I am a 30-something wife, mother and Christian living in Scotland.
I am raising twins, both of whom have special needs. My son has classic autism, severe learning difficulties, global developmental delay, pica and neurofibromatosis type 1. He is non-verbal. His twin sister has selective mutism, gross motor delay and will be assessed for autism later this year.
I have a strong faith. It took 10 years to have the children and they were born as a result of IVF after a very long journey of infertility. I have been married almost 15 years and the children are aged 4.
The children currently attend nursery but will be starting school in August 2013. They are a huge blessing to me.
I am currently a full time carer for my son but have done many jobs over the years and trained as a teacher many years ago. Life is now full of nappy changes, hospital appointments, meetings and reports but I believe I still have a voice and can use it to encourage, make you smile and share with you the story of my family. I hope you enjoy reading my blogs.
Love and blessings,
Miriam
I am new to reading your blog, but each time I read it I am touched as you pour out your love, sadness, and hope. I have worked with an applied behavior analysis provider working with children with autism for 6 years. I also am a fellow parent and have a 1.5 year old boy. Thank you for sharing your story. I will be praying for you and your family. If you ever want someone to lend an ear please feel free to contact me. I have worked with a variety of little ones with all different behaviors and needs. God Bless you and your family.
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Hie Miriam it’s Rutendo. I got your blog details from Evie. I’ve left my email add below.
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I have nominated you for the sisterhood of the world blogger award. You do not have to accept it. All I really wanted to do was to put a link on my site to yours so others may find you and enjoy your writing as much as I have .http://mythoughtsonapage.com/
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Hi there, I just found your blog. My son Cooper has no words at age 3. No diagnosis yet…What I do know is that I NEED to find other moms that are going through the same situation because it’s too scary to do alone. I just read your About page and I am thinking I found a good spot. Looking forward to reading your posts. Thanks!
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so good to have you join with me. Praying for your son.
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Great to have you journey with us! Welcome. My son Isaac still. Has no words at 5 and a half. It is heartbreaking but I take delight in the other things he is doing and I am so thankful to God for him. I learn as much from Isaac as he learns from us. Much love from a mamma travelling a similar journey?
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Blogging is pretty new to me and I was wondering if we could chat about the possibility of you contributing a guest blog for me to use over the summer hols. Send me an email if you are interested. Thanks
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Of course. Will email you x
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Hi Miriam. I just found your blog. Thank you for sharing your journey with us. My only child, Daniel is autistic too. Diagnosed as mildly autistic, but still, he’s left far behind as compared to “typical” children. He speaks a little (one word only). Keep on writing Miriam. Its comforting to know that there are people who is sharing the same journey. Now I dont feel alone at least. I admit that FAITH has helped me a lot in accepting my son’s condition. Its not easy at first but I’m coping from day to day. May GOD give us the strenght to be the best mommies to these kids. Im not sure if this is appropriate, but in my religion, all these special kids are called “children of heaven”. They will straight go to heaven in the next life. I hope this is true. Im proud to have one. In your case you have two. 🙂
Hugs,
Adia
Malaysia
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I read your blog often as I can relate to so much of it. We also have a lot in common. I have 2 year old twins(also a result of IVF). I have a 5 year old, she is non verbal with an undiagnosed condition resulting in sensory issues and behavioural problems and GDD. Incidently I am also a teacher! Would be happy to email. By the way i think you do an amazing job with your twins,
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Id like to make contact – we are in v similar positions. My five year old daugther is v much like your son. ASD, GDD, LD (prob severe). Im in Scotland too and recently baptised. I read some of your posts and identfied so much with you and with how you are approaching your situation. Im fairly sane altho sleep deprived. Id just like to speak to someone in a situation like mine.
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I shall certainly be in contact via email Sarah. Xx
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Thanks for contacting me! I have email you.
Blessings!
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Hello there Miriam. Good to find you.
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Thanks for such an honest post. You are a real inspiration. We will remember you in our prayers.
