When Isla was first diagnosed with autism, I took comfort in the fact that she was diagnosed with high functioning autism. I was told that kids that fall in this range often go on to lead successful, independent lives and that they often responded really well to therapy. So far, that has been true. What they didn’t tell me was that we would now be living in a different world that few would understand.
You have to decide if and how you tell everyone.
I’ve really struggled with this one. I feel like I have an obligation to help create autism awareness, but I also want to give our family privacy and the ability to disclose Isla’s disability as we see fit. I cringe at the thought of telling every single person we meet. I hate to give her the label, but I also want people to cut her (and me) some slack, but not so much slack that she’s coddled or treated differently. It’s a fine line to walk because we set the precedent for when she eventually decides how she tells the world, but I also want to create an environment where she’s surrounded by people who make her feel comfortable being herself.
You don’t fit in anywhere. You aren’t autistic enough for the autistic crowd, but you’re too far removed for the neurotypical crowd.
I really didn’t feel this until she was in an autism specific class. The other parents seemed to question her speech (she talks a lot, but it shouldn’t ever be confused with being conversational, which we’re still working on), her motor skills, just about everything. You wouldn’t notice Isla’s autism right away, and for that I felt judged. As if they were really asking, “Why is she here?”
Your struggles are invisible.
The challenges aren’t always outwardly seen, therefore not easily understood and often ridiculed. The little things I do to ensure consistency and predictability for her are seen as overbearing and unnecessary or even permissive because she seems fine- until she’s not. Little things that are no big deal for most kids can be meltdown inducing experiences for Isla, and once we’re at that point, there’s usually no coming back. And no, stricter discipline isn’t going to help. A swat on the butt won’t straighten her out and I assure you we have plenty of rules and expectations.
Autism will strain all your relationships. Even ones that have nothing to do with autism.
Listening to my friends’ parenting struggles gets increasingly harder as Isla’s development stalls. I want to cheer their successes, but it’s hard to ignore that little voice that wonders if I’ll get to celebrate the same things. It’s impossible to have empathy as a friend vents about her tribulations (even though they’re entirely valid and I complain about the same things with my typically developing son). The one that always hurts the most is when they complain about their kids talking too much. Isla makes noise constantly, some distinguishable as words and some not, but to have the opportunity for her to know exactly what she’s thinking or needing at any moment and to convey that to me 100% of the time would make such a dramatic difference in our days, it literally brings me to tears just to think of it. I don’t want to be a one upper, but when I spend my days working on things that they never even consciously think about teaching their child it gets really hard to stop the “Yeah, you think that is hard?!” type thoughts from rolling off your tongue. I know people don’t do it intentionally, but know your audience. I’ll be honest and say I’ve pulled back from a few friendships. It just becomes too hard when your situation isn’t fully understood or attempted to be understood and to listen to one more problem that you would trade anything to have.
I won’t even get started on what autism can do to a marriage. At the end of the day only my husband and I really know how difficult it is and that is a heavy thing to put on a marriage, not to mention isolating.
Comparisons are impossible to avoid.
Play dates, birthday parties, parks, anywhere you find neurotypical peers is no longer a chance to socialize. It’s a front row seat to The Comparison Show. There it is, front and center. All the ways my child is so similar, yet so obviously different. Can you see how this could put a strain on a friendship?
Anxiety takes on a whole new meaning.
You live life knowing the next meltdown you cannot fend off or battle that must be fought is always looming around the corner. You now spend the better part of every day doing your best to stay three steps ahead to fend it off, which works. Sometimes.
Isla’s day is like playing Jenga. Every time she uses a coping skill to navigate an experience it’s like taking a block from the bottom of the tower and precariously placing it on top. As the day goes on, the tower becomes increasingly unsteady. Sometimes I get a whole day of moving easy blocks and no one bumps the table. Other days, every block requires the greatest degree of finesse, gentle nudging and I hold my breath with every move. Not to mention, that depending on the day, we don’t always start out with a sturdy, in tact tower. I spend all day worrying what event is going to be the one that makes everything come crumbling down.
My job as her mother is to make sure I keep the tower from falling over, and you probably won’t see that because if I’m doing my job, then we don’t get to that point. Playing this game all day long is taxing, mentally and physically and it’s hard to understand because from an outsider’s perspective, you don’t even know I’m doing it. It becomes harder to relate because I start to resent that no one truly understands my daily life.
Everyone has an opinion, cure or cause.
