In need of some words of encouragement (long)

oandmplus1 · July 2014

DD is 3 now and has been in ABA, OT and SLP for over a year for ASD and language delays as well as low muscle tone, SPD and developmental delays. She has had some type of therapy or another, though, since she was 6 months old (because even then she was lagging in meeting milestones). The list of things they give us to work on is very very long, and of course each discipline has their own goals. She has therapy every day, and goes to a special education pre-school class and gets therapy there as well.

She had broken her leg, and because of the lack of mobility, new stims started popping up (she is a big time seeker). Since then, we have struggled to get her back on track with therapy. She just isn't focused and is constantly looking for escapes, not really wanting to do things she had almost mastered before breaking her leg. She has made very little progress towards her ABA goals in a while now.

I feel like a big part of this is my fault. Between working full-time at a very stressful job, never seeing my husband during the week since he works 3rd shift to be able to help with appointments and therapy, and having a 14 month old who is very needy, I feel like I am not keeping up on working with her. I feel like I have let things slide at home, and haven't been as consistent as I should be. I am just so tired by the time I get dinner on the table for me and the kids, I have no energy left, and I do bedtime routine alone since my husband needs sleep before work.

Before you suggest we hire help for things, I can tell you our money is very well spent on a babysitter for DD so she has 1 on 1 attention all afternoon after school until I get home. They do work on the long therapy to-do list, but I also encourage them to get out and play as well because DD loves to be outside. We can't afford any other kind of help because we spend so much to provide her this attention (we also pay full time daycare for DS).

I know how important this is. I just need to do better. No advice needed I guess, I just need some positive thoughts, and the support of those who have been, and are, in my shoes with the daily struggle of fitting it all in when there is never enough time or energy.

bumpuser511563 · July 2014

I myself can sympathize with your scheduling. I work full time and DS use to have ABA 6 days a week plus school and daycare. DH made it possible for DS to be home for the ABA therapy because our insurance could only cover at the home.

I had zero time to work on any goals extensively. The only goals we got to when we had time was with day to day skills such as getting DS to ask to use the bathroom and the reward system.

algalphys · July 2014

I don't have advice, just hugs!

hopecounts · July 2014

it is so hard to stay on top of all the things we need to.

My suggestion (if you want one if not feel free to completely ignore this) instead of trying to do everything on the long list prioritize.

I would focus on behavior (ABA) and whichever other therapy you feel is most important for her right now and pick 1 goal for each then honestly let the rest go right now.

You can't do it all and it sounds like you are burned out so give yourself permission to have a vacation then refocus and hit it hard.

((hugs))

oandmplus1 · July 2014

Thank you guys! If nothing else, it helps to know I am not alone

ToastieSimons · July 2014

It's not your fault. She may just need time to get back into therapy.

DS2 goes through this in phases. Where he is so willing to work and does great. And then times they can barely engage him through a session. They're kids, they still have personalities, will and desires on top of their disabilities. This may have happened even if she hadn't broken her leg. I find my kids have this spurt where they are hitting goals and making strikes and then they plateau for a while.

It sounds like you're talking about 1-2 hours a day that you're not working with her. Between school and a caregiver you've hired for her she's getting a lot of time during the day being engaged.

Give yourself a break. It's okay. You are doing the best you can. I find when I'm feeling like I'm not enough, it's best to take a full on break. I sign up for a class out of the house, or something else where my mind is completely occupied by something unrelated to therapy, medicine, doctors, school, etc. I come home much more recharged.

Oh and the plateau times get really old really fast. It's like groundhog day every day over and over again.

hopecounts · July 2014

Oh and self care is incredibly important as the spiel goes 'put on your oxygen mask before you assist your children'

You'll do her no good if you are so burned out that you can't function.

Make sure you take some time for yourself to recharge and refresh and your husband should to. The two of you are dealing with a schedule that is difficult under the best of circumstances add in a SN child and you are both at risk of burn out. Make sure you both have some personal time so you can keep going.

CaptainSerious · July 2014

I'm sorry to hear you are struggling.

As SN moms, I think we often feel guilt for not doing as much as we think we should. We know that the more therapy our kids do, the better their outcomes, and it's tempting to fall into the trap of thinking that if we just trimmed our schedule a little more, showed a little more dedication, didn't "slack off" (in quotes because I think most of of think of self-care and rejuvenation as slacking off) quite as much, we could make a significant difference. It's a fallacy, though.

That kind of thinking doesn't account for the fact that the best thing you can do for your daughter isn't just stuff that is the most immediate. We need our jobs for income and sometimes insurance. We need to not only look after our children's therapy, but also their well-being as a whole, including their happiness, development of self-esteem, physical fitness, need for down-time, and fulfillment of their passions. We need time to play with our children, to nurture them without the demands of tasks, chores, school, benchmarks, and therapies. And we need time to take care of our selves, and that means allowing ourselves time for all those same things our children need, including time to just be. What's most infuriating is that these needs are constantly in conflict with one another.

It's so important for us to remember that the best we can do IS the best we can do. We all love our children above all else. We are not leaving them by the wayside when we turn our attentions to other things. We are simply doing what we can, when we can, and that IS the best we can. In the end, I believe, all our efforts will even out.

Lots of support coming your way. I hope things ease up for you soon.

starrdiva211 · July 2014

*Hugs for you* We are basically in the same boat.

But, try to take some time away and relax for yourself. If possible, take a half vacation day and just chill out in your favorite place or take a whole vacation day and get a hotel room (if it is within your budget) and just sleep and relax. I know it is easier said than done and many of us struggle with doing so but you will feel and that will transfer to DS and DD.

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