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Miriam,
Thank you for putting to words, beautifully I might add, the emotions so many of us share. The post Grieving for the Child I Haven’t Lost resonated deeply for me. I have a daughter, now 25, and I can tell you that each milestone that friends have experienced with their own children bring on the grief cycle I have become far to familiar with.
I’d like to ask permission to modify your post with “her and she” so I can share it with family, of course I will credit you.
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That is fine for you to do that and credit me. Thanks for asking x
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Hi I have just found your blog. Im also living in Scotland. My daughter has some development issues would love to speak you more
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Hi Miriam,
I am a special needs teacher and author. I would love to include some content from your blog in my next book. If you could email me I can provide more details.
Many thanks,
Adele
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I just found your blog and I am amazed at how similarly we think. I too am a parent of a child with “special needs” (a term I am just starting to be comfortable using, although not really…) and I just recently started my own blog about my journey. I can relate to so much of what you say and feel. Keep focusing on those precious moments and take care of yourself so that you can keep on doing what you need to do. Hugs from across the ocean.
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Wow just came across this blog and it runs true to me! I have a non verbal 5yr old with what now have learnt is the severe end of the spectrum and all the issues that come along with it to boot! He has little understanding and we are trying to teach him PECS at the moment for his voice to others as he is a hand grabber then leads to what he wants at home, Gorgeous boy though and such a joy but have to say am so sick of reading pages and posts where nobodys kid seems as bad as mine and seem to not understand or be able to relate having a child with such severe needs, this a breath of freash air for me to read your posts because all tend to see is Autism is such a amazing gift am blessed blaa bla but in reality that isnt always the case and yes you have to grieve sometimes its bloody unfair, Owen was the 2nd child so we would not have a spolit “only child” and they would have each other play with etc as we have a very bright 8year old daughter and she now finds it very very hard, feel for her so bad she really trys with him but he does not want to know and will start slapping n hitting himself in d head even when she just enters the same room as he is in………she always asks why does Owen hate me so much cause i know he does it upsets me and is so sad and so very hard 2try and explain to anyone let alone a child of 8yrs! Truth is unless you live with this Autism day in and out then you cannot start to understand it. Its just so complex and am always still learning! Try not to think about the future and always have hope and the best we can for him for now. He is a complete joy though to look after at home mostly! Smiles and laughing from moment he opens his eyes to when he goes to sleep i just really really dont want him to grow any older just stay like this and this age forever would suit me fine!
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Truly, I am never been one to say to parents ‘have you tried this’?, how annoying that must be. But after the past two years of meeting an entire new community of young non speaking autistics who communicate through RPM with letter boards, I can’t not mention it. This is the conference that I just attended, with young adults trying so hard to let us hear their ‘voice’.
https://growingkidstherapy.wordpress.com/2015/12/10/nonspeaking-youth-advocate-at-tash-conference-2015/
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Miriam,
I would like to talk with you.
Please email me ~
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Hi, what is your email address?
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Thank you Miriam for sharing your own life experience with us.Your positive attitudes towards life is really a motivation as well as inspiration to many parents of children with special needs.. I am pretty sure that this blog will be helpful to understand the feelings and needs of children with disabilities and their parents in a better way. It can act as a useful guide in rendering quality care.Your faith is your strength and its our inspiration.
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Miriam, I have no doubt that your blogs and articles released all over the internet are done with a good heart and determination to help many other parents around the world. I believe this is your aim. However I do feel that your very honest thoughts can be of harm to your children in the future. Your daughter from what you have described seems an intelligent girl, who with the correct support will aim to have her own career in the future. Many potential employers, even at the moment will do a google search on potential applicants. A quick scan of your blog may put them off. As a teenager potential bullies may read your blogs and articles. Hopefully in the future, as an adult your son may be able to read these articles too. I want you to honestly think about what you are writing. To be constantly compared to a child without autism will break his heart. Do what you are doing, if you must, if you really feel it will help others and be good therapy for yourself, but please, please, for both your children, change your name, stop using their photos, stop taking away their personal privacy from them. This isn’t just your story, it is theirs too, and they dont need all the details of their issues plastered all over the internet
God Bless
Jillian
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I would like to ask you about linking your blog to my autism resource web page. How can I contact you?
