We started off this summer with very high hopes and a fresh outlook on life. My friend of over 12 years was moving out to Colorado from California to help us with starting our self-sustaining farm. For the past 8 years or so, we have been dreaming of getting this started, but we have been either too busy supporting the family financially or with taking care of the kid’s needs. To do both of these we needed to be living (at the least) 100 miles away from our property. So when my friend said she would come out, live on the property and get the work started, I thought this was an ideal opportunity, and funny enough, a chance for a less isolated life.
Things often don’t go as smoothly as you would expect, however.
It proved too much for her and her family to live on a piece of land (in the middle of nowhere) that had been all but forgotten for the last 5 years and she decided to stay in my home with her two grown kids and five large dogs. I was foolishly ok with this. I mean, how much chaos could this cause in my home? The home in which I live with my two Autistic children and my husband. Oh did I mention we live in a two bedroom home?
Let’s just say, this was doomed from the beginning.
I think that even if my kids were neuro-typical, it was only a matter of time before there would be some sort of explosion after which everyone would kiss and make up. The only difference is that I am an ASD Mom. You seriously don’t mess with ASD Moms, especially a seasoned ASD Mom.
My kids were both diagnosed at age three, and are now ten and nine. I have many battle wounds and other various bits of shrap metal under my skin. I’ve had family members and other NT mom’s try to tell me how to better parent my kids. There have been doctors, people shopping at the market and bus drivers suggest to me that if my kids can’t behave in public like “normal” kids, I should keep them at home. I’ve had every decision I’ve ever made scrutinized by every kind of person imaginable.
All I can say is: I AM DONE!
I am done trying to justify why I choose what I choose. I have imagined every other possible alternative to all of our issues and have made my choices accordingly. Yes my stress is still there. Yes I sometimes take an easy way out of a challenging situation, and in doing so I always feel doubt that I’ve made the right decision. But these decisions are mine to make, no one else’s. I know better than anyone where our breaking point is located.
So when my choices were scrutinized and seemingly attacked on the day in question, I had no problem letting go of the friendship. I didn’t even have the energy to fight to keep the relationship. This was just one battle not worth fighting as far as I was concerned, and my family came first, not my own need to be understood.
They say that parents of special needs kids possess a lot of the same symptoms as those with PTSD. I can really understand why. When a veteran comes home from battle, he often feels like no one truly understands what he is going through, and that’s how parent’s of children with Autism feel too. Sufferers of PTSD feel isolated from their friends and family because they know that no matter what they say or do, these people cannot imagine what they are living through. Their friends and families cannot conceive the fact that what their loved one has experienced, has changed them forever.
So now I ask this community a favor. I know some of you have your own networks and blogs. If y’all would indulge me and share this post on your own pages, I’d be very appreciative. I would like to do an informal survey as to just how prominent the feeling of isolation is to Parents of children with ASD or Aspergers.
So the questions are:
- Do you feel isolated from friends and family and/or have you lost touch with the same since the dx?
- Are you finding yourself avoiding answering questions from family and friends because you feel they won’t understand your point of view?
- Do you go out into the community and if/when you do, do you take kids or take turns with your spouse? Do you even have the option of taking turns with your spouse? (In some cases the spouse’s lack of cooperation is contributing to your stress and isolation)
- When was the last time you spent quality time with your spouse OUT ALONE?
- When was the last time you spent time alone? (either out in the community or at home)
In some cases, one of the contributing factors to the parent’s symptoms of PTSD is the feeling of being held hostage by ASD and the challenges that it brings to the family dynamics. Now don’t get me wrong. I am in no way saying you are suffering at the hands of your children or spouse, but by the emotional challenges that come with ASD.
So, you may ask, how do we remedy this for ourselves?
It has been my experience (and I only recently discovered this myself) that finding a support system that truly “Gets It” is the best medicine. Some of you already know that there is a slew of bloggers and followers that commiserate together as a community online. Others prefer meeting ASD parents in person. So join or start your own meet-up groups or community support groups. Whatever is your cup of tea, I suggest you go ahead and jump right in. The water is more
by Katherine Goodsell M.ED
Katherine Goodsell M.ED is the mother of two amazing children on the Autism Spectrum. Her children were the catalyst that started her journey down the road of Early Child Development and Education, Developmental Disabilities and Autism Spectrum Disorders Advocacy.In a 25 year span, Katherine is proven as an effective and culturally sensitive Life Coach; a capable director of resources and designer of Behavior plans and individualized educational plans (IEP) for children with developmental delays.
I’m so tired all I can say is I have two Autistic girls, twins, myself. It’s really hard to keep up with everything it entails. I won’t go into the details. I’m at the end of my rope…SOS god please help. I have my own health issues. But, it’s a struggle to go one each day. Amen. God bless all you mommy warriors!!! I send you any love, strength and courage I have left inside of me to carry on.
I’ve been reading some of the comments since I posted. It looks like some of you are in the beginning stages of diagnosis and therapies etc. . .
