Did someone give a their job for the special needs child(ren)?
I worked, on and off, as YoungSon was growing up. He was in school only for about 3 months, 3rd grade if I remember right. Generally, we unschooled. I only worked for a couple years that he was too young to be unsupervised, and my Mom lived with us during that time, so childcare was not an issue. YoungSon is now 17, and attending mainstream high school. And I am working; have been for the last 3 years. BigGirl, 18 now, was also at home, so he was not alone.
Finances are obviously the biggest obstacle for most families. I had a few home businesses over the years, with varying degrees of success. I accepted state assistance and financial aid while I was in college (online, so I could be home). I had therapeutic foster children for about 5 years - that brought in some money, but the real reason was that I learned that I am pretty good at parenting high needs kids. I raised and trained baby parrots for a while - until the economy tanked, and people stopped buying ridiculously expensive pets. I made baby clothes for sale at a local craft market and online - that was fun because the kids, even foster kids, could help run our booth. But lots of work for very little profit. I tried to start a board and care home for elderly and disabled residents - the idea was that my kids and I could live and work together. Although I put my life savings (and my heart) into it, my business sense was not up to the task, and it failed pretty dramatically. Bancruptcy and foreclosure; the whole deal.
Somehow, we all got by, and I attribute YoungSon's remarkable progress to the fact that he was not pushed to go to school when he could not handle it. In addition to ASD, he had serious anxiety, and being away from me increased it exponentially. That pretty much resolved itself when he was around 14, and today he is as independent as any teen. Today, I work full-time at a job I love. I totally get what you say about being fulfilled, and the break from the chaos that home can be with special needs kids (at one point I had 6 at home - my 2 near-teen Dumplings, 2 high needs foster kids, and my infant and toddler grandchildren). It was exhausting! It was a relief to go back to work.
My suggestion would be to see if there is anyway you could take a sabbatical or leave of absence from your job. A year, or even a few months, to see what life is like. Casual, low-stress homeschooling, a time to see how your kids (and you!) fare with lower pressure and fewer expectations. If you decide to go for it long-term, there are ways to make it work. But if you can give it a try without closing any doors, that would be even better. And knowing you had an escape plan would lower some of the pressure. Another important aspect of not working at a job is social - plan for some adult interaction, daily or weekly. In addition to purely social things like a reading or knitting club, there are support groups in some cities for families with high needs kids. Some people find connections in these groups, but for me - I needed to get away from talking about my kids as much as I needed to vent about them! Is there any way you could stay in contact with your job, work part time from home, or as a consultant? I have no idea what sort of work you do, but sometimes a little creative thinking can work wonders.
I did. It was a combination of circumstances - we were all struggling to balance work and our SN DS. I was a full time professor so my schedule was flexible but we were all miserable and DS was definitely struggling.
We tried to put him in a daycare but it was a disaster. We hired a nanny (with financial help from family) but even that wasn't working. So when hubby got a great job offer in a different city (a place we really wanted to live) we decided to go for it even though it meant me leaving a job I absolutely loved.
For DS it has been a life changer. I think it has made a world of difference for his behavior and general happiness. He seems more secure which has given him confidence. I've also been able to coordinate his therapy and routine a bit better (though I'm also ADHD and terrible at organization. I had to set up a schedule of activities and classes for him to keep us on track).
For me it has been a mixed bag. I definitely miss work. I miss the mental stimulation, the time to myself, feeling like I was out in the world doing something I'm good at, etc. I am BORED and lonely at home to be quite honest.
That said, I don't regret our decision. While I'm bored and miss work, I am also getting to spend a lot more time with DS. I feel like it has been good for our relationship. I think, looking back, I would have regretting missing this time with him. I also would have always wondered/felt guilty about working when he needs additional help. So I'm getting great satisfaction feeling like I am doing right by DS and that I get to be the one raising him during this difficult time.
I do hope one day in the future I can go back without it having a huge negative impact on DS. I think that will happen, but at this point I'm not sure.
My one advice for you would be, if you do decide to stay home, make sure you set up a time/place/way for you to have some time away from home/family. For me, I get a few hours a week while DS is in therapy. Rather than clean house or run errands (which is what I was doing at first) I realized I was going crazy without anything for me alone. So now I take those few hours to go to a coffee shop and write fiction. It's something I've always wanted to do, and it is saving my sanity to feel like i have something to think about and do other than just be a mom. Clearly not everyone needs that, but I definitely did!