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I can be contacted by email at miriamgwynne1@gmail.com
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I have been reading about your beautiful children and your dedication to helping them grow and develop in their own ways and on their own timetables for a few years now. I am delighted with every step forward and send you virtual hugs when yet another challenge arises. Stay strong and keep posting — you are a gifted writer!
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Thank you very much.
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Hello Miriam, I stumbled upon your blog today. You post about the tray of pasta made me cry. It’s a simple gesture, but such a thoughtful and powerful one!
You probably have had a number of therapies suggested to you, but I am going to suggest one more. I read about it in a book call the Fabric of Autism. The therapy is call HANDLE therapy — holistic approach to neuro-development learning effiency. The founder of the therapy, Judith Bluestone, had autism.
While my understand of most autism treatment is limited, I understand that this one is not about getting the child to conform to some societal norm and repetitive training. Handle therapy looks for reasons behind a child’s struggles and finds the issues behind them and strengthen those areas. I think the book might be worth a read. It looks like there are a few practitioners in Scotland as well.
http://www.handle.org/providers
Warm wishes,
Vivian
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Miriam, I’m a former teacher and 1-1 for children with autism. I’m now a holistic therapy tutor and I do a lot of workshops and therapies for children with autism and their families, and am studying for a postgrad cert in working with people on the autistic spectrum. So although I haven’t a child with the condition, I can really relate to what you’re experiencing, so many parents have told me exactly this. Thank you for sharing and helping so many other parents to see they’re not alone. I just hope that one day schools will be more accepting and supportive. Thinking of you and your family, and thank you again. x
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i get your blog .i, have aspergers…i do a blog details below ..getting a diagnosis does NOT
mean VERY VERY SADLY .the right kind HELP ..try your local M.P SUPPORT GROUPS
MARK
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Your blog completely resonates with me, so many heart felt posts…thank you for writing with such honesty x
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Thank you for such a lovely comment.
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Hello Miriam,
I found your blog on facebook and I read your article about what it’s like to not be able to leave a child who has autism unattended. I don’t have children of my own, but I can feel your struggle through your incredibly heartfelt writing. Not only that, but I can feel the unconditional love you have for your son throughout. I have a childhood friend who is low functioning autistic, non-verbal and sometimes violent and it is stressful going to dinners and simply walking in public to make sure he won’t hurt anybody or become too loud. His mother makes it through the night by believing she was chosen fora reason to take care of him and nurture him, and that is true; not everyone can do it. It takes incredible love and strength and you have the compassion in you! I only found your blog just a few minutes ago but I am here to stay and support all your wonderful writing. Never ever lose hope or faith, which everyone needs, and people like me are always here for you.. just look at all these wonderful comments! I hope you have a fantastic day today, as it was yesterday and will be tomorrow ❤
With love, Kira
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Hi Miriam,
Lovely blog! I thought you might like watching an animation I made to raise autism awareness among non-autistic children. I hope I can get the school’s attention so it reaches the right audience. I’d love to hear what you think!
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Miriam, so glad to have found your blog! I am a teacher in the US who has one student who sounds so much like your precious son. ( I’ll give him the pseudo name of John) He has severe seizures and PICA. He is non verbal and constantly seeks after vestibular input as well as oral sensory input. Joh chews on and eats everything. Just in the last two weeks, he has swallowed 2 therapy balls belonging to one of his peers. John is a medical anomaly….swallowing things so large with no effort and with incredible speed. I am trying to find an item large enough for him to receive oral sensory input but something he cannot bite off or swallow. Have you found anything like that for your son?