Listen, I know they’re all well intentioned, but, please, just stop. I encourage your questions to gain understanding, but if one more person asks me if I’ve tried essential oils, I’m going to freak out. I’m not interested in your theory that my epidural caused this and I really don’t want to hear about what worked for your hairdresser’s sister’s nephew with autism. Just because my daughter has autism does not mean that I want to talk all things autism all the time. I have a vested interest in it now, sure, but the extent of my interest doesn’t go beyond advocating for my daughter and her needs. I don’t have the capacity for cures, causes and every piece of breaking research, so you don’t have to forward or tag me in every autism related thing you see. I know it’s probably your way of being supportive, but the best way to support us is to educate yourself and spread awareness.
You don’t get the option to be laissez faire.
The “ehh, she’ll be fine!” approach just doesn’t work. The behaviors Isla displays aren’t something she’ll grow out of or fix on her own in time. They need to be strategically addressed, consistently, to keep her development on track. Waiting to see if she outgrows something could end up wasting precious time and make it a harder habit to break down the road.
I have to track development and check off milestones not only for Isla, but for Nolan too to see if he’s displaying signs of autism as well.
The paperwork. OMG, the paperwork.
Every time we see a new doctor, participate in a new research study, meet with a new teacher or therapist, I fill out a checklist. Think like what you would fill out for a well child visit, but long and detailed enough to require an entire ream of paper. Each checklist asks the same thing in a different way, because God forbid two organizations use the same form or share information, and requires concrete examples of how she does each task. I’m put on the spot quite often with these types of questions and the pressure to answer thoroughly and precisely is immense, otherwise they will take what you say and twist what you say just so to the point that little things that aren’t a problem are suddenly big problems. This has lead me to tracking development and mentally checking off milestones not only for Isla, but for Nolan too to see if he’s displaying signs of autism as well.
You feel guilty for complaining, but it’s impossible to avoid.
It’s hard to operate in this gray area. Because autism is such a spectrum, it’s hard to find someone to relate to because each experience is so unique. Then to think that other people have it even harder than you do? Who are you to complain? I should feel lucky to have these problems! But then that makes me mad because this is still so effing hard that should it matter that it could be worse? Are my struggles invalid because they aren’t the worst case scenario? Do you see where this is going?
This is my life. It’s not all bad and I don’t share this for pity, but to bridge the gap of understanding. Some days it’s easier than others and none of these things bother me. Other days they all bother me simultaneously and I resent anyone with a “normal” child and how easy they have it and wonder why I have it so hard, which of course, is shortly followed by feeling guilty. The funny (/not funny) part is, Isla doesn’t care how I feel because she can’t read the social cues of my emotions, so wallowing in all of this doesn’t even do much good. Life goes on and all I can do is hope that what I’m doing is enough to make a difference for her.
You can read more about my journey as an autism mom here, here and here.
Well put, Heather! So much of what you’ve shared parallels my life as a mom to a child with Down syndrome. When Stephanie was young, there was no mention of essential oils, but we were made to feel like bad parents because we didn’t take her to Germany for live sheep cell injections! This was later found to have had no effect on children with Down syndrome…
I’m sure so much of it relates to so many different disabilities and/or parenting struggles! I know people’s hearts are in the right place. Bottom line, a little empathy goes a long way- for everyone!
This is my life for the last 20 years. It will be my life forever. The managing becomes more cyclical as they get older. Not so much easier to predict, but better. We are caught in a crazy part of the autism world. Where we either dont qualify for the help offered or we are judged selfish for utilizing it because there are others further on the spectrum. You’re doing a great job, and i promise the result will be worth it. We have quite a ways yet to go, but we’ve “come a long way baby!”
Thank you for sharing this. This my life also. We don’t have a diagnosis so it makes it harder to explain to people who don’t understand.
I’m sorry you’re struggling with this too, Mary, BUT know you aren’t alone. I don’t know that a diagnosis made anything easier for us, other than giving us a focus for our interventions and therapies. Sending lots of hugs, lady! It’s hard no matter what!
Love this read!! It is very close to home for me and my HFA. We were recently diagnosed, but I got many opinions about even going through with the process… Many people who are familiar with autism or work with my son every day encouraged it, but then there are the family members and friends that just did and still do not understand… “Everyone has an opinion, cure or cause”, “Your struggles are invisible”, “You have to decide if and how you tell everyone”… So very relateable <3
If there’s one thing thing that’s helped me it’s to know that I’m not the only one feeling these things. Hugs, mama!
