I’ve been in a bit of a funk the past few days due to a bunch of reasons that I don’t feel like sharing with y’all… but basically I’m back in that place where I don’t feel like I’m doing enough to help my son progress.
As you’ve read recently my son has made some progress behaviorally this past year and is for the most part a happy kid. And that is huge because at this time last year started the spring/summer of rage.
But aside from that he hasn’t made any significant progress this school year and it often feels like he is light years behind most kids on the spectrum…even those on the severe end.
Ok, so we don’t have alot of the behavior issues and he is happy and he’s not “in his own world” most of the time. He can be very related and affectionate and can have some great eye contact. So we are lucky in that area. And I already listed all the ways that my grass is greener (read that post HERE) and I’ve really tried to stay positive and look at things on the bright side…but I think this Autism Awareness Month got to me…wore me down.
During April I reposted a lot of my old blog posts. And I also read way too many other stories about autism. And I think
that got to me. And even reading some of the heartwarming stories got to me and made me realize how far behind my son is.
He will be 9 years old next week. He is non verbal. He has very low receptive language. Aside from taking our hand and leading us to the tv he has no way of communicating. He still has weak fine motor skills, has trouble using utensils, has trouble dressing, his point isn’t great, he has trouble pointing to what he wants on the iPad.
I’ve said it before and I’ll say it again. He’s got the receptive & expressive language of an 18 month old and he has been there for YEARS!
But he’s happy.
But should we be doing more? Should we be running ABA trials with him at home after school each day? Should we have him following a PECS schedule at home even if he doesn’t really get it? Should we be expecting more from him?
I wrote this in an old blog post last July (called “Happiness vs Progress”) and it is still true today…
“…When Kyle thinks you are asking something of him, making him work. Even something he knows like “point to eyes”, he gets this pained look on his face and he starts breathing heavy and he will try to get out of the situation…”
So, should we be pushing him harder? And expecting more from him? Or should we just accept that we have a severely autistic kid who will make little or no progress moving forward and just thank our lucky stars that he’s so happy and well behaved right now?
One of the reasons that I’m in this funk is because at least a half a dozen people have written me in the past 3 weeks and suggested that we try the “Son-Rise” autism program with Kyle. And singing its praises. And saying its really helped their ASD kids and their relationship with their kids.
And I feel like that is the ONE thing that we haven’t tried. We’ve tried all the teaching methods, diets, and treatments. It feels like we’ve tried everything over the years and I’ve written about everything we’ve tried HERE, everything except for Son-Rise and now I feel guilty about it. (I’m so freaking tired of feeling guilty!)
So we haven’t plunked down the $4400 for me & the wife to attend the Son-Rise training. But after trying so many other therapies & treatments over the years that didn’t work and after years of trying to “work” with Kyle at home with no success I’m done trying anything drastically new… especially if it’ll cost me almost 5 grand.
So for now we don’t do much “teaching” with Kyle at home and we don’t demand much of him. He goes to school each day and we get mostly good reports in his communication notebook. The wife has him involved in a lot of after school & weekend activities (swimming 3x a week, music therapy, special needs gymnastics, etc, etc) and for the most part he enjoys them and is well behaved at these sessions but he’s not making much forward progress.
And when school and all the activities are over and we do have him home he rules the roost. He is king of the castle and we pretty much let him do what he wants as long as he’s happy & it’s not dangerous…. watching tv, eating his books, grabbing fistfuls of cheerios out of the box and wandering around the house dropping them along the way, etc, etc.
And I was really starting to be ok with this the past few months because he was so happy and we were all getting along so well. But then I keep reading about all the progress that some kids are making with this method or that program and it still drives me crazy. We’ve been in this autism world over 7 years now and the guilt continues…and it goes away for a little while, but then it comes raring back, and it doesn’t get any easier.
Should I be doing more? Or should I have done more back then? Did we stop a certain treatment or teaching method too quickly before we would see any gains? Did we pick the right school? Should we have fought for more services on his IEP last year…or 4 years ago? Would an extra speech therapy per week really be making a huge difference? If we were filthy rich and could afford the best private autism school in the world and 40 hours a week of the best aba money could buy would our kid be exactly the same as he is now? Or would he be verbal? Would he be higher functioning?