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i have aspergers
my blog http;//mark-kent.webs.com
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My heart goes out to you. Your situation rings so true to mine. Mom of twins and my son has a diagnosis. God never gives you more than you can handle. Praying for you.
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Amen!
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melt downs are very very common with autism./ i ,have aspergers
my blog http;//mark-kent.webs.com
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I live in Australia. If I could help, I would. I have 20 years experience in this area. It would help me too, I want to share my knowledge. Do not hesitate to ask. Given freely no strings ☺
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Hi Miriam,
I love your article and think that topics like this should really be heard. I work at Huffington Post Germany and we would like to translate and publish your article with your permission.
Please get back to me if you’re okay with us publishing your article. You can reach me on my work email.
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I just recently saw an article that had sections of your blog in it. My daughter will be start Kindergarten tomorrow and she is not toilet trained. Your blog about you daughter starting and not toilet trained put me at ease! I’ve been stressing. My daughter is not on the autism spectrum, but she is extremely small. I thought I was the only one in the world with a Kindergartner not toilet trained!
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Dear Miriam, I have been following your blog for a some time with a big interest. But the one by your daughter Naomi “The Reasons I Don’t Like to Eat” really touched my heart! I feel so much sensation going on in her little body, so much resistance and lack of understanding!!! It is so important to share her thoughts and way she is seeing and feeling. I am learning from her! I am Neuroscientist and Nutritionist who works with children like Naomi and for me it makes so much sense what she is talking about! Many thanks for all your great posts, information and inspiration for others! I would love to do something together to help your fantastic audience. You can contact me via http://www.liveright.eu Best wishes, Irina Schurov
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Hi Miriam,
Thank you for your honesty, I’m sure your “I don’t want to be an autism mom anymore” Post was a difficult one to write, but helpful to others.
I run a website called Autism Journey and I’m wondering if you’d be willing to let me cross-post that blog to my website?
You can email me at stephanie@autismjourney.org if you’re interested.
I look forward to hearing from you
Stephanie
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Provided you link back to me fully I would be honoured for you to use that piece. Thank you!
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Hi Miriam.
I happened upon your blog from a friend’s FB feed.
I’m a 46 y/o, diagnosed in 2002 with ADHD (mixed type), recently have learned that I’ve ASD, specifically, Asperger’s.
Your posting about regarding Christmas (or any holiday for that matter) with Autism was like hearing many of my thoughts being parroted. Even as a child, I found all of the decorations as mesmerizing as they were overwhelming. Having more than one present was the same: too much.
Because all of those around me are so enamored with it, I’ve always gone along with the festivities. I’ve voiced how I feel, but was derided, “Oh stop being a Scrooge.” Or “Don’t be such a humbug, try being happy.” Or worse, I’m called antisocial… which I correct them that they mean “avoidant”, and they further ignore me.
As with any social setting, if there’s little-to-no chance of an interaction happening, I find the environment tolerable. But when an interaction is almost assured, though I’ve learned some amazing comping mechanisms, I’m exhausted and mentally stupefied afterward.
And many think my explanations are excuses to be alone and miserable.
Your family is fortunate to have you, well done!
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Hello, Miriam!
I have recently created a guide to Autism friendly leisure attractions in the UK along with general information on available services and helpful information to assist those caring for an autistic adult or child.
After reading through your blog, I am inspired by your personal insight and remarkably telling stories.
I am continuously looking for ways to improve my blog post and think it would be a great idea to compile a list of Top 10 Helpful Tips by mums and bloggers alike who have first-hand experience with autistic children and adults.
Any information on upcoming events or useful tips would be great to feature on my blog!
Take a look at my ‘Ultimate Guide to Autism Friendly Days Out, Shopping and Travel’ here:- https://www.netvouchercodes.co.uk/blog/ultimate-guide-to-autism-friendly-days-out-shopping-and-travel/
Feel free to share it on your page also. Thanks and I hope to hear from you soon! Any feedback is welcome.
