I can so relate with the isolation the diagnosis brings . I had to quit my job. I wasn't much of a social person. But diagnosis made me even more isolated. Felt like people around me belonged to a whole different world and I was on my own. Even my sister with whom I shared a lot just wasn't my confidant anymore as she didn't understood what it is. I couldn't share with her a lot.Not her fault , but i was so engrossed with my son that i just made a shell around us. Now most of my old friends are virtual friends only. And other autism moms. But honestly, i don't enjoy social gatherings anyways. So fine by me 😁😁.
I agree with the diagnosis making me isolated from everyone. I didn't want to go to parties, or church, or anything. Seeing other kids who are not autistic makes it very hard to see.
You have just described my life, since my child was born. We very quickly isolated ourselves from friends & family. We only told my parents & 1 close friend. Waited over 2 years for my husband to tell his family, for fear of their rejection, which happened anyway. We are from a small town & it always feels like everyone is staring & glaring. They have never raised a child with autism, yet they have so many opinions.. We realized early on, that it's far easier to go to a public place in the city, with all strangers. We can be ourselves, our child can simply be him. If people are staring or whatever, I can just blow it off. I think I also feel guilty when admitting how exhausting every day is. I feel like I'm complaining about this little person that is my heart & soul, so we try to find the joy in each day, & love him with all my heart...even when he was ripping chunks of my hair out! Nobody understands, even some autism parents with less affected kids don't understand. I do not have anyone that I can leave him with, so it's him & me. My husband works away from home for many months at a time, & my parents are uncomfortable watching him. One most important thing I've learned, is that my child got over his meltdowns far faster than I did. For me, I felt like I failed & let it ruin the day. Now, I have learned to take my cues from him. Once he moves beyond a hard situation, meltdown, aggression, whatever...I have to move on too. Give him a hug & move forward with the day. My family just can't understand that. They feel he should be punished for the day, & instead, we get back on track, & go get that ice cream & giggle & have fun! Thank you for being a part of our life! You are the one person that makes me feel less isolated. Thank you!
I was feeling very lonely today and thought about you, I just saw you uploaded a video exactly about my struggles. Thank you so much for that. Today while my walk to kindergarten I felt a lump in my throat, trying not to cry. There's nothing wrong in particular nowadays, just being lonely. I don't have an energy to go for a vacation. For me, my home is the safest place when we - me and my son can rest. When we travel somewhere, I'm taking care of him 100% of the time, as I'm a single mum. And it's very tiring for me. I prefer just one-day trip and resting for the whole week afterwards. We've got some social gatherings recently and it was exhausting. Also some doctor appointments, which makes me anxious. And then, someone pointing out that my son is tip-toeing and it's not good for his posture. Yes I know that. I've been to specialists, but I don't have energy and money to drive and pay for therapies and exercise at home as much as we should to make things better. I'm doing a lot besides that. I'm focusing on his mind and emotions, we've been to another physiotherapist saying same thing "he's doing great mentally but he needs intense physiotherapy". I was very sick for 2 weeks and it caused a lot of bad behaviour and emotional problems arising for 2 months, we're good finally, so people don't talk anymore how he's emotionally unstable, but about physical issues. I'm feeling hopeless a lot, struggle with my mental health, money. I prioritize meeting friends over other things, but there's not enough time (and energy) to do everything. Today I got answer about our holiday with play therapy - there isn't any possibility to attend as a single mother, I would have to bring a nanny as well, so it's well out of our reach, even 4 day vacation. I wanted to cry, because I don't have many friends left, they want to meet but I can't bring myself to travel there. I live with my son in 1-room flat and cannot host guests here. Sometimes 1 or 2 people visit for an hour and that's all. Money is a huge issue for me, as I'm on social support (it's great I have that, but I'm not allowed to earn any money by myself), and I'm too afraid to resign from that totally and go to full time work, as my son still needs me frequently during the weekday. No family whatsoever to help me. I have a lot on my plate and even can't afford good psychotherapy. Trying to manage somehow, I know techniques to help myself, but still, not having emotional support is hard. And not having much time for friendships don't make it easy to find support. When I had a choice to pay for psychotherapy or pay for food, I've chosen food. I even think from time to time, to give my son to his dad, who's in another country and always complaining he doesn't have money for child support. But I know it would harm my child so how could I do that. Some friends are saying I should give my son to his dad for a week, but the journey itself would be tiring for us, costly and I wouldn't have peace of mind anyways. As I'm writing it, I realize I'm doing a great job, and I should give myself more credit for that. Doing it all by myself, with no support from anybody. I shouldn't ruminate I'm not doing enough, because I do everything I can. My kid went from level 3 diagnosis at age 3 to level 1 now, he's having friends and doing great overall. I've done therapies at home during pandemic for more than a year, though him to speak fully at age 4, potty trained, showed him how to play. It's the therapist job that I've done full time for couple of years and now specialists say my son is a miracle. As it comes to sleep, I almost didn't have any until he was 3 yrs old, and he started to sleep normally a year ago when I introduced melatonin, it's been life-changing really. He's now sleeping 10 hours at age 7, while he slept 6-7 hours until he was 6. I was desperate for something for him to sleep, because I was so sleep deprived and still I have sleep issues. But it's getting better. All caregivers deserve huge respect
I’m sending you a huge hug. It’s hard I know and sometimes we don’t know which way to go. Even a cold shower to shock your system to make you stop thinking for 1 min can help. Breathe take one day at a time. It won’t always feel this way. You right your doing a fantastic job . Sending you a big hug x
I am 70 and my son is 41 (autism & OCD). Yes,the isolation is the most difficult part of it all. I encourage young mothers to reach out for as much help as they can get and take care of themselves physically and mentally. There is so much support available these days and your channel is a wonderful example. Sending all the struggling mums big hugs. It's a long journey but balance is the key. Self care means you will be here longer for them.
Thank you so much for sharing! I can resonate so much with everything you’ve said. Many of these feelings have resurfaced recently… for no reason in particular. My son is now older and I’m reaching a new level of grieving where he “would” have been. I feel audio for feeling this way. He’s such a sweet boy and I love the bones of him! I grieve the person I was before the diagnosis… I feel an overwhelming sadness when I look at his baby pictures. I never imagined to find myself and him in this place. It’s a club no one signs up for. 90% of the time I’m so positive and hopeful for the future. But every once in a while I find myself in this place.. that’s when it’s so wonderful to connect with other mums who understand! Thank you!