Should I be doing more?
Oh it eats at me sometimes!
I’m so freaking tired of feeling guilty…
The end….
UPDATED SEPTEMBER 15, 2012
I don’t feel guilty about not trying the Son-Rise program anymore. From what I’ve heard & read & read in your comments it seems like a great program if you need to reach your kid / enter your kid’s world. We kinda don’t have that problem with Kyle. He has good eye contact a lot of the time. He seeks our attention sometimes. He is not always in his own world. He is affectionate. And I don’t feel like I need to be indoctrinated into a new way of looking at my son. I love him. He’s a lot better behaviorally (lately) than many ASD kids who are much higher functioning.
Lately he’s just the world’s biggest & happiest 18 month old. I’ve said it before and I’ll say it avian. You know the expression “if you’ve met one kid with autism then you’ve met one kid with autism.” Well I really feel that way about Mr. Kyle. He’s really seems drastically different than almost all other ASD kids we know.
So the guilt of everything else in this post still applies but I don’t feel guilty about not trying Son-Rise anymore (although I’m sure someone will leave a comment below praising Son-Rise and I’ll feel guilty again)
🙁
The end…
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I think we all feel that way. It's something I often wonder myself. I have someone in my life that tends to question every decision we make for our son and they don't understand why we "don't show him who's in charge." I try to explain it doesn't work that way with an ASD child but it falls on deaf ears. We all have our battles and our guilt. To me though they are HERE. They are HAPPY. It could be a million times worse. So I just thank my lucky stars because I know there are plenty of parents out there that have lost a child and they would love to be in our shoes and have our worries. So when there are bad days and I want to run and lock myself in the bathroom, I remind myself of that. LOL. Hang in there!
~N~
Well said!!!
There comes a point where you have to let go of the guilt. It doesn't help you or your son. It sounds to me like you're already doing plenty; there's nothing wrong with giving him time to just be a happy kid, as well.
Dear Autism Daddy,
You can guilt yourself to death and it won't cure your son. Been there done that! Yes we have tried many many things.......... some have helped some have not. And yes we will keep trying...... It's what we do! You never know what is going to "click" with your child. I do understand how you feel. I really am happy for the parents of the children who have "evolved"...."been cured"....."improved by leaps and bounds" but...... I'm also tired of the snake oil salesman trying to make money off of my kid! Have you done enough for your kid? In your heart you know you have! Stop beating yourself up! We are but human my virtual friend......... Look at your kid....catch him smiling when he doesn't know you're watching.... catch that moment of wonder in their eyes.... though fleeting it may be. And those break throughs..... even rarer.... are the most precious. Step outside your life and see yourself.... and the wonderful things you HAVE done for your child.... and keep on keeping on...... :-)
Beautifully stated.
Yes this is beautifully stated!!!
Dear Autism Daddy, Please stop feeling guilty...It serves no purpose and you and the wife have no reason to feel guilty. Kyle is happy...That is the most important thing...If you had pushed him; would he still be happy? Probably not. You both do so much with him. If he was ready to learn what the others programs have to offer, I think you would see that in him...I know what you mean about how it feels like his symptons are worse than others...It actually feels like I am reading about my grandson, Noah when I read your posts. He is at exactly the same level as Kyle in every way...I don't believe any of the programs are going to spark anything in him that will last. I still have hope that one day showing what he knows will come easy to him like the autistic girl who sat down at a computer and started speaking through it for the first time...I think if you have tools around the house, when he is ready that day will come. All kids are different and I think a parent/grandparent knows when and what to push and when and what to back away from to best fit each child. You're doing a great job! Don't let anybody make you feel otherwise!
There comes a time when u realize that a happy, healthy child is really the most important, autistic or not, it should be every parents hope for their child.
