I can actually say I’ve been right there. On the day we learned our son would need dialysis we learned we had to put our dog down. Same thing – cancer. I just couldn’t fight for her life and for my kid’s life, so we decided to say our goodbyes and it was very sad, but I almost felt like I couldn’t even mourn her, you know? I had to move on to the next crisis.

I think one of the things that has helped me over the long haul (dealing with special needs now for 12 years) is that I try not to get to high or low. I try to manage my expectations, hope for the best but not get hung up on it, and without fail, I have an outlet (or three). I blog for starters, I sew, I scrapbook, I enjoy movies and I am very connected to a few friends that either understand or want to.

I think us having something just for us is really important. Really, really important. Do you have an outlet? One night a week where a few hours that is just yours?

How are you and your husband doing? Just wondering if that is a stressor too?

I know the piling on thing is hard when it’s already hard and I’m so sorry. It does get better…and if it stays stressful for a long time, we usually adapt and find ways to cope…like find some time for yourself.

Keep reaching out!

You are sooo not alone. Please feel free to contact me any time.

My older two (16 and 18yo) are adopted special needs teens (RAD, C-PTSD, bipolar, ADHD, processing issues…. Recently my 16 yo daughter had to be placed in residential psychiatric treatment for suicidal ideation and aggression at home. It took almost a year to find a place that did trauma work, would be paid for by our funding source, and would keep her safe and wasn’t over her head (in a lot of ways she’s only 6 yrs old). She was supposed to be there 4-6 months, but after only 6 weeks I got a call that she wasn’t “getting” the program and they were going to start transitioning her home. I started freaking out.

Her brother (18) who doesn’t graduated until May decided suddenly to move out (husband told him to surrender his iPod since he wasn’t doing his chores and he decided to run away instead). While he’s been gone he’s broken his pinky – permanently disfiguring it because he put off telling me and seeing the doctor. He lost 18lbs in 3 weeks. I’m not happy that he left like this, but kinda saw it coming, and honestly the house has been a little calmer… except I started cleaning out his room.

He’s a hoarder so it took days to go through everything (used condoms were not the worst thing I found), I’m patching all the holes, sanding and repainting the walls (he spit, so there’s petrified spit globs everywhere), throwing away most of the furniture, clothes and bedding which are beyond trashed. The bathroom (which the other kids have refused to share with him for years) needs to be completely redone too because he did worse things to it.

Plus my 15 yo got mono and was out of school for 6 weeks, although I have to admit she had a really mild case so it was actually a chance to spend some time together which we haven’t had much of since adopting 5 years ago.

In the meantime my “baby” turned 13. Although he’s still pretty sweet.

I’m so blessed that everyone, including the pets, have been relatively healthy, and I’m trying very hard to focus on the positives.

Hugs and prayers!
Mary

I’m so glad not to be alone. There is no one…I mean no one, beside the kids therapist and my own that really understand. And even then, they tell me more often how difficult my life is than what to do about it. I’m supposed to start exercising every morning — “I want you to totally exhaust your body first thing in the morning because an anxious mind can’t live in a tired body” — I was told yesterday. And while I know it’s true…really? You want me to be more exhausted, on purpose? I have to make myself start doing it. I know I’m in a bit of a black hole that I will/can pull myself out of, I just have to do it.

I wish I had a friend to call, or even my family, but no one understands. They don’t understand the need to keep such a rigid structure and schedule. What the kids can and cannot eat/have. The fact that it is easier if my husband and I stick together as a team. Being on your own when the kids are having bad days, I’m not gonna leave DH with that and he wouldn’t me either. My sister got mad at me last week because I couldn’t drop what I was doing to go see a movie with her.

Thankfully I do have a wonderful DH and I cannot thank you ladies enough for lending an ear and your time. It is insane, from the outside, to see how we DO live our lives on the edge almost all the time. I have gotten used to the running, the calls from school, the calls from the hospital, the need to be prepared to go and do whatever at any moment. But yeah, when we got the news about our pup, I thought I would lose my mind.

I have outlets. I am a writer by profession. I love to sew, crochet, paint, do pyrography. I actually was invited not too long ago to be one of the local artists featured at an event that goes on in our downtown area every friday thru the summer. So, I need to be preparing for that and writing as well. It has been five days since the news and it is getting a bit easier every day that passes to pick myself up a bit more. But I feel like I’m trying to run through the ocean, waves crashing and water pulling against every step I take.

I am really surprised at how similar we all are with our pets and hobbies + strife and stress. It kinda makes me laugh because people thought I was CRAZY to marry a man with three special needs kids. But I love them all and they deserve to be taken care of…it is hard…but they have lived more life than I ever will and not a good one. I am joyful to give them the love and care they need, even though with RAD they don’t generally give it back and on occasion have even hurt me physically. When it comes to my kids and husband, I know deep down in my heart I am exactly where I am supposed to be.

I am generally very on the positive side. I have worked to learn my coping skills and I have done so well at being a first time “mom” in the situation I am in. So, I don’t know what about the dog makes me want to scream to the heavens — “Is this really necessary!!!!” But I guess we are not immune, even with the lives we already carry, to other forms of grief.

I cannot tell you ladies enough how truly touched I am just to have someone share the stories you have and the support. It means the world to me. During this time I am going to be spending more time on the forums. I’m gonna get there…we all are gonna get there. : )

Bless you all and I will be keeping every single one of you moms and your loved ones in my prayers. You are all amazing women and I really hope you know that and have someone around who tells you that constantly. Anytime you need it, I will be glad to!

And thank you, thank you once again for just taking a moment to tell a stranger that it will be ok.

Thank you so much Mary. I will definitely get on FB and find you! And I am totally interested in the RAD group. I will need to figure out the privacy settings of it just because the kids identity needs to remain pretty anonymous because of the way they were removed from their bio home. We had to move them out of state and change their middle and last names for security purposes. Thanks so much for the info!
XOXO
Mere

We also have a RAD group here we’d love to be more active…so please spread the word about it! Thanks!

It will change the admin on the group to me…so people get approved. It could have been started by someone who isn’t active now.

While I am not a parent who has child with special needs, I am caregiver of children with special needs. Specifically I work with children in the daycare world ages 3-5 that have special needs. I preface this with the notion that I do not know what anyone is going through from a parental perspective however, I am writing from a professional perspective about a system that promotes exclusion rather than inclusion.
Currently I am working with a boy that has Rubenstein Tyabi Syndrome. This syndrome is a genetic disorder that has a host of cognitive and physical differences than a neurotypical child. He is a wonderful boy, and brings me much joy to be working with him.
I work with intolerant individuals that have the us versus them mentality. I often have heard my co workers state “it scares me to work with those children and I suppose someone has to do it” and find myself walking away in disgust.
I advocate strongly for the children in my care and whilst I do not have them 24/7 I do spend upwards to 50 hours a week with them. A drop in the bucket to what the parents of special interests( a term I learned from the Reggio Emilia preschool system) go through on a daily basis. However, inclusion workers such as myself battle on daily basis for the similar reasons to the parents of the child. Rights to adequate and appropriate care, inclusion and activities geared towards the child with the challenges and tolerance. I have caused much stir with my supervisors over the issue of inclusion and tolerance.
Now that I am older and almost finished my degree, I find myself experiencing caregiver fatigue as well. I often wonder why I bother, and if I want to continue the fight.
It is however, through the small victories, in my little dude’s case, hes beginning to communicate with sign language and now self feeds, that I continue on.

Thank you for letting me put a non parental spin on care giving fatigue.

Abagail