'Journey' is too soft a word to describe living with a disability or caring for someone with a disability, day to day. It is an EXPEDITION equal to trekking to the polar regions, Mt Everest, Lord of the rings etc. What has helped me is to connect with parents living a similar experience and having my core family and friends support base. Let go of people who are judgemental even if they were once part of your inner circle. Sometimes strangers have been kinder than some relatives and friends. Essentially we are freaking warriors!!!!
I withdrew from all friends really. Wife did mostly too. I haven’t spoken to my oldest, closest friends in a few years now. Too tired and can’t imagine being social again really. My son had a lot of progress this year but I’m so hyper focused on everything required, I can’t imagine going out with a friend for the day or evening. Its been so long now and I feel a lot of guilt on it and now have social anxiety which is opposite “old me.” It’s odd how so many commonalities show up in our world. :). We are very happy though. There’s ups and downs and stressors but overall we are past those early on adjustments. It is odd how at home, we barely notice any autism, but in public it is like putting up a neon sign for us. I’m too tired and it’s too late to make such a long comment. Lol. I can’t put together a proper thought. I’ll try again another time.
In just 2 weeks we will get our diagnosis, but we already know our little one is on the spectrum. And I am in tears writing this, but everything you say it’s true. It is a struggle, every day, but I am happy even if I am tired. He is my little boy and I love him more than words can say. I will fight for him, forever! Who ever reads this: you got this, you are not alone! ❤
Very sweet thank you! It was a relief to have a piece of paper finally. I’m finding out it’s not the last test either. I’m finding for just about everything each place does their own assessment. The public school for qualifying for 504 he had to do a “pupil appraisal” it’s definitely shorter than the Actual 3 part text originally. Here our school district lets them start at 3yo
Oooh the early years were so tough. Lack of sleep absolute worst. We have twin girls on the spectrum and I don’t think we fully appreciate how hard the early years were for us. They are 8.5 now and life is so much better. But we don’t socialise. My free time from the girls is for my husband & myself (or just myself). I think for us it helps that we are both more introverted. However I can see how really social parents would struggle with the isolation. My best friend and I met years ago working with adults who have disabilities. So she’s great & very understanding about our lives. Anyway. Great video. ❤️
Is been 5 years since my son was diagnostic and 4 years from my second son sometimes feeling like I have to explain everyone what autism and just thinking about doctor appointment, dentist, and make me feel overwhelm ed and mentally exhausted I relate to you hundred percent because I stop take care of myself. I have lupus and that make things a little bit more tricky but trusting in the professional people is the best that you can do they give you ideas support groups, everything I have a wonderful teacher that honestly I think she’s been the angel in my life .
Thank you so much for making this. I'm about to listen while doing the dishes now the kids are asleep 🤪 #mumlyf Just last night, I woke my husband at 4am in a mess of tears in a state about our (honestly, shockingly unprofessional) SLT and how that might effect our daughter's progress. I have worked so hard for her to have so many wonderful things - a nurturing home environment, wonderful kindy, sensory swim, etc etc, but as soon as something goes awry the grief and guilt is overwhelming. My husband is amazing (and frankly, our daughter's favourite person) but I believe Mothers carry the weight of their children's care so deeply, it is in our bones. And man those bones get tired sometimes. Lots of love to you, thank you for helping me on my journey x
You have rescued me from drowning in my overwhelming pain today. I had a very bad day and you have helped me bounce back. ❤❤❤ thank you for your vulnerability Tara! All your content is amazing, but especially this one directly to us moms who carry sooooooooo much on that plate.
As always, very much here to feel like we are not alone, since sometimes it feels that way. Thanks for sharing! I, too, feel at peace in organizing my home and it helps my mental health. Truly therapeutic to my brain🙌
Here is the problem my parents when I was feeling overstimulated or just generally in a bad mood what they thought is it was just a regular tantrum and they were like trying to discipline me saying that that's bad behaviour and I just felt scared like why are you doing this to me? I'm feeling frustrated. So you are a really great mum, in terms that you listen to your child and that you're a good parent!!🍡 And I have to agree with you tantrum is an unfair word I wouldn't say that to my child if they were having a meltdown!!💕
Oh Tara, how lovely is it that we come here and feel not so alone. Than you for all you do. You are an amazing mamma. Thanks for the hints and tips - and by gosh, do we need them. Xx
I found a sense of grief when my son had his diagnosis. My son didn’t get invited to party’s, or have friends, and I felt angry. Angry at the world. Angry at other people. I felt like no one else could see what a great, kind, funny, beautiful little boy my son is. Things are getting better now and he is integrating more with others. I still feel a sense of grief sometimes and I do blame myself. It’s anxiety provoking being a parent, even more so when your child has additional needs. It’s ok to admit that and own it.
You are doing amazing and no matter how it might not feel like you are ! You are and being present for your kids is the most important thing and that’s what will matter at the end of the day! Praying for you 🙏🏾
My 2 year old son was diagnosed with moderate to severe autism last month and though they didn’t reveal anything I didn’t know it has brought a lot of emotional rollercoasters. At the same time, I’m balancing new behaviors that are emerging everyday and trying to also focus on my 3 other children who need me while trying to also make sure my son is safe. Thank you for your story and transparency. It’s just helpful to have someone who understands.
When he was diagnosed, did the doctor give you a choice “I can diagnose this as Autism or unspecified global delay”? And ask you to choose which you one you’d like for medical insurance purposes?
The irony, of course, is that many of your post-diagnosis experiences are actually very similar to those of autistic adults (both pre- and post-diagnosis) - sleeplessness, social anxiety, isolation etc - albeit for _vastly_ different reasons (obviously).