I experienced that as well. We had OT for sensory integration, speech therapy, bladder training problems, encopresis, GURD, IEP meetings, psychiatrists, medication trials, and that is only the beginning. He would freak out during any transition, ignored others, couldn’t have a reciprocal conversation, melted down at school multiple times DAILY (I taught at the same school so I got to hear them – lovely), couldn’t play on a team, chewed on everything, needed a one-on-one helper at church, and destroyed every attempt at friendship. What a long, horrible road it all was. The first time he had a real conversation with someone was the day he started taking Ritalin at age 6. The best books we found through the years were Transforming the Difficult Child, Chaos to Calm, and more recently The Total Transformation Program. When he was 13 we had to introduce a medication for aggression. That stopped it pretty quickly. Currently he is 15 and needs a 504 plan at school (no longer needs IEP), is the senior patrol leader at boy scouts, has one friend (kind of), is able to attend a week long summer camp for typical kids, performs all of his personal hygiene, can do all household chores independently, does his own laundry, cooks simple meals, and may be taking drivers ed this summer – YIKES! We are working on independence with medication, moderation with food, study skills, and time management. It still feels overwhelming, and we have had to be persistent and even hard on him to make change happen.
Thank you for letting me share. I hope some of this might be helpful for those who are a few steps before me on the journey!
1. I do feel isolated from family and friends. Family because they live in another state and my son does not do well talking on the phone. I see how close my mother is to my sister’s kids and I think, “It’s a good thing we moved. My mom would not have been able to handle spending time with my son. The feelings of rejection and other-ness would have been more profound if we lived close by.” I also believe that if he was around cousins on a regular basis that there would have been a lot of pain as a result. Seeing the annoyance and disgust in the eyes of others when they have to spend prolonged amounts of time with my son is like a knife in the heart. I feel isolated from friends because by the time my child is in bed, the last thing I want to do is socialize. I want to escape the world in a book. We are also isolated because typically my friends would have had children who would play with my children or my son would have friends whose parents would become my friends. This is obviously no possible. There have been no sports involvement, no clubs, no groups of any kind that a typical family would be involved in. I have tried to develop friendships, but when we hang out together my son required so much coaching and disaster control that I could hardly carry on a conversation. We gave up on that a long time ago.
2. I feel like my mother and in-laws understand how hard I am working and how exhausting it is because they have both kept my son at various times. They know what he is like and they are all very supportive and encouraging. They say that I am doing a great job with him.
3. I do go out into the community, but most of the time I swap out with my husband. For quite a few years, though, I felt like the chaos that I came home to wasn’t worth the time away. My husband has ADD, so a child who needs constant attention and structure . . . HA! Like that will turn out well! Then when I came home and put everything back together again, I had an upset husband who needed to “process” his frustrated feelings about parenting. Lord have mercy! That is hardly worth the time away. Usually I would go sip a latte and grocery shop after bedtime. That was my little vacation.
4. The last time I had quality time with my husband has been quite frequent lately. Our son is 15 now and we feel comfortable leaving him a home by himself for a few hours at a time. This has been UNBELIEVABLY helpful! Thank God we made it to this point. Now the goal is that he will leave my house someday. We’ll see. . . .
5. The last time I spent alone was yesterday evening. I took my dog for a nice long walk in the neighborhood while my son . . . actually my son! . . . washed all the dinner dishes. He did not volunteer – this was one of the “making amends” jobs that he earned by not taking his pills first thing in the morning and thus inflicting his hyperactive self on all of us for at least an hour when we were trying to leave to take my husband to work and get to a doctor’s appointment on time. Phew!
I feel this isolation and hopelessness daily, even on the good days! My family is only there to share in holidays and the “good times”, but never offer assistance when they see me struggling! Same with friends. They don’t even try. I get jealous reading stories of others with children with ASD who have family that gives them breaks or help in anyway. I, completely, agree that I have PTSD and when she puts couple that with severe depression and no help, it’s a recipe for disaster. Not to mention, the government offers NO help either. Who will take care of my kids when I’m gone? Sadly, I know they will be warehoused in a terrible facility, which, further adds to my depression.
Sad and lonely mom of 6 with twin ASD boys
I could not have read this at a better time. I’ve known my son has been different since about 5 months of age. He is now 27 months. I voiced a few of my concerns to his pediatrician when he was 22 months. We start our 2nd week of speech therapy & OT this week. They do not diagnosis on their end. He will see a behavioral and/or pediatric psychologist in the near future for a definitive diagnosis. As you & many other moms out there know, you just feel it in your heart/gut what it probably is. I believe in my heart (my achy, hurting heart yet with so much love & proactivity I can offer) that he is autistic. ASD. I want to find a support group bc I am so overwhelmed & isolated (almost for 2 years now). Thanks for sharing your story.
Howdy! I’m at work browsing your blog from my new iphone!
Just wanted to say I love reading your blog and look forward to all your
posts! Carry on the excellent work!
Thank you for your comment! We will continue to add content and try and keep it fresh and usable information.
Thank you for the kind words and encouragement. I hope you read my current piece,
https://aspergers101.mystagingwebsite.com/wants-normal-kids-anyway/
Thanks again,
Katherine Goodsell M.ED