I understad that fucking feeling called guilt, sometimes I feel like I'm the worst mother for my kids,but between my almost 3 years old asd son and also the 21 MONTH old twins and with NO help other than the 20 minutes from my husband only when he comes early, (my mother lives 3 hrs from me,and the rest of my fam and friends in oTher country) Im feeling exhausted,overwhelmed, and I don't have time to teach him,playing with him,be a good mother,I take hime to speach and ot 3 times per week but I feel like I'm not doing enough at home,I'm always complaining about EVERYTHING. But please let me tell u that ur blog and histories made and make me smile,cry,think. U are a GREAT dad (I Fight with my husband bcause he think that our boy is just a brat,and he doesn't involve that much in this process)so I really ADMIRE u,keep walking :)
I think we can all relate on some level. I go in waves all the time. I am one of those people that talked about Son Rise on here. It took me 2 years (w/ lots of guilt) to get the courage up to leave my family and go. I knew in my heart it was going to be a great experience based on the materials and DVD's I had. I liked their approach. I'm certain you'll benefit from this which in turn will benefit Kyle. A large part of Son Rise is about you. This therapy is the first one we've done that felt good, natural and fun... not forced. I'm certainly not here to make you feel guilty or preach Son Rise. I just want to share what a profound impact Son Rise has made on me, my son (turning 8 next week) and my entire family. Thanks for sharing and good luck.
My son is 7 and he is very much like your son. Progress for my son is SLOW, but there is progress. He has language, a few words. Some of his words are inappropriate, but he uses them appropriately. I've read you're blog and facebook page for a while now and I feel like you're my brother from another mother. I also have days, weeks, months of feeling like I should be doing more, but I don't know what to do exactly.
Kelly
I hear you, I really do. After school? Our youngn doesnt do anything extra. He watches dvd's, he plays with his toys, he may relate to us and ask for tickles etc But mostly? He just does his thing. The only thing we do is stop him making demands and 'ruling the roost' because he did this for years with his grandparents and when he came to live with us full time I realised that he had had no boundaries. So, slowly over time,i introduced these to him. I took him as the child he is and treated him as such. Sure, he has autism and he is on the low functioning end BUT he is also a seven year old boy that thought that everyone's tasks were to cater to him. With another child on the way we needed to make sure that he got an idea that sometimes we were going to say no.. And that's all we do. We dont even do what you gyus do: No extra therapies, no after school classes nothing...
I often wonder if we could be doing more but we are doing all we can as his parent to parent him and sometimes even that is exhausting..
Dad, You're doing fine. I still ask this question and I have one who is 18 and one who is 14. My 14 year old is more impaired. If you're open to hearing supplement suggestions, I can tell you anything that helps that weak muscle tone, helps the mind. They are completely inseperable as I've learned over the years. First, I'd suggest d-ribose and NADH. On the internet search d-ribose and the university of Arizona and the success these were with ASD kids. My daughter could tolerate 1/2 tsp/per day. However, the greatest tip anyone ever gave me was to give her high EPA fish oil, at leat 800mg per day.I use Nordic Naturals, but any high quality fish oil that is high in EPA will work. I've tried fish oils in the past, but the high EPA did wonders. She talks a lot more now, but it's more than just talking. It was lifechanging for us. I'm an old hat at this, back when the "A" word couldn't be found at all and teachers blamed my husband's and my parenting (we were great parents!). I just hope to share some things I've learned along the way and hope it saves you time. My friend, try the high EPA if you never do anything else.I had tried other fish oils when my girls were younger and didn't get what all the "hubbub" was about until that dear friend told me to target that specific EPA fish oil. Most of all, you sound like an incredibly involved dad, which is more than most kids have. Blaming yourself is a waste of time. I indulged in this for many years. Sometimes, it still revisits me, but I've learned to channel it in the good things I've done for my girls. When I ask myself, if anyone else had raise them, where would they be? Then the answer and the feeling is so crystal clear and honest. I am great for my kids. I, who love them more than they will ever know.
Prior to his ASD diagnosis, my son was just language delayed. He stopped pointing and imitating sounds at about a year. When we first started therapy, he was 17 months old. He started talking again 2 weeks after taking Nordic Naturals. He was still delayed of course. Someone explained that it reduced inflammation because it balanced out the 6's and 3's. I don't know why it worked it just did. We noticed that if he missed 2 days he started going backwards. We don't notice it at much now but, he still takes it 95% of the time. I would rec. trying it as well.