That's good to know. I often feel bad as a later-diagnosed adult (got my diagnosis at 38), when I interact with parents of autistic kids, many of whom are likely also autistic and just weren't diagnosed as kids - some clinicians are eagle-eyed enough to spot it in parents who have gotten good at masking, others are less informed about that - not all parents of autistic kids are, of course, but soo many are - I know for sure both of mine are (they have all the major characteristics in some way), although they both say they're "too old" to look into it. I try not to be annoying or overkill with parents of autistic kids I do interact with, but I also desperately want people to know what it's like to be an autistic adult as well, only so they can be prepared for it and prepare their kids for it. I wasn't prepared. I was the precocious bookworm nerd type and my family comes from a more working class background and my parents instead pushed me hard because I was "gifted." I don't hate them for this, but in my 40's now I'm a burnt out mess. I'm working on getting better now that I know my needs. But it's tough. I love my brain, actually, I enjoy thinking the way I do, I enjoy my creativity and humor and strong sense of justice. But in order to get the best of it, the conditions around me have to be *just so,* otherwise I'm taking a long time to recover in bed, etc. Things other people consider easy, normal, and fun are extremely taxing to me. I do sometimes still choose to participate in certain things that are taxing because I want to, or want to show up for others, but I have to plan ample recovery time after. It's the one thing I wish were different about my life. I don't want autism to go away, but I want more understanding and patience from others.
Hi Tara. Thank you for all the great videos and everything you do. Especially thank you for your potty training tips. Ive followed your recommendation and got “ see my go potty app” my 4 year old autistic son learn to be fully potty train in a week. He was withholding stool. Now he goes potty whatever he needs to. It’s extraordinary. Thanks a million
The way you share your story & experiences is so helpful❤️ you are just so real and I appreciate that! It’s not easy but you show it’s possible & it’s ok to realize the pains you feel as a parent! Thank you so much!
Thank you so much for naming and articulating my overwhelmingly intense emotions. Feeling heard and validated. Thank you❤ Hope you and your family are doing well… stay safe and warm. Warm wishes for you all😊
The first 5 minutes of the video especially, resonated with me so much. I’ve genuinely felt like I’m a crazy person for getting chocked up at playgrounds, or seeing the other kids’ faces while trying to deal with a meltdown etc. and I didn’t think it was ok for me to feel that way until you said it.
I have been watching your vidoes when my son got diagnosed with Austism. Other people don't understand what is really like the struggles. Thank you for allthe advice you provide other mom's.
I don’t know if I have ever related to anybody as much as I relate to you right now. I’m still in the stage of realizing that I am isolating and you have made me realize that I need to take care of myself. My little one is also epileptic and physically delayed so it’s a hell of a journey. But my daughter is the reason. She is perfect in every way
Great, timely vlog. Thanks for speaking out about this subject. It was well done and no, you weren’t rambling! 😉. From Goldi across the pond in the Pacific Northwest. 🇺🇸
Hi, I can relate to so many issues you have mentioned. I too can't manage to be around other kids..much of this is due to my son not interacting appropriately, not talking much and kids/peoples reactions to my son. I have also withdrawn socially. We are still new on our journey. My son was diagnosed in January of this year and we are learning and being proactive. I have also put myself last as long as everyone and everything is taken care of. One feels so guilty to do things for yourself but it's something I should prioritize. Thanks for your advise and guidance.
What a lovely channel. I find most autistic families on TH-cam grind me the wrong way but I have no feelings like that here. For two parents that aren't obviously strongly autistic yourselves (or anyone) you are doing beautifully. And Dylan is a very healthy well fed young man. My family is quite dysfunctional but we are happy, I'm strongly Autistic as it's my wife's brother... And my brother.. my kids are all autistic, the youngest is on a similar path to Dylan, it's great to see how well he's doing. Inspiring.
This is a great video. We can relate 1000%! Our entire life has changed, yet we have to still be there for our 4 other kids who are not on the spectrum. Finding the "balance" is a constant challenge where the rules seem to always change! Keep up the awesome work!
I can relate. How do we deal with the "need" to be aggressive on his part? Teacher often sends emails about how he "hurts" other kids. I am also just frustrated so much by those constant emails. And I know he means well. Just need to reinforce the play without pushing, kicking etc. How do I do that? He is currently in mainstream school by the way.
Scary behavior comes from a scared nervous system. Most likely he is externalizing stress; can the teacher start observing for triggers? That empowers them, too.
You are not alone darling .I know that’s hard . I just got emotional and cried I know you have to work hard for him and sometimes feel tired .my husband and I both isolated at home too my , son really needs to go outside two times a day that for playground or playgroup or nursery also he has sleep problem , as soon as we wake up standby for him. we forget ourselves really.
I believe that getting psychological help with an expert means a lot. I have had one since the beginning of this journey. Usually they are part of the team that deal with your kids, because they are experts in what is happening to you. I think they are as important as the therapists for your child. Always ask for help.
I’ve just found your channel - I’m thinking about making videos of my experiences too. There is so, so much more to autism than the obvious. Did you know 80% of parents of kids with special needs split? We are also immigrants from the U.K. to australia so we have no family around and trying to make friends with a kiddo with ASD is almost impossible. I’m sailing down struggle street daily and I think sharing that may help someone. Thanks for your video!
Thanks for sharing your story. Our son is 2 years and 2 months. We are kind of shocked and still don’t know what to do. When did Dylan learn to speak and could interact with other children. How was his success in school and made up friendships?
I completely get everything you have said I isolated I withdraw still do getting better but feel so guilty am I not doing enough for my kids if I took time for myself I felt like I failed . I didn’t have support from family or school more told I was bad parent , it was my fault , the issues where fine went in school I went into a very dark place but since got the diagnosis people want to help bit more or try to understand. Do feel you get thrown out into the world after diagnosis left to get on with it that’s when you need the most support and help .
I wish there was an italian translation for all the mums over here and for his grandma. The book is really easy to understand without big worlds around the struggle we face everyday and how to help our kids ! Thank you so much Tara
Your so welcome . I hope the publisher will publish it in Italian it’s currently in polish so you never know. You might have to write to my publisher and ask for it 💕
Hi I in a relationship with a woman with a 7year old son thats autistic. Its been 2years i am trying to help he in not vary verble. Sings songs from youtude. Hes not eating and getting it to anything he can. I also have 2 daughter that are 50/50 withy ex. Its been really hard to help all the kids with school and play with them and to have a life aswell. Im just feeling so defeated im not shur what to do any more. He dose not listen its so hard to be patient. I have so much more to say but im dyslexic so hard to put my feeling on paper.
