My younger brother is getting married this weekend. Tim and Jenna make an amazing couple and we welcome Jenna to the family with open arms.
Lizze and I are both so happy for them and support them completely.
Sadly however, we will be unable attend the wedding. Things for my immediate family – Lizze, Elliott, Emmett, Gavin and myself- are not going so well.
Lizze is in the worst place she’s been in since her whole health crisis began many years ago. There is absolutely no way she could physically handle going to the wedding. The lights, smells and noise would simply be to much for her.
Gavin doesn’t live with us anymore and Elliott and Emmett are already struggling enough right now without being overstimulated by everything they would be experiencing there.
Honestly, Lizze and I barely barely surviving without them being overstimulated.
I’m not comfortable leaving Lizze with the boys, just so I could go. It would be unfair to Lizze and the boys.
I’ve made this statement a few times in the past but I feel I should say this again. The Lost and Tired family is in survival mode.
What does survival mode mean?
Basically, we are functioning on instinct. We don’t look to the future or make plans because our main goal it to simply survive everything we are living through. Many times we live from minute to minute or second to second.
I know that many of you understand what I’m talking about.
It’s extremely difficult for me to help people to understand just how bad things are for us right now. I don’t think that you can truly appreciate this unless you’ve lived it yourself.
Right now, my only priority is hold my crumbling family together. I feel like we’ve already lost Gavin and with Lizze’s health continuing to worsen and Emmett continuing to regress, I honestly can’t worry about anything else. Poor Elliott is an emotional mess and needs all the calm peaceful experiences we can give him.
As Lizze and I became more and more aware of what special needs parenting entails, we realized that making plans was a luxury we may never have.
Anytime we try and make plans, something always comes up and we can’t make it. People are inevitably disappointed and we feel guilty. We don’t need anymore guilt in our lives, we just had to move our 12 year old son out of our house, trust me, we already have more than our share as it is.
I wish there was a way that I could allow people to walk a mile in my shoes. I think that’s the only way they will ever understand.
My family empathizes with us but still can’t truly appreciate the pain, guilt and utter exhaustion we live through, every minute of every day.
To them, they don’t really see a reason that I can’t make it to the wedding. They mean well, they truly do. It just that becomes more and more clear that I’m not explaining our situation well enough.
I think that when I not only became a parent, but a special needs parent, my priorities shifted and became more narrowly focused. At the end of the day, I have to do what’s best for my family, even at the risk of upsetting others. The wellbeing of Lizze and the boys are my only priority and I don’t need to justify or even qualify that to anyone.
I wish that there was a better way of doing this but unfortunately, there’s isn’t.
At least for now.
On my immediate side of the family, the only person that ever really reads my blog is my mother. On Lizze’s side of the family, it’s basically her mother as well.
I have feeling like we are disappointing everyone. I just can’t afford to worry about that anymore.
Do any of you experience anything similar? How do you handle it, what do you say?
@lostandtired I know where you are because I am in the same place. There is a theory (by Elisabeth Kubler-Ross) of how humans react to catastrophic events such as a death or a massive change in life situation–grief or mourning she describes as having 5 stages that supposedly everyone goes through: denial, anger, bargaining, depression, and acceptance. But the parents of special needs children (to my experience and anecdotal evidence from other parents) never get through the 5 stages. SN parents are frozen in one stage or another–often anger or depression. We are too busy "dancing in place" to accomplish the absolute essential functions for each day. We go through day after day just trying to keep our heads above water in the process of living and caring for children with special needs. I have calendars that I keep from year to year (so I have them as reference for questions from doctors or therapists) that entire months have every single day scheduled with multiple appointments to meet the needs of my children. So I stay frozen in depression and pain; I stay frozen by the massive requirements of parenting and caring for my children. One has been on chemo for 7 years. Two have high functioning autism. Four have ADHD. All five have neurological problems, osteoporosis, OCD, and some form of mental illness. One has Tourette's. So I dance and dance and keep the household going. But like you, I find it almost impossible to cope and then we retreat to survival mode. We cut out all appointments that are not absolutely essential. I go from cooking a full supper every night to cooking once or twice a week and serving quesadillas, or sandwiches, or soup on the other nights, And the worst is that no one understands unless they live a similar life. My family hasn't a clue! My mother is wrapped up in living a fantasy and tells anyone who will listen that none of my children have any problems other than me.
But still, I am doing all I can to make life better for my children, helping them to function in the world, helping them to find joy in their lives.
So don't worry about who is "upset" that you don't make it to all or any of the events other people think you must attend. Stay true to your family and to the goals you have for your family–they are the only ones who really matter!
There are several ways to do this, so just figure out the best way to adjust it to your situation.
Next time you're trying to describe the difficulties of your days, tell the person to imagine spending 1 hour trying to speak without using a certain word or phrase (i.e., "the", "and", "it", etc.) and for each time the word/phrase is used, they have to pay $10. Also, the person would have to say at least one sentence every 20 seconds or pay $20. Tell that person that after a few minutes (and the loss of some money) you would begin to alter your speech and think about everything you said and when. If that challenge was to continue every day while that person was awake (which includes being woken up in the middle of the night or staying up 24 hours because of health issues), then you can point out that person would begin to struggle with planning things for more than a day because of low funds and having to use more energy to think before speaking and interacting with others.
