeLike
This is very interesting. thanks for that. we need more sites like this.
LikeLike
Recently I saw a segment of CBS Sunday Morning News showing the milestones being made with the use of the iPad and communicating with children and adults with Autism. I wonder if you’ve looked into that? Anything that would help in communicating with those afflicted would be a God-send I should think.
LikeLike
Thank you for your blog, I stumbled upon your blog by accident. My sons 6 epileptic and (possibly) autistic (awaiting diagnosis no ones in any rush here). Professionals say he’s on the spectrum off the record but to wait for diagnosis. So during the 6 years of knowing somethings different you don’t get help or advice so life is hard and lonely. He self harms by hitting/biting, but can also harm me too if its all too much for him, which breaks my heart.
I always carry his ear defenders in my bag as they save alot of issues when we’re out. He also loves lego and lines his cars up. tags have to come off EVERYTHING even soft toys before he tolerates them. If clothes arent soft enough i get them thrown out of his room.
Local schools dont have time for my special child, so lately he’s been home educated by myself.
I took up knitting as a way of regrouping. It takes me away from everyday for a few minutes. I can only do the basics but am going to try your patterns you very kindly shared on here. Huge thank you for your blog, makes me think I’m not alone.
Love to your little one xx
LikeLike
It is actually a great and useful piece of information. Thanks for sharing
LikeLike
I just found your blog because of your knitting, which is lovely, but I am also interested in this info about autism and reading about your son. I started a job this school year being a teacher’s aide in Special Education. I spend the day with a 5 year old girl with autism. Part of the day is spent in the regular classroom and part in the Resource Room where she gets special lessons. She is mostly non-verbal, though she can say quite a few words and is saying more every day.
When school started in August, A was very adaptable to the new schedule and we did very well together. But about a month ago, she suddenly changed. She will not wear her shoes, and refuses to go through the cafeteria line to get lunch. She has more meltdowns than she had before. I am new to this, but I am already smitten by this sweet little girl and want to do the best I can with her. The Special Education teacher has many students to account for and is not very patient with A about the shoe business and the meltdowns. I raised 3 sons and I have a lot of patience! If you have any advice about these challenges, please let me know. Thank you for putting this info out here. Cindy
LikeLike
My son is 35 and Has brain damage due to a viral infection of the brain that he picked up in the ,maternity hospital at birth.
He has a severe speech problem, that causes a lot of frustration for him and those who have to figure out what he tries to say.
He has a sweet personality. He managed to complete grade ten, I am unsure what level that is in England. We live in South Africa.
I have retired and now look after him and my mom of ninety three.
I have always knitted toys as presents for my personnel ( most were ladies, and there was always one for a stork tea).
My elder son has bought me your rabbit patterns and I am soo in love with them. They are just too adorable!! I have made three so far and my mind is driving me crazy with ideas for the dresses.
Unfortunately we don’t get the fancy wool that you use, but I found the wool I have used fir other toys seems to do quite well.
Obviously I cannot keep everything I make as a hobby. So I participate in a craft market two to three times a year in order to continue with my hobby and the balance goes as presents and charity.
LikeLike
Thanks for writing this down. I just(today) bought one of your bunny patterns, very lovely and well written and read things on your blog. That is how I came here to read about autism. My son is 27 and told me when he was 26 he was sure he had autism. May be strange to hear we didn’t know this earlier. I always felt he did things differently: always trouble sleeping, still has, difficulties with making friends at school, playing differently (my English is lacking me to explain everything) never took someone home after the ages of 12. I thought he managed himself after he started the study applied sciences. There he met some people a bit like him. People always said: how nice it was he did so well in his study but he is always alone, has one friend (she has a boyfriend) who he writes to and they sometimes meet (she has autism too). We are happy he finished his study at last and found a job. He lives on his own so that’s very good but as a mother you hope your children will be happy some day. He told me he feels alone and doesn’t actually know how to start meeting someone. So our live is totally different from yours I know. I only wish someone had pointed me in the autism direction so we could have helped him earlier. It is a bit complicated because his problems are sort of hidden for the outside world. I hope you don’t mind me writing something down. Thanks for reading. Wishing you all the luck and strength with your family. I’m glad I have my hobby, quilting and all things thread-related;)
Groetjes
Annemieke(from the Netherlands)
LikeLike
Thank you for sharing a little of your family’s journey. My son was diagnosed with high functioning ASD at the age of two also. (He is now nine). We were very lucky to get an early diagnosis and early interventions started at school and at home. Some things that we have found to be useful over the years include:
1) Exercise and playing outdoors. We are so thankful that our local community has an open gym night every week for kids with disabilities. It is a wonderful place for both the kids and parents to connect. We also try to get in about an hour’s worth of outdoor play every day (weather permitting).