My 14 yr old son hasn’t been diagnosed. Actually, he was tested when he was like 3-4 and was told he wasn’t autistic. The older I got and got more Info about high functioning autism and I question if actually does have it and was just misdiagnosed. Based on what I have read He doesn’t meet all the criteria either but then in some aspects i really question it. The more thought I give , the more anxiety I get with just a thought of being actually diagnosed and my biggest fear is PEOPLE TREATING HIM DIRECTLY OR MISTREATING HIM AND IT AFFECT HIM! I shut down with just the thought! My therapist advised if he thriving without a diagnosis, do I need the actually need it? He is wonderful kid! Polite, sweet& the teachers rave about him.. When i look back, when he was tested he had a few traits that make sense and he still don’t meet criteria. He grew out of most of them and now The only thing that sparks my brain is somewhat social, mild monotone and doesn’t understand some social cues. Anyone else can in a similar situation?
Hi thanks for sharing these, could you please make video how to improve language in autism kid please, my sone is 5 years old he had speech , and communicate with basic words and few sentences but I am just concerned as he can’t tell when I ask him how was his day , or when he sick can’t tell where is the pain , please guide me please how to help him learn functional language
My son was born premature at 30 weeks and it has been really challenging since his birth..Things got settled by 2nd year of his birth and now at 3 he got diagnosed with mild asd..I feel anxious all the time..cant sleep throughout the night..Sometimes I hate myself and sometimes i hate my son..I dont know what is happening to me..Somedays I am positive and somedays I am drowning in negativity..I am too struggling a lot..dont know what future holds for my son..😢
Hi there thank you for your comment . I know I’m sorry we have been going through a bit of a learning curve with Dylan. It’s been a struggle but I will be back very soon. Thank you so much for your support and staying with us xox back soon x
Dear mam, i am really feeling so much exhausted to handle my son who is having borderline autistic features. I am getting more anger and more often i shout and beat my son for even small things. Kindly help me how to manage my anger issues mam.
Have you considered that you might be autistic? I mean no disrespect by asking. Just as an autistic person myself you set off my autism-dar in a major way. Autism is genetic so usually at least one parent also has it. It's just that people (particularly women) of our generation often went undiagnosed and learned to camouflage our traits.
one of my girls was 3 months when i told doctor my baby dont love me she said im doing great i say no you dont understand at 6 months she told me she will checvk her at 12 months
It appears Dylan has mild ASD. Curios to know what age he was talking in sentences. I have 5 yr old non verbal , hyperactive with level 3 asd. Iam check whether cord blood stem cell treatement is beneficial.
No he is quite sever actually. It comes in waves somedays he can cope with more than other day. In diagnosis now, they’re actually not giving ratings if it’s mild severe or moderate because it’s unfair on the individual because some days they can cope with more than other days. As Dylan has got older and has been very difficult to navigate the hormones and the anxiety, which means they will be classified as severe right now. Even though he went to a stage where he would’ve been considered moderate. Then started saying some words, but you couldn’t really understand him at four and five . Hope this helps
@@ComingHometoAutism Thank you. Here in Australia my kid has been diagnosed with DSM V Level 3 ASD at 3.5 years which means severe. At 1.4 yrs he spoke small words few days but then suddenly stopped. He started pointing things at 4.8 years. Symptoms rocking head, repetetive dump & fill sometimes, likes playing with water, breaks down occasionally. Still non verbal , i wonder whether he can speak in his life. Started researching cord blood stem cells for ASD based on reviews of Duke trials. However i found that most cb banks are not doing HLA matching these days. Hopefully i can find someone who went through this process.
❤❤❤ Moj engleski je loš. Izvini. Moram da kažem da si izuzetna žena, majka. Toliko si posebna i nežna. Bravo za svaki dan tvoje borbe. Imaš divnu decu. Pravo bogatstvo. Predivnu su svi- Dilan, Luka i Naja. Big kiss for you.
I can so relate with the isolation the diagnosis brings . I had to quit my job. I wasn't much of a social person. But diagnosis made me even more isolated. Felt like people around me belonged to a whole different world and I was on my own. Even my sister with whom I shared a lot just wasn't my confidant anymore as she didn't understood what it is. I couldn't share with her a lot.Not her fault , but i was so engrossed with my son that i just made a shell around us. Now most of my old friends are virtual friends only. And other autism moms. But honestly, i don't enjoy social gatherings anyways. So fine by me 😁😁.
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I could have written this.
@@shahshah4681 I was about to say the same thing
I agree with the diagnosis making me isolated from everyone. I didn't want to go to parties, or church, or anything. Seeing other kids who are not autistic makes it very hard to see.
Ugh I know. I’m crying reading all these relatable comments. Feels good that other moms feel like this, makes me not feel guilty
You have just described my life, since my child was born. We very quickly isolated ourselves from friends & family. We only told my parents & 1 close friend. Waited over 2 years for my husband to tell his family, for fear of their rejection, which happened anyway. We are from a small town & it always feels like everyone is staring & glaring. They have never raised a child with autism, yet they have so many opinions.. We realized early on, that it's far easier to go to a public place in the city, with all strangers. We can be ourselves, our child can simply be him. If people are staring or whatever, I can just blow it off.
I think I also feel guilty when admitting how exhausting every day is. I feel like I'm complaining about this little person that is my heart & soul, so we try to find the joy in each day, & love him with all my heart...even when he was ripping chunks of my hair out! Nobody understands, even some autism parents with less affected kids don't understand.
I do not have anyone that I can leave him with, so it's him & me. My husband works away from home for many months at a time, & my parents are uncomfortable watching him.
One most important thing I've learned, is that my child got over his meltdowns far faster than I did. For me, I felt like I failed & let it ruin the day. Now, I have learned to take my cues from him. Once he moves beyond a hard situation, meltdown, aggression, whatever...I have to move on too. Give him a hug & move forward with the day. My family just can't understand that. They feel he should be punished for the day, & instead, we get back on track, & go get that ice cream & giggle & have fun!
Thank you for being a part of our life! You are the one person that makes me feel less isolated. Thank you!
Your welcome xo
@W P stay strong sweets you have each other and that’s all that matters. Big big hugs from Texas and mama of a boy with autism!
We lost friends too. Slowly just stopped connecting, sad, but it seems common...
Great comment. I'm the same, depressed because of it all but I am starting to come out of it I think to being more hopeful...
I was feeling very lonely today and thought about you, I just saw you uploaded a video exactly about my struggles. Thank you so much for that.