Best Regards
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I am a grandmother with 3 on spectrum to a 30 something daughter
Your posts are like we wrote them ourselves
Much love and empathy soul sister xx
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Hi Miriam.
Play therapy NI shared your blog “Why I don’t eat” . Thank you so much for sharing this as it has helped me understand possibly what my daughter is going through and had really touched me. Since she was 13 mths old she only eats brioche rolls, square cheese and certain chocolate. She struggles to sit with us at the table and prefers to eat alone when she wants to eat…I have been asking for help since she was 18mths with no avail. Just wondering how did you get your daughter to open up and have you been having any support?? Really appreciate any advice.
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Hi, thank you firstly for reading the blog and commenting. Help has been rather limited although we have seen camhs and speech therapists though no-one really seemed to help much. Naomi slowly opened up starting from when she was around 8. It took a long time for her to feel confident but in time she was able to collate her thoughts enough to share the blog aged 9. It helped me understand her and she agreed to it being shared but she has no idea just how many lives she has changed.
I hope in time your daughter is able to communicate her difficulties too and get the help she needs.
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HI there, Miriam! My name is Mary Carver, and I work for the editors of ForEveryMom.com and FaithIt.com. (I apologize for leaving this message as a comment but could not find another way to contact you.) I recently came across your articles, “How one 9 year-old Described her Brother’s Autism in just a few pen strokes,” and “To The Parents Of The Disabled Child Who Doesn’t Look Disabled,” and both are so fantastic. I really think our readers would be encouraged by them as well.
I’m writing to ask if you’d give us permission to publish those pieces on our sites. Like always, we would give you full credit as author, link back to the original post, and include your bio and head shot.
Please let me know if you have any questions at all, and if you’re interested in sharing your words with our readers! Thank you!
Mary Carver
mcarver@outreach.com
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Hi Marc, it would be an honour to be on your sites any time. You have my full permission to use those pieces anytime. Thank you.
For future feel free to email me anytime at miriamgwynne1@gmail.com
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Hi Miriam,
I’ve come across your poem ‘Autism is’ and wondered if I could use it in my programme for a charity concert I am organising for a local Autism charity near me (Im in Hampshire) I am happy to credit you and faithmummy if you wish?
Many Thanks,
Hayley
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Of course! Feel free to use as you wish with my full blessing. You can credit either to faithmummy or myself. Either is fine. Thank you for getting in touch. I hope the fundraiser goes well.
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Thank you for sharing as it’s nice not to feel alone as I have been through similar things myself
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Are you the lady who wrote the article on the award ceremony for special needs kids? We found the article very inspiring and would like to have some input on something.
2 Brothers in The Kitchen
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I probably was but could you tell me more about the article just to make sure it was myself? Thanks!
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I just want to say thanks for your articles and encouragement. My 7 year old has huge sensory issues, suspected autism and struggles with everything social, emotional, sleep and food. I love him fiercely but there are parts of this parenting journey which are so isolating. People can be very cruel (he is bullied) and I feel like some days are a battle to help him stand his ground and help him find his place in the world. Your article about the out of season wildflower made me cry, it was so perfect. Your children are lovely and look so happy. You’re doing a great job. Thank you.
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Hi Miriam, my son and brother are on the autism spectrum and I manage the learnfromautistics.com blog/website which aims to connect parents and caregivers with Autistic voices and expertise. Can we connect via email? I had a few questions for you. jennagensic@gmail.com, Thanks!
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Hi, I’ve sent you a tweet but in case you dont see it I wanted to ask your permission about recreating your brilliant autism elf and photos. I work as a Speech and Language Therapist (SLT) for Forth Valley NHS and as an Autism advisor for Scottish Autism at New Struan School.
I wanted to recreate a similar idea using a teddy/doll but without the xmas theme to promote Autism on the SLT Forth Valley facebook page. I would obviously credit you on the post but I didnt want to do this without checking with you first. I really do think you have come up with a quick, snappy and visual idea to get the reality of Autism across.
Kind Regards
Georgina Simpson
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