Then you can point out to someone that your life is about doing that on several levels (financial, physical, emotional).
I may not have explained this well enough, but it's harder to type out all the details than it is to verbalize the idea to others. Let me know if you want me to clarify my point further.
@anansison can I ask you how you always have such amazing insight? That was really well said, as usual.
@lostandtired I have a background in working with people with disabilities and mental health in different states, so i've seen the variety of services, behaviors, philosophies, etc. i've learned to listen to people and then imagine what i would honestly do if it was me, which I think most of us do not.
I started to read your blog a few weeks ago and I find myself coming back every day.
My son, Austin, (9, Asperger’s) does.not.sleep, hates most food, has frequent meltdowns, and cannot be left alone in any room of this house that he has lived in all his life due to debilitating anxiety. He is the youngest of 5. At my best I am always in a fog; the chronic haze that doesn’t lift. I struggle to find words, my memory short circuits, and to say that I’m easily frustrated is an understatement. We are not financially stable.
My brother- in-law got married 2 weekends ago. My husband was the best man. I didn’t go, I stayed home with Austin. Why? Because he needed me to and I needed to. Stay with my boy. What you said. I wish my brother-in-law and his wife the very best, I do. It is what I can do – it is all I can do – wish them the best. I have a finite amount of time, energy, and not a whole lot of happy right now. I wish I could be a person who can celebrate at a wedding and in good company but I’m not in that space for now. I’m here, in this space and with this boy and wild horses couldn’t drag me away from him. I am exhausted, broke, and isolated. Seriously, not many people get this. But I think you and Lizze do, you know this space. I hear you.
My in-laws think I am standoffish, unfriendly, helpicopter-y hover mother, etc. It makes me sad that people don’t “get” me/my situation. It’s lonely. But, and this is much easier said than done, I have to put how they feel absolutely behind what is best for my boy. They are disappointed and I am letting them down. But they are the big people and they will have to find a way to either understand or not. I don’t have the energy left to convince them. People are often shocked (and say so, sigh) at how exhausted I look.
But honestly, at the end of the day I can look at my kid and say with 100% confidence that I am all in and I have done my very best to take care of him. And tomorrow I will do it again – for every tomorrow he needs me.
You guys are strong and fierce. I know you’re tired. Your children are so very lucky. You’re doing a great job, even stuck in survive. I never feel like I am but then I read your blog and I know we all are doing our best. I hope things get better soon.
@MichelleDecker let me just say this. I haveaabsolutely nothing but respect for you. I literally got goosebumps reading this. @fibromamaby3
@lostandtired @MichelleDecker @fibromamaby3
I feel the same about you when I read your blogs. I am amazed every day by your complete devotion to each other and to your kids. Your blogs helps me more than I can tell you.
You are doing the very best you can for your family and that's whats important. Many people don't understand what its like to be a special needs parent. They have never experienced life as you and Lizzie have, so understandably they don't have a clue. I have 3 grandsons with autism and although I understand more than most, I have never walked in my daugher-in-law's shoes or my son's shoes or yours or Lizzie's shoes. I am still learning and the more I see, the more I understand the difficult decisions that have to be made so many times in a single day. When my grandchildren were first diagnosed, I read and I researched and I cried and I prayed and I still do. The difference between then and now is that I can finally admit that "I don't have a clue". The information that I read in books and on the internet did teach me things about autism, but the real teachers are the "parents" like yourselves, that deal with all the individual behaviors, and tantrums and sensory issues, and disappointments and misunderstandings of each child as an individual, and cope with these issues that you have no control over but do the best you can each and every day, again and again and again. No one can understand the joy and the heartbreak that is a constant in your lives like you can. So, don't feel bad or guilty when you have to tell others "NO" its obvious to me that your family comes first, so be proud knowing that you are doing the best you can for everyone involved and don't be so hard on yourself. You do a great job, give yourself a break. Just keep doing what you're doing; "Spreading Autism Awareness". Thank -you Rob, you are a true inspiration.
@michelle trupiano thank you so much. Thank you for having ton amazing attitude you have. 🙂
You have to do what's best for you and your family. I think when people express disappointment that you can't attend events, it expresses how much they miss you. They wish they could spend more time with you. But if you can't fit others into your life right now, then that's understandable.
@Grace thank you grace. 🙂
You have the two most important people who understands your family, your thoughts, opinions, fears, fincial struggles, health issues and autism……your MOMS! You don't need to worry about anyone else. Be blessed you have your moms who GET IT! The most frustrating things is having family not understand your struggles, especially your MOMS. Be blessed, be very BLESSED! You're doing the best you know how and that is caring for your family. You know life in general is complicated enough then add everything else, you're doing a fantasic job. I admire your honesty and sharing with us all.
@lyndavisyak thank you very much. 🙂
Please don't worry about their opinions-they don't completely understand how you and Lizze are caught between a rock and a hard place. You have to decide and do what's best for you first and your family, even if it means doing what other people don't agree with your choices. I'm not familiar with special needs requirements but what with suffering from severe fibromyalgia, when I do attend a party or special event, I cannot stay more than an hour without discomfort. And sometimes people act disgusted with me "What's the matter with you, Mary Ann….being a party pooper" and so on. In summary, even if you were to attend an event, they might take it personally if you have to leave early. Do what YOU c
feel is best.
@MaryAnn47 I think Lizze would completely understand where you are coming from.