Today while my walk to kindergarten I felt a lump in my throat, trying not to cry. There's nothing wrong in particular nowadays, just being lonely.
I don't have an energy to go for a vacation. For me, my home is the safest place when we - me and my son can rest. When we travel somewhere, I'm taking care of him 100% of the time, as I'm a single mum. And it's very tiring for me. I prefer just one-day trip and resting for the whole week afterwards.
We've got some social gatherings recently and it was exhausting. Also some doctor appointments, which makes me anxious.
And then, someone pointing out that my son is tip-toeing and it's not good for his posture. Yes I know that. I've been to specialists, but I don't have energy and money to drive and pay for therapies and exercise at home as much as we should to make things better. I'm doing a lot besides that. I'm focusing on his mind and emotions, we've been to another physiotherapist saying same thing "he's doing great mentally but he needs intense physiotherapy".
I was very sick for 2 weeks and it caused a lot of bad behaviour and emotional problems arising for 2 months, we're good finally, so people don't talk anymore how he's emotionally unstable, but about physical issues.
I'm feeling hopeless a lot, struggle with my mental health, money.
I prioritize meeting friends over other things, but there's not enough time (and energy) to do everything.
Today I got answer about our holiday with play therapy - there isn't any possibility to attend as a single mother, I would have to bring a nanny as well, so it's well out of our reach, even 4 day vacation.
I wanted to cry, because I don't have many friends left, they want to meet but I can't bring myself to travel there. I live with my son in 1-room flat and cannot host guests here. Sometimes 1 or 2 people visit for an hour and that's all.
Money is a huge issue for me, as I'm on social support (it's great I have that, but I'm not allowed to earn any money by myself), and I'm too afraid to resign from that totally and go to full time work, as my son still needs me frequently during the weekday. No family whatsoever to help me.
I have a lot on my plate and even can't afford good psychotherapy.
Trying to manage somehow, I know techniques to help myself, but still, not having emotional support is hard. And not having much time for friendships don't make it easy to find support. When I had a choice to pay for psychotherapy or pay for food, I've chosen food.
I even think from time to time, to give my son to his dad, who's in another country and always complaining he doesn't have money for child support. But I know it would harm my child so how could I do that.
Some friends are saying I should give my son to his dad for a week, but the journey itself would be tiring for us, costly and I wouldn't have peace of mind anyways.
As I'm writing it, I realize I'm doing a great job, and I should give myself more credit for that.
Doing it all by myself, with no support from anybody. I shouldn't ruminate I'm not doing enough, because I do everything I can.
My kid went from level 3 diagnosis at age 3 to level 1 now, he's having friends and doing great overall.
I've done therapies at home during pandemic for more than a year, though him to speak fully at age 4, potty trained, showed him how to play.
It's the therapist job that I've done full time for couple of years and now specialists say my son is a miracle.
As it comes to sleep, I almost didn't have any until he was 3 yrs old, and he started to sleep normally a year ago when I introduced melatonin, it's been life-changing really. He's now sleeping 10 hours at age 7, while he slept 6-7 hours until he was 6. I was desperate for something for him to sleep, because I was so sleep deprived and still I have sleep issues. But it's getting better.
All caregivers deserve huge respect
I’m sending you a huge hug. It’s hard I know and sometimes we don’t know which way to go. Even a cold shower to shock your system to make you stop thinking for 1 min can help. Breathe take one day at a time. It won’t always feel this way. You right your doing a fantastic job . Sending you a big hug x
I am 70 and my son is 41 (autism & OCD). Yes,the isolation is the most difficult part of it all. I encourage young mothers to reach out for as much help as they can get and take care of themselves physically and mentally. There is so much support available these days and your channel is a wonderful example. Sending all the struggling mums big hugs. It's a long journey but balance is the key. Self care means you will be here longer for them.
Thank you so much for sharing! I can resonate so much with everything you’ve said. Many of these feelings have resurfaced recently… for no reason in particular. My son is now older and I’m reaching a new level of grieving where he “would” have been. I feel audio for feeling this way. He’s such a sweet boy and I love the bones of him! I grieve the person I was before the diagnosis… I feel an overwhelming sadness when I look at his baby pictures. I never imagined to find myself and him in this place. It’s a club no one signs up for. 90% of the time I’m so positive and hopeful for the future. But every once in a while I find myself in this place.. that’s when it’s so wonderful to connect with other mums who understand! Thank you!
'Journey' is too soft a word to describe living with a disability or caring for someone with a disability, day to day.
It is an EXPEDITION equal to trekking to the polar regions, Mt Everest, Lord of the rings etc.
What has helped me is to connect with parents living a similar experience and having my core family and friends support base.
Let go of people who are judgemental even if they were once part of your inner circle. Sometimes strangers have been kinder than some relatives and friends.
Essentially we are freaking warriors!!!!
I withdrew from all friends really. Wife did mostly too. I haven’t spoken to my oldest, closest friends in a few years now. Too tired and can’t imagine being social again really. My son had a lot of progress this year but I’m so hyper focused on everything required, I can’t imagine going out with a friend for the day or evening. Its been so long now and I feel a lot of guilt on it and now have social anxiety which is opposite “old me.” It’s odd how so many commonalities show up in our world. :). We are very happy though. There’s ups and downs and stressors but overall we are past those early on adjustments. It is odd how at home, we barely notice any autism, but in public it is like putting up a neon sign for us. I’m too tired and it’s too late to make such a long comment. Lol. I can’t put together a proper thought. I’ll try again another time.
In just 2 weeks we will get our diagnosis, but we already know our little one is on the spectrum. And I am in tears writing this, but everything you say it’s true. It is a struggle, every day, but I am happy even if I am tired. He is my little boy and I love him more than words can say. I will fight for him, forever! Who ever reads this: you got this, you are not alone! ❤
We were there, not long ago. You're right... we're not alone!