Yes. Just yes, to all of it. We are in the process of diagnosis for my 3 1/2 yo son, given a tentative diagnosis of high functioning asd. And yes, he’s ‘too normal’ for most people to see his struggle, but not ‘normal’ enough to fit in. And nobody sees our struggle as parents, that this hangs over us everyday. Some days its a small cloud that just casts a shadow. Other days it is like a raging lightning storm. And the guilt. Even guilt about feeling guilty (how does that even work?)
So thankyou for writing this. I needed to read it today. And it helps to know this lonely road is.not so lonely after all.
I’m so glad you found this when you needed it most. The cloud is such a perfect analogy! And just like the weather, there is literally nothing you can do to control it or guarantee sunny days! You are most certainly not alone. It’s tough, but so are you. You can do this!
These are all the feeling I have as my son just got diagnosed in November. I have lots of friends who tell me, “well he’s not that bad.” Well, no he’s not until he is and then it’s very bad. They’ve never seen his meltdowns but man it really shows when one of those happens. Could you share what are some common things that make your daughter meltdown? We are still trying to narrow things down to better help my son. His meltdowns are more frequent when he’s tired but that seems to be the only really consistent factor. Sometimes I wonder what in the world he’s acting like that for because I don’t see what could have led up to him melting down.
Thanks,
Whitney
Hi Whitney,
Just my experience and thoughts-
My 3.5 yo son’s meltdowns are often triggered by unexpected routine changes. I try to tell him the night before what we will be doing the next day, and then give 30-60 min warning before we need to go. Spontaneity is NOT good. Even an unplanned stop at the park can result in a meltdown. And this can happen immediately or sometimes later that day, like a delayed reaction or a build up. Sometimes i think ‘wow he coped really well’ but later on when his sandwiches are the wrong shape, or the rain is ‘too loud’ or one of a million other things my poor boy falls to pieces. So I’ve learned to look at the whole day to try and work out what the real trigger has been.
If he is busy doing something and it is time to leave/do something else, we say ‘I’ll count to 20 then time to finish’ This is not a cranky ‘if i get to 3 you’re in trouble’. It is just giving him a chance to transition. Almost always when we get to 20 he cheerily jumps up and comes along.
And sometimes my son is just having a bad day- i guess we all have those. Sometimes there is no ‘why’. With a meltdown before 7am because i accidently put maple syrup on his pancake (horror!) i know it’s a good day to cancel all plans for the morning (if possible) and go outside in the garden or for a walk to ‘re-center’. Usually by lunch he will be back to his cheery self.
I hope that helps
Yes, my daughter often keeps it all together until she gets home too. It’s her safe space and where she can let it all out, which is really frustrating for me, but also flattering that I’m one of the only ones she trusts with all of that.
I don’t know how old your son is, but now that Isla is 3.5, I can tell you things are a loooot easier. As her vocabulary has grown, so has her ability to tell us what’s throwing her off, which has made a world of difference. But, before that was the case, sleep always played a big factor. She’s never been very good at sleeping and it was frustrating for us that we knew what would improve her mood and coping abilities, but we couldn’t make her do it.
Saying no was always a trigger as well. I know it looked very lenient from the outside, but “finding a way to say yes” was always a good tactic for us.
Transitions were always tough too. We really had to think like 5 steps ahead so that we could be prepared in the moment. For example, the transition from house to carseat was always a struggle so I’d open the door from the house to garage so she could slowly work her way out there and tinker with stuff in the garage while I gathered all our things. Then she was usually a little easier to get into her seat.
Honestly, each kiddo is so different. If you’re doing ABA these are things they can help you narrow down and give you tailored strategies. I know it’s all still so fresh, but I promise you it will get easier! It will take a shit ton of work on your end, but the gains and successes are magical.
Thank you for your response. My son is 4 and things have gotten better from when he was younger and as his vocabulary has town but he still does a ton of echolalia so most times I really don’t know what he’s upset about because he just repeats me. We are looking into starting a ABA preschool that’s 3 months long in addition to his developmental preschool he’s already attending.
Yes, the echolalia makes it really hard to figure out what they really mean. One great tip we got somewhere along the way is to do a “speech bubble” for them as if they were a cartoon. It takes away the confusing part of pronouns and it models how to use the language properly. You have to use the echolalia to your advantage!