I did. I was a SAHM for several years with my first couple children. I continued some education, furthered my skills during that time, acquired an extensive certification. My first two children have varying SNs themselves, my third child is ASD. When #3 was a young baby, I was approached with an amazing job offer, part time, but I would essentially be on-call 365 days a year. I did that for the next few years, I loved it, it was the prefect fit for a while. As DS1 grew older though, and his needs became more known, and our schedule became stacked with one therapy after another, it wasn't working well for him anymore. I stepped down last year. I really miss it and I've agreed to do high risk only consulting here and there but this is what our life needs right now and maybe someday, it will be different.
I did, althought not directly. I knew I wanted to homeschool my kids long before I knew that they were special needs. So I gave up my job as a research scientist to be a SAHM (I do a bit of work part time from home, but very flexible hours). However, it became apparent as they got older that they would never have tolerated school, and eventually we got our diagnoses of HFA for DS and Aspergers for DD.
As the OP's OT said, the days in school would have been way too long for them. As it is, they are now 8.5 and 11 and cannot attend a summer day camp for more than 3 of the 5 days because otherwise they come home and have major meltdowns and behavioural issues from the stress of having to "manage" so long. I suppose had I no choice but to put them in school, eventually they would have learned to cope, but I am very glad they are instead doing so at their own pace and not being "thrown in the deep end" when not ready for it.
When they were little, I learned just from experience that there was only so much errand-hopping, playground visiting, etc that they could handle before behaviour would start to deteriorate. I learned to see the signs that they were "done" and knew I had to go home at that point. I got a feel for how much I could plan to do with them, and it worked out well so long as I didn't push my luck (those were the times when I'd have a melting down kid in the grocery store, ugh). Then as they grew older and got involved in more activities I was always careful to make sure I didn't overschedule them. I would not schedule more than 2 activities in any given day, usually only 1, and I would make sure we had at least one day during the week with no plans so we could stay home if needed.
Also, they both went to preschool, which was only 2.5 hours, 4 days a week, and both had problems. I had to withdraw DD halfway through the term and DS ended up getting an aid to shadow him to keep him out of trouble (at that time I didn't know my kids were on the spectrum; you'd think they would have figured it out getting him an aid, but oh well...).
But it wasn't until last Spring Break when I enrolled the kids in a week long day camp (from 9:30 to 3 pm each day) that I got confirmation that they were still not able to handle a "school schedule". Even though they were having a good time, DS went from Golden Child on day 1, to hitting a couple of kids on day 2, to hitting pretty much everybody on day 3 (this was a camp for autistic kids, btw). This was a clear sign that it was all too much for him. In summer I had him go every other day (3 days on, 2 days off) and that worked out much, much better.
DD isn't a hitter, and she isn't prone to acting out in front of people she doesn't know well. So she would be "just fine" and then I'd pick her up and she would start acting up. I remember on Day 4 picking her up and the minute she got into the car she started freaking out b/c I was talking to one of the mums. She went from "my day was great!" to screaming, screeching, crying in about 10 minutes. So the next time I had her at camp, this summer, I only had her go 3 days. The staff were very supportive of this, btw.
It could be argued that if my kids went to school they would have adjusted by now to long days, five in a row. But maybe they would just have been a lot harder to handle b/c of the added stress. Honestly, at home, my kids are pretty easy and I think its because they have a relatively "unbusy" life, with plenty of time for mental breaks. Also, I truly enjoy being around my kids and would miss them terribly if they were at school.
This reminded me of when DS was about 6 or 7 we visited a resort with a pool and he would jump into the deep end - he couldn't swim! We'd be waiting at the deep end for him, he'd jump in, and we'd have to pull him up and take him to the ladder. He thought it was great fun, but then he started running to the end before we could get back there and jumping in. Scared the crap outta me! He just had no concept of the danger.
I will say that autistic kids definitely need their down time and I make sure it is sprinkled throughout their days. It really helps keep them on an even keel...
That is DD! The woman who does the afterschool care says it is as if someone exchanges the child as soon as I am through the door. DD1 had very good behaviour "marks" on her reports, and our OT said that she is probably holding it together so much in school, that she just falls apart as soon as she can.
Homeschooling is not an option here, it's against the law. Plus, there is no support or anything, since nobody does it or tries it.
but "school" is only from 8 -12, and I could pick her up directly afterwards if I wouldn't work...