Very sweet thank you! It was a relief to have a piece of paper finally. I’m finding out it’s not the last test either. I’m finding for just about everything each place does their own assessment. The public school for qualifying for 504 he had to do a “pupil appraisal” it’s definitely shorter than the
Actual 3 part text originally. Here our school district lets them start at 3yo
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I can’t even put into words how much this video meant to me. Just to see that my feelings are valid and can be understood 🥺
Sending you a big hug xox your not alone x
Oooh the early years were so tough. Lack of sleep absolute worst. We have twin girls on the spectrum and I don’t think we fully appreciate how hard the early years were for us. They are 8.5 now and life is so much better. But we don’t socialise. My free time from the girls is for my husband & myself (or just myself). I think for us it helps that we are both more introverted. However I can see how really social parents would struggle with the isolation. My best friend and I met years ago working with adults who have disabilities. So she’s great & very understanding about our lives. Anyway. Great video. ❤️
Thank you x
I miss your videos so much! Hope you and your family are doing well! ❤️🥰
We will be back soon xox
Is been 5 years since my son was diagnostic and 4 years from my second son sometimes feeling like I have to explain everyone what autism and just thinking about doctor appointment, dentist, and make me feel overwhelm ed and mentally exhausted I relate to you hundred percent because I stop take care of myself. I have lupus and that make things a little bit more tricky but trusting in the professional people is the best that you can do they give you ideas support groups, everything I have a wonderful teacher that honestly I think she’s been the angel in my life .
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Thank you so much for making this. I'm about to listen while doing the dishes now the kids are asleep 🤪 #mumlyf
Just last night, I woke my husband at 4am in a mess of tears in a state about our (honestly, shockingly unprofessional) SLT and how that might effect our daughter's progress. I have worked so hard for her to have so many wonderful things - a nurturing home environment, wonderful kindy, sensory swim, etc etc, but as soon as something goes awry the grief and guilt is overwhelming.
My husband is amazing (and frankly, our daughter's favourite person) but I believe Mothers carry the weight of their children's care so deeply, it is in our bones. And man those bones get tired sometimes.
Lots of love to you, thank you for helping me on my journey x
Your so welcome sending you so much love x
You have rescued me from drowning in my overwhelming pain today. I had a very bad day and you have helped me bounce back. ❤❤❤ thank you for your vulnerability Tara! All your content is amazing, but especially this one directly to us moms who carry sooooooooo much on that plate.
Oh this made my cry. I’m so happy I could help you a little bit and make you feel less alone. I’m
Sending you a huge hug ❤️ you got this xox
As always, very much here to feel like we are not alone, since sometimes it feels that way. Thanks for sharing!
I, too, feel at peace in organizing my home and it helps my mental health. Truly therapeutic to my brain🙌
Love a good clear out 🥰
You are such an amazing mother and role model. Thank you for sharing .
Here is the problem my parents when I was feeling overstimulated or just generally in a bad mood what they thought is it was just a regular tantrum and they were like trying to discipline me saying that that's bad behaviour and I just felt scared like why are you doing this to me? I'm feeling frustrated.
So you are a really great mum, in terms that you listen to your child and that you're a good parent!!🍡
And I have to agree with you tantrum is an unfair word I wouldn't say that to my child if they were having a meltdown!!💕
I relate to this so much, Tara. 5 years into our ASD journey and it can still be very hard. Thank you for sharing. ❤
You’re so welcome x
Oh Tara, how lovely is it that we come here and feel not so alone. Than you for all you do.
You are an amazing mamma.
Thanks for the hints and tips - and by gosh, do we need them. Xx
Thank you lovely x
I found a sense of grief when my son had his diagnosis. My son didn’t get invited to party’s, or have friends, and I felt angry. Angry at the world. Angry at other people. I felt like no one else could see what a great, kind, funny, beautiful little boy my son is. Things are getting better now and he is integrating more with others. I still feel a sense of grief sometimes and I do blame myself. It’s anxiety provoking being a parent, even more so when your child has additional needs. It’s ok to admit that and own it.
You are doing amazing and no matter how it might not feel like you are ! You are and being present for your kids is the most important thing and that’s what will matter at the end of the day! Praying for you 🙏🏾
My 2 year old son was diagnosed with moderate to severe autism last month and though they didn’t reveal anything I didn’t know it has brought a lot of emotional rollercoasters. At the same time, I’m balancing new behaviors that are emerging everyday and trying to also focus on my 3 other children who need me while trying to also make sure my son is safe. Thank you for your story and transparency. It’s just helpful to have someone who understands.
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When he was diagnosed, did the doctor give you a choice “I can diagnose this as Autism or unspecified global delay”? And ask you to choose which you one you’d like for medical insurance purposes?
The irony, of course, is that many of your post-diagnosis experiences are actually very similar to those of autistic adults (both pre- and post-diagnosis) - sleeplessness, social anxiety, isolation etc - albeit for _vastly_ different reasons (obviously).
That's good to know. I often feel bad as a later-diagnosed adult (got my diagnosis at 38), when I interact with parents of autistic kids, many of whom are likely also autistic and just weren't diagnosed as kids - some clinicians are eagle-eyed enough to spot it in parents who have gotten good at masking, others are less informed about that - not all parents of autistic kids are, of course, but soo many are - I know for sure both of mine are (they have all the major characteristics in some way), although they both say they're "too old" to look into it.
I try not to be annoying or overkill with parents of autistic kids I do interact with, but I also desperately want people to know what it's like to be an autistic adult as well, only so they can be prepared for it and prepare their kids for it. I wasn't prepared. I was the precocious bookworm nerd type and my family comes from a more working class background and my parents instead pushed me hard because I was "gifted." I don't hate them for this, but in my 40's now I'm a burnt out mess. I'm working on getting better now that I know my needs. But it's tough.
I love my brain, actually, I enjoy thinking the way I do, I enjoy my creativity and humor and strong sense of justice. But in order to get the best of it, the conditions around me have to be *just so,* otherwise I'm taking a long time to recover in bed, etc.
Things other people consider easy, normal, and fun are extremely taxing to me. I do sometimes still choose to participate in certain things that are taxing because I want to, or want to show up for others, but I have to plan ample recovery time after. It's the one thing I wish were different about my life. I don't want autism to go away, but I want more understanding and patience from others.
Thank you for constantly being a source of inspiration and consolation. ❤
Thank you x
Hi Tara. Thank you for all the great videos and everything you do. Especially thank you for your potty training tips. Ive followed your recommendation and got “ see my go potty app” my 4 year old autistic son learn to be fully potty train in a week. He was withholding stool. Now he goes potty whatever he needs to. It’s extraordinary. Thanks a million
You so welcome and well done with the potty training that’s great news x
The way you share your story & experiences is so helpful❤️ you are just so real and I appreciate that! It’s not easy but you show it’s possible & it’s ok to realize the pains you feel as a parent! Thank you so much!