2) Technology. There are so many wonderful apps now for kids on the spectrum to teach them social interaction and communication skills. My son also uses his ipad to help with math, spelling, reading, music and art. In fact, one of his favorite activities is an art app. At first, it was a struggle to get him interested in the ipad. But with repetition and giving him time & freedom to experiment with it, he is able to now turn it on and use it independently.
3) Support network. Having a child on the spectrum can be lonely and isolating for all members of the family. Plus, there is so much mixed information out there…just finding a simple answer to a question can easily get overwhelming. We have been lucky to establish a good open relationship with my son’s teachers and school staff, his primary care doctor, dentist, neighbors, etc. Finding on-line support groups and resources is also important. Here is one that I like: http://www.autismspeaks.org
4) Taking time to enjoy your own interests and hobbies. For some time, I struggled with setting aside time for reading, knitting, creating, listening to music, even going for a walk alone. What seemed like a selfish thing is now something I view as essential for this journey we are on. Being unhappy and resentful will not help my son or family. Finding joy in the everyday is good medicine, both for him and myself. Even better, finding a common interest is such a gift…one of our favorite things to do is listen to music together.
5) Laughter.
LikeLike
God bless you and your family. Thank you for sharing your story with the world at large. I’m glad you have the knowledge to help your son and yourself when needed. I arrived here today because of your post on your blog.
LikeLike
I just found your blog because it was featured on Typepad this week. I work with special needs kids in my local high school, and we see more autism than any other disability. I know from experience how tiring it can be to manoeuvre through a school day with an autistic child, even a high-functioning one: I can’t imagine what it’s like to care for one right round the clock. Even when they’re challenging, though, these kids sneak into our hearts. Kudos to you for helping educate others about autism. I’m glad you have knitting as your creative “me” time and your blog to keep you connected. Lovely patterns. All good wishes.
LikeLike
You will find that a compression weighted vest is very useful to help calm down a child or adult for that matter with autism
They can be expensive however one co that makes a great vest is
autisticvest.com it is zip front too so looks very nice and is weighted to boot! Very calming.
LikeLike
God Bless you honey!
LikeLike
Hi! My english is horrible so… 👏🏻👏🏻👏🏻👏🏻
LikeLike
Dear Julie, Thank you very much for sharing your experience with us. I can hardly imagine the strength, patience, love and commitment it takes to care for your son the way you do, every day, one day after the other. I truly admire you and your family. God bless you.
LikeLike
I have a severely autistic daughter who is now 14 , she was also diagnosed at 2 and early interventions were tried , unfortunately she didn’t take easily to any of them , but is now using pecs , and we have just invested in the proloquo app for the I pad which she is showing interest in , so fingers crossed , I love how informative and real your bit about autism is
LikeLike
My Super-boy is newly dispagnosed at 3 so we are starting to get our heads around what it means for us as a family and how we can support him to reach his full potential. Just discovered your blog and this page which summarises things perfectly for me. Thank you for sharing.
LikeLike
my son 12 27 now- never stop learning about ASD. Sometimes its nice to look for other things to divert my attention & I love your Cotton Rabbit site. Not a knitter myslef but maybe I will start? after all the nights are drawing in
LikeLike
I always knew my eldest son was different when he was born in 1979 , but it took until he was 16 years old before we had a diagnosis. He had autism and Tourette’s syndrome. He had managed to go to main stream school and take GCSEs whilst dealing with being bullied because of his tics and noises.
He really struggled and wanted to end his life. Luckily a lovely doctor helped him and he managed to get a job. Sadly he has never been able to deal with the banter that goes on in the workplace and can only work for himself.
I never thought he would manage in life but at the age of 27 he met a lovely girl and they had a baby, they got married 7 years ago. They have 3 children now. The eldest child is on the autistic spectrum but goes to main stream school and is very clever. My son will always be autistic and have Tourette’s but now that his life is more settled his condition is more controlled. Stress is his biggest enemy and his tics sometimes appear but with love and help from his wife and family he soon gets back in control.