Thank you! Finally, someone who really gets it! All of this sounds like I could’ve written it about my life. Feels good not to be totally alone. They are the sweetest, wonderful kids to have, but can be so challenging & confusing. If it helps, my son is now 6 and many things have continually gotten better. We still deal with all of it…the hours of Speech Therapy, the social issues, the meltdowns…but by some miracle he is totally excelling in Kindergarten-one of the top readers in his class, and isn’t behind on anything. He’s also been able to become more independent & confident, and his funny little personality is shining through more & more. Keep battling mama! Thanks for sharing your validating words!
Thank YOU for sharing! These are exactly the kind of encouraging words I need to fuel my mainstreaming dreams! This road is anything but smooth, but it’s always easier to know I’ve got other strong mamas walking with me!
Wow, this really sums things up well for my four year old, especially the jenga comparison. He does fine in a supported environment overall, but he got kicked out of his daycare when the issue of his ASD diagnosis came up, even though his special ed school offered to set them up with an assistant to help them. So tired of people treating this like a disease or something that needs to be isolated.
I’m sorry to hear about your son! I often think how much more complicated our situation would be if we had to find day care. A casual babysitter is hard enough! We parents really have to work extra hard to bridge the gap to acceptance, which is an exhausting task all in itself!
Great post!!!! My daughter is 4 and we too have grown in so many ways. The struggles are much farther and fewer in between now thank God. I can remember the days of the worst struggles and cringe. Autism can downright wear you out. I remember wondering if life was ever going to get easier but it sure has. The worrying about whether she’ll be accepted or if she is doing okay in preschool are super hard but I try not to dwell on them too much. Keep up the good work Mommas and kids! 🙂
Thank you so much for sharing! It’s nice to get perspective from someone on the other side!
My son was diagnosed at 2. First pdd – nos. As he was premature, I was ok with that. I fought for every step we took. Many people question his diagnosis. Try to change you verbiage. “John has a diagnosis of asd” not he’s autistic. I asserted myself and learned the language to use to get public schools to respect us. Stay present. But even with all that, they put him in a restraint chair without letting me know. They also wanted to isolate him in the autism class. LRE least restrictive environment. All of this was years ago. He’s going to middle school next year and I’m terrified. I cry when I think about it. I pray about it too. Stay strong.
I’m sorry you have had to walk such a rough road. Thanks for sharing your story!
Hi Heather,
Thanks so much for sharing your story. While reading your post I couldn’t help but feel like you were writin* my exact thoughts on this topic. My oldest son Logen who is 10 now is considered to have high functioning autism, woohoo! I can 100% relate to what you are feeling and experiencing day to day. If only there were more of us out here to band together and help each other out and support groups for parents with children on this end of the spectrum. I’d like to think this journey would be that much easier. Best of luck on your journey with Isla.
We’re out here 😉 We need a secret handshake or something! Thank you for your kind words!
So much truth here!! Oils, gluten free, Sonrise – It goes on and on!! My son is almost 5, diagnosed at 3.5… Sometimes he is a mirror of where he is, so last year in a preschool class with 9 other boys with autism, he looked just like the rest of the kids. The teacher fought me so hard because I wanted him moved to an integrated classroom. This year, he’s in an integrated class and he’s the only one with autism. He looks and behaves just like the rest of the kids. Except they have stuffed animals and he has a rubik’s cube! Next year, we go to “regular” kinder with supports. I’m scared, but it’s what he needs! He can count to 157 and backwards from 100. But, if someone says “Hi!” to him, he stiffens like a board.
I am so lucky that I already had a bestie who had a son with autism. So, I do have a friend who knows…
Thank you for sharing your story! I love your point about the mirror. I do notice that, but never had the words to describe it! That is also our plan for Kindergarten, so thanks for the boost of confidence that we can do it too!
Holy guacamole, you put this perfectly into words that I can’t even muster.
My munchkin (he’ll be 3 on Saturday), has sensory processing disorder, a speech/language delay, and we’re pretty dang certain he’s autistic as well (we’re on a waiting list for a psych evaluation). Everyday is chaos. Like, munchkin is losing it, mommy’s about to lose it, hubs is taking things in stride and helping where he can, our neurotypical 4-year-old who doesn’t understand what’s going on is trying to cope – It’s a wonder we get through the day with all 4 of us home lol.
Without having an official diagnosis, I, as a parent, feel absolutely terrible even mentioning what all he has going on to people on the “outside.” We barely go to the grocery store (and if we do, my anxiety is through the roof wondering if we’ll make it through without a meltdown). Family functions we can’t commit to until the day of just to see how things are going, and the time there is very limited.