Thank you So much for your kind words x
Thank you so much for sharing and being so honest and open… at times it felt as though you were talking directly to me 🙏🏼❤️ x
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Thank you so much for naming and articulating my overwhelmingly intense emotions. Feeling heard and validated. Thank you❤ Hope you and your family are doing well… stay safe and warm. Warm wishes for you all😊
Thank you so much for sharing this with us that’s exactly how I feel and it shows me I am not alone ❤❤
Starting my journey as a parent of an autistic child. Your video is really lifting me up. Thank you!
The first 5 minutes of the video especially, resonated with me so much. I’ve genuinely felt like I’m a crazy person for getting chocked up at playgrounds, or seeing the other kids’ faces while trying to deal with a meltdown etc. and I didn’t think it was ok for me to feel that way until you said it.
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I have been watching your vidoes when my son got diagnosed with Austism. Other people don't understand what is really like the struggles. Thank you for allthe advice you provide other mom's.
I don’t know if I have ever related to anybody as much as I relate to you right now. I’m still in the stage of realizing that I am isolating and you have made me realize that I need to take care of myself. My little one is also epileptic and physically delayed so it’s a hell of a journey. But my daughter is the reason. She is perfect in every way
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Thanks for sharing. Well done. God bless you and your family. This was helpful for our family.
this is exactly what happened to me and still struggling with it .. thank you!
Thank you for being so open! I hope everything is okay I see you didn’t post a Sunday video
Yes all is good thank you for checking in life is busy so trying to do the videos when I can xox
Great, timely vlog. Thanks for speaking out about this subject. It was well done and no, you weren’t rambling! 😉. From Goldi across the pond in the Pacific Northwest. 🇺🇸
Thank you my lovely Goldi x
Hi, I can relate to so many issues you have mentioned. I too can't manage to be around other kids..much of this is due to my son not interacting appropriately, not talking much and kids/peoples reactions to my son. I have also withdrawn socially. We are still new on our journey. My son was diagnosed in January of this year and we are learning and being proactive. I have also put myself last as long as everyone and everything is taken care of. One feels so guilty to do things for yourself but it's something I should prioritize. Thanks for your advise and guidance.
What a lovely channel. I find most autistic families on TH-cam grind me the wrong way but I have no feelings like that here. For two parents that aren't obviously strongly autistic yourselves (or anyone) you are doing beautifully. And Dylan is a very healthy well fed young man. My family is quite dysfunctional but we are happy, I'm strongly Autistic as it's my wife's brother... And my brother.. my kids are all autistic, the youngest is on a similar path to Dylan, it's great to see how well he's doing. Inspiring.
Thanks you so much
This is a great video. We can relate 1000%! Our entire life has changed, yet we have to still be there for our 4 other kids who are not on the spectrum. Finding the "balance" is a constant challenge where the rules seem to always change! Keep up the awesome work!
Thank you so much x
I recently joined a group of mothers with ASD kids. They just understand you, no need to explain. I met them personally, not on line.
I can relate. How do we deal with the "need" to be aggressive on his part? Teacher often sends emails about how he "hurts" other kids. I am also just frustrated so much by those constant emails. And I know he means well. Just need to reinforce the play without pushing, kicking etc. How do I do that? He is currently in mainstream school by the way.
Scary behavior comes from a scared nervous system. Most likely he is externalizing stress; can the teacher start observing for triggers? That empowers them, too.
You are not alone darling .I know that’s hard . I just got emotional and cried I know you have to work hard for him and sometimes feel tired .my husband and I both isolated at home too my , son really needs to go outside two times a day that for playground or playgroup or nursery also he has sleep problem , as soon as we wake up standby for him. we forget ourselves really.
This sounds exactly like me. And I look up to you so much.
Needed this video. Its like im grieving.child was diagnosed almost 1 year ago. I cry alot. I pray a lot.
My child is the pda profile. Very difficult and different from other autism profiles from my understanding.
I just want to say to all that might read these comments...there is hope!!!!
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I believe that getting psychological help with an expert means a lot. I have had one since the beginning of this journey. Usually they are part of the team that deal with your kids, because they are experts in what is happening to you. I think they are as important as the therapists for your child. Always ask for help.
I’ve just found your channel - I’m thinking about making videos of my experiences too. There is so, so much more to autism than the obvious. Did you know 80% of parents of kids with special needs split? We are also immigrants from the U.K. to australia so we have no family around and trying to make friends with a kiddo with ASD is almost impossible. I’m sailing down struggle street daily and I think sharing that may help someone. Thanks for your video!
Thanks for sharing your story. Our son is 2 years and 2 months. We are kind of shocked and still don’t know what to do. When did Dylan learn to speak and could interact with other children. How was his success in school and made up friendships?
Soooooooo relatable. Thank you for this
Your so welcome x
Thank you fir that ! That's exactly how I feel now ..Good to know I'm not the only one x
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This was really helpful, I definitely withdrew for a while when my son was bad, I'm trying to avoid doing it again but it's hard.
Thank u so much for talking about this. I can so relate with this .
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I completely get everything you have said I isolated I withdraw still do getting better but feel so guilty am I not doing enough for my kids if I took time for myself I felt like I failed . I didn’t have support from family or school more told I was bad parent , it was my fault , the issues where fine went in school I went into a very dark place but since got the diagnosis people want to help bit more or try to understand. Do feel you get thrown out into the world after diagnosis left to get on with it that’s when you need the most support and help .
It’s so important to look after yourself as well. Otherwise you can’t help your kiddos. Keep going. Sending you a big hug x
Your videos is so inspiring ❤ this gives me a lot of hope Thank you for sharing ❤
Please came back❤ .
Please tell me
Does he communicate back and forth conversion?
