Accepting life as it is

We switched doctor’s offices not long ago. The young pediatrician taking our information asked the typical questions… date of last eye exam, last dentist appointment, do we eat healthy, balanced meals at home?

Then we reached the “developmental history” part of our conversation. We discussed autism and she began questioning our current therapy protocol. Occupational therapy? Physical therapy? Speech?

As I answered “no” to every single question, explaining the only special services my daughter still receives in these areas are during her school day, I could see the doctor try to mask her expression.

I’m sure in her years of medical training she was taught that something should be done about each and every issue presented in her office. Delayed speech and poor motor skills should be corrected with therapy and social skill difficulties should be trained away.

But in my years of training as the parent of a daughter with autism, I have decided that I am her expert. I am the one to decide when enough is enough, when it’s time for life to not revolve around therapy appointments anymore.

There was absolutely a day when my mind was spinning with getting her to the best doctors and therapists and finding a way to cart her to occupational therapy then speech therapy, squeezing in an appointment with a vision therapist on our way to a social skills group. But we are not in that place any more. Part of our change in lifestyle came with the passing of time and the accepting of what things can change and what things will not. The rest comes from a change of heart as I realized my daughter probably wanted to go to one more doctors appointment just as much as I did.

I informed our new doctor that there would be no more days of therapy. We would be visiting her for colds and flus and school physicals but we wouldn’t need any help meeting developmental milestones. We would mostly likely be sitting in our current place on her chart for years to come. Progress is now a bonus in our life, not a necessity.

I think this may be the last phase of acceptance of an autism diagnosis that no one tells you about. The one where you look at your almost grown up child, remember how far she has come and smile at how hard she has worked to get there.

About Jessica

Jessica is a 30-something mom to five, four in her arms and one in her heart. On any given day you will find her taxi-ing a teenager, mopping up the latest "art project" and trying to remember when she turned the crock pot on… all the while, looking for the closest Starbucks drive thru. Jessica Watson can also be found at her personal blog Four Plus an Angel, on twitter (@jessbwatson) and on Pinterest.

19 thoughts on “Accepting life as it is

  1. I think I agree. We’re still working, but I see that milestone in our future. There are only so many yearly “make a circle with a crayon” goals you can miss before you say…so she can’t make a circle…so what?

    • Exactly, Ashlyn has one more year of high school and when I explain in her IEPs that I am more worried about her happiness than her academic goals sometimes I get looked at like I just grew a third eye but I’m good with that.

  2. I agree fully. We got to that point this past year- there comes a time when the quality of life determines that you have to allow your child to LIVE. Our son was so stacked with therapy it felt like he never had time to learn to be a kid. Not that we aren’t grateful for all his hard work and the wonderful therapists we were blessed to know in his journey. However when the goals became “makes letters from top to bottom instead of bottom to top” when his writing was legible and let’s face it as long as the kid can type I think he will manage just fine in the world, it simply wasn’t worth the time and tears spent. Sometimes the professionals goals and our goals are vastly different, I don’t want my son to stop stimming- it makes him happy, so once we accomplished HIS goal of being able to not stim for a movie/church service/ etc or more accurately, adjust the stims then to be appropriate we were happy -goal accomplished. It is an extremely important milestone congratulations for you and your family for crossing it.

    • I totally understand your point Tia and agree, I don’t think our kids need to do everything the way that others have decided they need to do them. So glad you have reached a good point too.

  3. Jessica – you always have a way of putting this stage of autism into words for me! We spend years and thousands of dollars taking the boys to Speech, OT, ABA, , Rec Therapy, Social Skills groups and specialists. Just recently (at 14) I have started to give myself permission to be done with that need to try everything. Yes – the caregiver still works on the speech cards after school and we still run a few behavior programs but I want our home to feel less like a clinic and more like a home. I have been struggling with a lot of guilt over that decision. Thank you for sharing!

  4. A really interesting post, not many people talk about the fact that therapy itself has stages so I’m really glad that you did. After many years we also decided enough with the appointments. Last year I found myself in the ironic position of not being able to receive government assistance because my sons had no current therapy provider or health professional who could vouch for their needs. I was told that I’d need to go through assessment all over again, twelve years down the road from our initial diagnosis. That’s insane. I replied that I do have an expert’s estimation of their needs – mine – and that not attending therapy doesn’t mean we don’t still need support. Needless to say, we didn’t get the assistance and now we struggle in no man’s land. Thanks for writing this, Jessica.

  5. I really like your perspective. The past year I have purposely stepped back as well. My 11 year old daughter with high functioning autism has been through so many Dr’s appts, tutoring, behaviour interventions, social skills groups. I’m keeping it simple this year. A tutor comes to our house and I have a behaviour consultant that visits to help with dealings at home.
    I no longer have to drag my younger son along to all of these appts as well. My daughter and son are happier not having to deal with the stress of going out the door all the time. My stress is down, I’m a happier and a better mom to my kids.
    I always felt overwhelmed and there could never be enough to help my daughter. Now I’ve realized we have to slow down and enjoy where we are at. We are trying to do more mainstream activities that develop physical fitness and independence. Ones that don’t revolve around an ASD dx.

    • That’s exactly what we did. We started looking for ways to find mainstreaming opportunities and not focus so much on therapy and it helped to make everyone much happier.

  6. What a lovely transition into acceptance and appreciation for who your child is, the growth and learning that she’s already moved through, and the importance of what your relationship can be NOW. As is.

    I do not have a child with autism. I have a child with severe life-threatening food allergies. Some of this I can relate to… the push for finding the “cure” or right next step, or the cause. And ultimately it is those things that stress my son’s nervous system to no end, because it reminds him that he is different–and when he’s forced to endure yet another doctor’s appointment or test, he is not able to simply yield into being a child–the child that he is, with the issues that he has.

    I honor your process in this journey and appreciate the reminder that each of our children are so very different and it is a disservice to them when we attempt to fit them into our limited view of what is “normal” and okay.

    Thank you!

  7. Pingback: Why I'm not a craft blogger

  8. Jess – you always have a way with words that I can relate to. My daughter is 5 now and we are in that whirlwind of endless therapies – I hope I can reach this level of comfort some day. While no two kids are alike, I take inspiration in everything you write about Ashlyn – like a small glimpse into the future for us. Thank you.

  9. I am not quite where you are at, although I do hear you. My son doesn’t do much therapy any more and I am fairly positive that it will fade away as it has done with you. One thing that I will continue doing though is being an RDI parent, as it helps me personally to parent my son. I am so glad to find another parent with a teenager. :)

    • I loved doing RDI as my daughter was growing up and I think I still use it in many ways for everyday parenting strategies. I agree with you, it is such a helpful change of perspective.

Leave a Reply

Your email address will not be published. Required fields are marked *