To all of you out there with autistic spectrum children, do not give up, my son is proof that with love and support great things can be achieved. He is a lovely, kind caring man and my grandson is a such a delight. It has been a long and at times very difficult journey but I am proud of them both
LikeLike
Hi, my (child) is 32. A beautiful girl .she lives with me at home…..about 4 years ago I had a stroke….she James to my aid… She mothers me now….When helping me across the street she will hold her hand up like a policeman stopping traffic so I can cross safely…..then she throws kisses and waves to them…the whole town knows her and loves her…when she enters a story some one always calls her name and gets hugs… When in a day program and on an outing to BJS Wholesale Club….she led all her friends over to the drink machine and helped them all to drinks…..Every one was smiling as they watched these delightful young people…My daughter is limited in many areas..twenty four seven care with bathing,brushing teeth and is clueless as to the angers of this world…she never meets a stranger,very social and will wander off with out fear…We have become so close thru the years…..We call our selfs Thelma and Louise..lol..lol..It has been rough thru the years but we have had each other thru it all…I can’t imagine life with out her…If she becomes scared or anxious she will hug the life out of me unail it passes….if she’s upset with me,she will dig her nails into the top of my hands….This past year…two trips to the ER as my skin has thinned due to blood thinners….and the ski is ripped across and excessive bleeding occurs….she is unaware of the pain and trauma I go thru…Patitence is a blessing during these times…..Of course we miss our freedom,our child never leaving the nest..But God gives us the strength and the love to endure all as we grow older together…Our kids are special no matter the age…..bless all of you Annie
LikeLike
Annie here,forgive my typing,my iPad picks letters for me and I need an app here to correct mistakes..sorry
LikeLike
Would just like to let you know that I have enjoyed reading peoples different experiences with autistic children and being Grandma to our 10 year old grandson I find it amazing what my daughter has achieved over these years. The hospital advised that he would not walk, talk or be able to do many things and due to her challenges and hard work over the years he is very clever and loves visiting castles and going long walks learning the history of years gone bye plus does very well in main stream school. I recognise lots of his problems from the messages above and as he is getting older may be a bigger challenge to his mum. I find him so lovable and in particular he loves to talk to me about my knitting and always asks about all projects that I complete which includes some for him which he takes home and puts them amongst his favourite things.
I find that your information is a lovely relaxed way to learn more about Autism without being bombarded which can be confusing when searching websites.
regards, Ruth Fraser, Aberdeen
LikeLike
Dear Julie, thank you so much for your openness and honesty! I had completely made up my mind that I would only use Pinterest to collect ideas and inspirational images to lift my soul, and that I wouldn’t follow anyone! But then I kept saving images from you and kept noticing your gentle comment about living with Autism and I couldn’t resist taking a closer look! Being a Parent and Carer of Children on the Spectrum can be very lonely and your compassionate love for your Darling Son makes my heart sing and reflects my own feelings for my two precious Daughters!! Thank you for making a lonely Australian Mum feel less alone! God Bless you and your Family!! Your Creations are absolutely GORGEOUS, by the way!! 😍
Love,
Sarah! 🌻
LikeLike
Hello! I recently found out about your blog and have been admiring your adorable designs on Ravelry. I just wanted to reach out and let you know that I read your piece on Autism and that I’m thinking of you and your family. I live in the U.S. and have worked in one of our local elementary schools with children on the spectrum. Each one has a special place in my heart. I can tell from your writing that you are a strong and beautiful human being. I hope that you have found nothing but support since you originally shared your post. Lots of love to you! ~ Wendy
LikeLike
Hello Julie,
First of all, I offer you my best wishes for this new year which begins, very good health and a year filled with joy and happiness.
As I understand you, my daughter who will be 19 years old on January 10 was diagnosed just a year ago despite having been followed by child psychologists since the age of 18 months! It is a relief for us to put a word on his hypersensitivity, his difficulties in communicating.
In France, there are many years of waiting for care and especially for listening to parents when we say that our children behave differently. Our daughter has been out of school for 4 years and follows distance learning courses to pass the Baccalaureate, we are very proud of her and of all the progress she is making, she wants to become a French / English translator, a language she has learned all along. alone with videos on the internet, she has a very good level according to her teachers. She was able to adapt to her handicap for the lessons, the most difficult for her is in the relational and the emotional so going to take face-to-face exams is very difficult for her, and take the bus, go shopping (too many people, too much noise, light, smells) we accompany her a little more every day in her adult life because as she says: “one day I would have a home, I would manage on my own but mom and daddy, I just need help calculating my budget! ” She is angry with the numbers and has no mathematical logic.
As parents we use the internet to find answers to difficult situations. I’ll take a look at the links you gave to educate me even more. Thank you very much for this sharing and thank you for your little animals that I knit with pleasure and which make the children happy to whom they are offered. Cathy
LikeLiked by 1 person
Hello my dear! I have followed your blog for years. I have always loved your eye for beauty and knitting and loving your son. I did not know much about autism till a few years ago when our adopted son was diagnosed at the age of 2 years old. I am learning so much and soaking up all kinds of information. Thank you for sharing your journey with the world. As a fellow autism momma I am so thankful.
LikeLike
Thank you for sharing your journey with Toby and providing valuable insights into autism. Your experiences and the resources you’ve mentioned offer support and guidance to families navigating similar paths. Your advocacy for early diagnosis and intervention, along with your practical tips, are invaluable for those facing similar challenges. Your strength and courage are truly commendable, and your willingness to share your story is a beacon of hope for others on similar journeys.
LikeLike