Just bought your book ❤️so excited to start
I hope you enjoy it xox
I wish there was an italian translation for all the mums over here and for his grandma. The book is really easy to understand without big worlds around the struggle we face everyday and how to help our kids ! Thank you so much Tara
Your so welcome . I hope the publisher will publish it in Italian it’s currently in polish so you never know. You might have to write to my publisher and ask for it 💕
13 years in and hanging on by a thread but I love that boy!! ❤❤❤
Thank you, you are an answered prayer! ❤️
Thank you so much! We will be back with new videos soon. Sending you and your little tribe so much love xox
My best wishes always there for you lady ❤
Hi I in a relationship with a woman with a 7year old son thats autistic. Its been 2years i am trying to help he in not vary verble. Sings songs from youtude. Hes not eating and getting it to anything he can. I also have 2 daughter that are 50/50 withy ex. Its been really hard to help all the kids with school and play with them and to have a life aswell. Im just feeling so defeated im not shur what to do any more. He dose not listen its so hard to be patient. I have so much more to say but im dyslexic so hard to put my feeling on paper.
i can relate my tripletsare15 months love your videos thank you
You are speaking my mind and feelings…
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I got 5 year old twins with Autism and I cried my self to sleep every night since
My 14 yr old son hasn’t been diagnosed. Actually, he was tested when he was like 3-4 and was told he wasn’t autistic.
The older I got and got more Info about high functioning autism and I question if actually does have it and was just misdiagnosed. Based on what I have read He doesn’t meet all the criteria either but then in some aspects i really question it. The more thought I give , the more anxiety I get with just a thought of being actually diagnosed and my biggest fear is PEOPLE TREATING HIM DIRECTLY OR MISTREATING HIM AND IT AFFECT HIM!
I shut down with just the thought! My therapist advised if he thriving without a diagnosis, do I need the actually need it?
He is wonderful kid! Polite, sweet& the teachers rave about him..
When i look back, when he was tested he had a few traits that make sense and he still don’t meet criteria. He grew out of most of them and now The only thing that sparks my brain is somewhat social, mild monotone and doesn’t understand some social cues.
Anyone else can in a similar situation?
Thank you, I needed this.
My life everyday you really need a support system.
Hi thanks for sharing these, could you please make video how to improve language in autism kid please, my sone is 5 years old he had speech , and communicate with basic words and few sentences but I am just concerned as he can’t tell when I ask him how was his day , or when he sick can’t tell where is the pain , please guide me please how to help him learn functional language
My son was born premature at 30 weeks and it has been really challenging since his birth..Things got settled by 2nd year of his birth and now at 3 he got diagnosed with mild asd..I feel anxious all the time..cant sleep throughout the night..Sometimes I hate myself and sometimes i hate my son..I dont know what is happening to me..Somedays I am positive and somedays I am drowning in negativity..I am too struggling a lot..dont know what future holds for my son..😢
So proud of you ❤
Thank you so much x
❤❤❤ thank you from Holland.
i have been invited for a wedding...i will not go because my child is late...i will see other children developing well...i refused to go 😞😞😞😞😞
Can you speak about who you decided to have tre children?
Hello, I want to ask everyone if they’re done or what they think about Stem Cell treatment?
The video helped ❤ thank you.
لقد مرت سنه وانا احاول التماسك رغم انني قطعت شوطا طويلا ولكن مازال عاطفيا احيانا .. شكرا لك على هذا الفيديو الجميل
Sending you so much love xox
Thank youu for this!!!!
Hi mam your son got ADHD too , was he hyper to ?? Can we use medication for ADHD ? Any major side effect
Isolation Isolation thats true
Hey mam ❤ which level of autism your son diagnosed please??
Tara you not making any more videos we are waiting?
Hi there thank you for your comment . I know I’m sorry we have been going through a bit of a learning curve with Dylan. It’s been a struggle but I will be back very soon. Thank you so much for your support and staying with us xox back soon x
Dear mam, i am really feeling so much exhausted to handle my son who is having borderline autistic features. I am getting more anger and more often i shout and beat my son for even small things. Kindly help me how to manage my anger issues mam.
Have you considered that you might be autistic? I mean no disrespect by asking. Just as an autistic person myself you set off my autism-dar in a major way. Autism is genetic so usually at least one parent also has it. It's just that people (particularly women) of our generation often went undiagnosed and learned to camouflage our traits.
one of my girls was 3 months when i told doctor my baby dont love me she said im doing great i say no you dont understand at 6 months she told me she will checvk her at 12 months
What about those of us who discover WE are autistic later in life due to the diagnosis of our children????
Yes I’m
Going to do a video on that’ as well as andrew my baby daddy got his diagnosis after recognising signs in Dylan . X
what grade is dd now?
Hi by Xavier
If u don’t remember me I was Dylan’s friend from primary
What happend to the videos?
It appears Dylan has mild ASD. Curios to know what age he was talking in sentences. I have 5 yr old non verbal , hyperactive with level 3 asd.
Iam check whether cord blood stem cell treatement is beneficial.
No he is quite sever actually. It comes in waves somedays he can cope with more than other day. In diagnosis now, they’re actually not giving ratings if it’s mild severe or moderate because it’s unfair on the individual because some days they can cope with more than other days. As Dylan has got older and has been very difficult to navigate the hormones and the anxiety, which means they will be classified as severe right now. Even though he went to a stage where he would’ve been considered moderate. Then started saying some words, but you couldn’t really understand him at four and five . Hope this helps
@@ComingHometoAutism Thank you.
Here in Australia my kid has been diagnosed with DSM V Level 3 ASD at 3.5 years which means severe. At 1.4 yrs he spoke small words few days but then suddenly stopped. He started pointing things at 4.8 years. Symptoms rocking head, repetetive dump & fill sometimes, likes playing with water, breaks down occasionally.
Still non verbal , i wonder whether he can speak in his life.
Started researching cord blood stem cells for ASD based on reviews of Duke trials.
However i found that most cb banks are not doing HLA matching these days.
Hopefully i can find someone who went through this process.
I think keep working on play therapies and speech therapy . Every journey is individual/ make sure you look after your needs as well x
❤❤❤ Moj engleski je loš. Izvini. Moram da kažem da si izuzetna žena, majka. Toliko si posebna i nežna. Bravo za svaki dan tvoje borbe. Imaš divnu decu. Pravo bogatstvo. Predivnu su svi- Dilan, Luka i Naja. Big kiss for you.
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Did Dylan self laugh or self talk before 4 years, laugh for no reason?
Yes he did .
@ComingHometoAutism is self laugh still there now?
Hi how r u♥️
I just want to say thank you so very much God bless your family.