I get told almost every single time I see certain family members that we don’t spank enough (which we can’t do, cause munchkin is aggressive and bangs his head on everything, hits himself in the face constantly and for every emotion – Reminds us of Susanne “Crazy Eyes” Warren from Orange is the New Black – People just don’t understand keeping noise to a low to moderate level, not making a huge deal out of him being at the family function (this usually results in us chillin’ under my grandmother’s dining room table with his weighted blanket), and then to boot we’re getting told every 5 seconds what we should be doing, what we shouldn’t be doing, and I get it, people mean well, but when you’re on the verge of a nervous breakdown a minimum of 18 hours out of 24, it puts a strain on things.
And I swear, if one more person tells me to get his ears checked regarding his speech I might snap. His doctor, the students (it’s a teaching doctors office), his weekly speech therapy through early intervention, the monthly visit for EI that oversees everything, the lady at the school board setting up his IEP and evaluations, the lady from the school board in the school district he’ll now be in (we recently moved and are having to transfer everything, fun stuff), his OT for his sensory processing disorder, Lord have mercy. Everybody and their mama has suggested checking his ears (and they have been, multiple times I might add), each time we get told they’re fine and he doesn’t have fluid in his ears affecting how he hears words, I’m almost at my wits end and we haven’t even gotten fully started on this journey lol.
From one mama hangin’ on by a thread, I appreciate the time and effort it took to post this. Keep doing an awesome job, mama!
Oh, Sara, that is so much going on! I have totally been there, and family not understanding or learning more is truly the hardest part. As if you’re not already doing everything you can. Turning 3 opened so many new doors as far as services and evaluations, so I’m hoping the same is true for you. I hope you are able to find a good support system within the various therapists. They have been the best source of strength for me because it’s so refreshing to have someone who “gets” it, no explanation needed. I hope you can find that. Keep up the good, hard work, lady!
Thank you for sharing this with world and I completely understand. My son is 10 and our journey has been different but in a lot of ways I’m sure similar. I’m trying not to be angry right now as it’s taken all this time to get him properly diagnosed because he is what they considered more aspergers. He was given a mood disorder diagnosis early and it’s been horrific for us all. We’ve been to so many doctors and not until I found this wonderful Dr. Willing to take on one more patient that she put it all into perspective. There are so many of these kids not being diagnosed properly because they don’t fit into typical characteristics. This needs to be shared.
I so agree! I have a lot of trouble with the broadness of the spectrum. There are so many different facets that I think even professionals don’t know where to place people, and that leads to struggles like yours. I’m glad you’ve found someone that has been helpful and you are confident in. That makes all the difference!
I feel you. Thank you for this, truly. I completely understand—the guilt, the anxiety, the jealousy , the optimism, the being all extra about certain things. So relatable, so appreciated.
It’s an emotional roller coaster, right? Thanks for reading!
Sure is. I have 3 kids : my almost 5-year-old daughter and 3.5 year old son are autistic; my 6-year-old daughter is neurotypical. Lately I’m finding it hard not to compare my boy to his 2-year-old cousin, who lives next door. And then I feel guilty for doing that. Your post really resonated with me. Thanks! I
Thank you for sharing your story. We are in the process of getting a formal evaluation for my 4 year old daughter. I totally understand the comments like: “Your child can speak and seems very intelligent. I believe she will outgrow a lot of this.” They don’t see how she comes home and has meltdowns after preschool because she is exhausted from sensory overload all day. They don’t see how she repeats sentences out of context in an attempt to express herself and make conversation on a regular basis. The list goes on and on. The lack of family understanding and support can be hard, because a lot of her behavior is not severe enough, (classical autism) therefore she can’t be autistic at all. She has excellent preschool teachers in whom have helped point us in the right direction toward getting a diagnosis. Some days are very normal, but other days are far from it behavior wise. On the hard days, you really realize that it is a true struggle, and your child needs that extra support. Thank you again for putting this in perspective for those who may not totally understand what “high functioning” autism is.
The jenga analogy sums up my every day! My son is 3 and we’re currently seeking diagnosis. Some days I convince myself it’s all stuff he’ll grow out of and then I get brought back down to earth with a thud. Every day is a struggle but I’m sure that the few friends I’ve shared my thoughts with think I’m exaggerating because he’s so ‘bright’ and we’ve learnt strategies to keep a lid on things most of the time. Thank you for sharing your experience. Will be back to read more another time x
I know that feeling of debating whether it’s a phase or not. I’m glad you’re seeking help/a diagnosis. Getting people on your side who see everything the way you do will make a world of difference for your family.
Hi this is the first time I have read your blog – i just sat down and googled ‘mum of daughter with high functioning autism’ at the end of one of the harder days of parenting my daughter with high functioning autism – and found this post. It was exacly what i needed to read – thanks so much for sharing. I could relate to so much of it. It’s only a month into our diagnosis of our 8 year old. And im quickly realising that while its a blessing she is high functioning, it’s also a curse. You articulated things i have been feeling but have been too tired to find the words to describe. I’m going to go read all your other posts on this now!
Thank you so much for you kind words! It means so much to me to hear that you connected with something I wrote. And I can completely relate to being too tired to sort through the feelings. It’s emotionally demanding for sure. Good luck on your journey!
To Isla’ Mum. Sounds like you’re doing a terrific job. It isn’t easy, my grandson is 3 and was diagnosed a t 21/2. He is obsessed with circles and balloons, can count and say the alphabet, he knows how to use letters better than his 7 year old sister! However his meltdowns when he wants some particular item that someone else has are an eye opener. Our sweet little boy becomes a red faced screaming demon and will hit out at anybody even his Mother, mostly because she is there for him. My daughter in law is amazing and how they cope when he’s like this, well she deserves a medal. We’re lucky with Cole because we don’t see this behavior ourselves very often being the grandparents and he can talk well, so hopefully as he gets older he will learn with us that meltdowns are not the way to go. At least this is what we understand from his doctors. All the best with Isla, it won’t be easy for you and yours but. It sounds to me that you are doing a good job. Regards Ann
Thank you so much! Good for you for recognizing the struggle your daughter in law is going through and recognizing her. So often, children can keep it together outside of the home, which makes it easy to minimize the struggles the child and the parents face.That support means the world, I’m sure!
As a high functioner I’m so glad to hear you are on her side. As without you one gets labelled “Lying Scum”.
And not wishing to belittle the effort it takes you to get through a day, after all my parents have decided bothered, however, it takes me more effort to choose a T-shirt, to be warn under a jumper.
Oh, and there is also this liquid when applied liberally helps – bourbon.
Thank you so much for writing this. You worded it so much more eloquently than I ever could. My 3.5 yo will also hold it together until he comes home. Sometimes I wish people could see what I see. I thought I was getting ok at this whole Jenga thing (fantastic analogy), until I started counting his meltdowns for a questionnaire. He has between 5 and 20+ meltdowns a day. That’s in between the constant one-directional speech he shouts. I find it incredibly stressful and taxing, yet I know I should be happy he is verbal. But it is so hard when he just wont stop, wont listen, wont share. It’s almost as if he uses his monologues to keep the world away, IYKWIM? and I feel like my younger neurotypical daughter is growing up in such strange circumstances. How old is Nolan? How is he coping?
The one directional speech is so taxing. Isla does a lot of verbal stimming, which is just as taxing. I understand the physical need for it, but omg it’s an instant headache. Nolan does ok. He’s a sensory seeker as well, so it really doesn’t bother him much. But, I don’t think having a special needs sibling has negatively effected him in anyway. If anything it will make him more empathetic. You’re doing a great job! Hang in there!
💯 yes!
Thank you so much for this. My 5 year old was diagnosed with Autism 3 weeks ago, at the same time I was offered an amazing job opportunity that involved a lot pf traveling I was so overwhelmed with everything that I had to pass on the opportunity, and it has been a tough decision, being my son so highly functional I some times think I overreacted and I could hav make it work. But honestly I didn’t want it to risk it. It’s so time consuming it requieres so much that I wanted to be able to give him everything he needs and once things were more calm, evaluate another opportunity. Reading your post has been a blessing today, reminding me that I’m not alone and specially that the struggle is real but at the end worth it.
You made the decision that you thought was best for your family at that moment, and there is not guilt in that! Life will level out, and I’m sure a new opportunity will prevent itself at just the right time. Good luck in your journey!
Thank you so much a great read. We have struggled for years and my son has finally been diagnosed with high functioning autism, a relief in a way as we can help him but a huge guilt that he has apparently been exhausted from masking his behaviour for so long and that both ourselves and the school thought it was other issues – a steep learning curve and a fabulous child that sees it as his superpower