Posts for category ‘Respite Care’

Max and I have been planning a great summer. We aren’t going to let it just happen. Or let other people tell us what we are going to do.

We are going to climb mountains. We will visit caves, hike, and go camping. We will go to baseball games and fish. And we’ll also do mundane stuff like wash the aluminum siding, paint, fix windows, and weed gardens.

And you know what? If people don’t want to join us they can just stay out of our way!

Where do these statements come from?

My wife, son, and I have always been on our own. Yes, we have siblings, and Max has grandparents. But you know what? None of them have ever offered to take my son overnight. Heck, the only time he has a play date with his cousins is if we call them to suggest it.

To be fair to the grandparents, they are elderly and are afraid of being responsible. Max has several disorders. He has ADHD, Bipolar Disorder, Asperger’s, ODD, and whatever else the doctors can label him with. And his tantrums can be horrendous.

Max’s cousins love him but their parents get nervous when he is around. They are much happier if my wife and I are present.

His friends have sleepovers with other friends but my son has only had two in his life. One was with his aunt and the other with a friend of his grandparents. Neither turned out very well.

So it has been just the three of us: Mom, Dad, and Son. We go to dinner with each other. We go away together. We do other fun things together but basically it is all of us, or Max and me.

My mother made the comment recently that my wife and I cater to Max. I am not clear on what she means. It sounds like she thinks we spoil him. I don’t think so. We tend to be stricter than my siblings. Hey, we’re even tougher than my parents were.

We don’t give him more than the others. My brother takes his kids to Disneyworld every year. My sister takes hers to Cape Cod and Hawaii every year, too. But what else are we going to do?

Mom says we are doing our best to give him what he needs at our expense.

Because of Max’s issues we work closely with the Department of Mental Health (DMH). They not only suggest programs but sometimes they’ll even pay for outings. This is great but they’ve got it in their heads that we need respite.

Respite is when children are sent away for a night or a weekend so that the parents can get some rest and perhaps have a date. Parents of “normal” children get this all the time. They are able to send the kids to grandma’s house or to a friend’s house for a sleepover.

But for children like Max there are two options. They can be sent to a mental health hospital. Some of these provide respite care. Children can go for an afternoon after school, for overnights, or weekends leaving the parents free to do what they want for a short time.

A second option is to go to the home of a foster parent who specializes in respite care. Like the hospital, the children can stay for an afternoon, night, or weekend.

DMH and even our parent counselor have been really pressuring us to do this. But here’s the thing. We tried the hospital route. This did not work for several reasons. But the most important one:

• It reminded Max of the two long term stays he had already had in hospitals. Both were very traumatic for him. As a result he fought bitterly against being sent there. On two separate occasions he spent a day there and once actually stayed overnight. After the last time we refused to send him anymore it was causing him too much anxiety.

After that we tried weekend foster care. He loved the kids and we never called it respite. They were play dates. And we suggested having sleepovers there but he wasn’t interested. The problem, I think, is that he talked to the other children. They knew the real reasons they were there. He slowly became more and more resistant to going.

In both cases we noticed how unhappy he was. And, in fact, when he went it really wasn’t much respite for us because we worried about how he was going to be with them and how they would be with him. We knew that the hospital would restrain any of the kids that acted out. I know through personal experience this doesn’t help him.

And we always worried how things would go at the foster home.

I have different ideas about respite. I don’t like sending my son off to other people. I’ve never understood the boarding school concept. I don’t want to just see Max on holidays and vacations. I would rather do a thousand different things with him and give my wife any respite that she needs.

I think this comes from my Dad. When I was 7 years old I started working with him after school and on weekends. Quite often we would spend Friday and Saturday nights away. We did this for ten years. These were the most enjoyable times for me growing up. I admit in my teen years I wanted to be with my friends but I’d still go with him and have a great time. And hey, it wasn’t bad for my Mom either!!

I want to do the same things with Max. Granted I don’t have a job that takes me away nights and weekends but my son and I can still have fun day, and maybe even overnight, trips through the summer. This way my wife will get some respite. And honestly going to fun places with my boy will give me respite too!

I was talking to my counselor the other day and asked him if my Mom is right, am I catering to Max. He responded that yes I’m catering to him. And if done correctly these can be great father and son moments where I get to model good things.

He brought up the early morning walk we did recently.  He believes this is great modeling.

So that is my plan. Max and I are putting our summer schedule together. There are many mountains to climb; lots of caves to explore; baseball games to see; and camping trips. It’s going to be a great summer!

Parents need respite from raising their kids.  Most have a natural outlet.  Their kids spend time at their grandparents or their friends houses.  It gives them time to energize themselves and be refreshed when the kids come home.

But what do people of kids with disorders do?  Quite often the grandparents aren’t equipped to take care of them and the kids don’t have friends to stay with.  Certainly these parents worry about sending their kids away.  What can they do?  If they are unable to find some rest they won’t be any good to themselves or their children.

My wife and I have been working with the local Department of Mental Health (DMH) office.  They had suggested a place for our son Max to go to on weekends to give us time alone.  I wrote recently about our initial attempts to get him to it and the subsequent meeting with DMH. Though he went twice; the third time we couldn’t get him anywhere near the place.

We could not schedule the time originally agreed to, the Friday after our meeting.  We were, however, able to set up an overnight for the following weekend.  On that Friday Max’s mentor picked him up as usual and they took off for their afternoon fun-time.  While they were gone the family therapist stopped in to get his backpack as we had planned.  She then went to meet the other two to pick up Max.

From there things fell apart.  He was not ready for the change.  He expected to be dropped off at home after his afternoon; not to be picked up by someone else.  And he did not want to go back to that place.  It is more of an institution than a welcoming home for the kids.  Max has to sleep in a dormitory with a dozen other boys; some of whom live there permanently.  And, as mentioned previously, all of the wonderful things that the parents were promised were planned for the kids don’t happen.  It’s more of sitting and staring at a television set all day.

In the end the family therapist dropped Max at home and we drove him there ourselves.  He cried bitterly when we dropped him off and they had to restrain him as we left the building.  We called when we got home to make sure he was okay.  We were told he settled down 5 minutes after we left.  This was of little comfort and we spent the rest of the night trying to calm down.  This was respite???

Not long after we got up in the morning the calls started.  Max wanted to come home; when were we going to pick him up?  We promised that we would be there by 11 a.m and he cried.  It then hit us with a sledge hammer; this was exactly the same experience as Max’s first and second hospital visits.

And as I suspected when we picked him up it was another day of just television.  Max had not even been allowed to work on crafts…it was not on the schedule!  We got him out of there as quickly as we could.  Max was a perfect angel for the rest of the day perhaps fearing that we would send him back.  But just as I do not ever want him to go back into a hospital I won’t ever bring him back to this place.

DMH was surprised when they heard the results.  They hadn’t believed us when we told them what was going to happen.  The only good thing that came out of this (if you can call it that) is that they now can see for themselves why this kind of respite won’t work for Max.  But they were quick to point out that he settled down within minutes of us leaving.  I am not convinced that was because he was okay; I believe he was just resigned to the situation.

Not to worry, they tell us, there is another option.  There are families that will take these kids in for a weekend to give the parents some respite.  These are regular homes where the “respite kids” mix and mingle with the families, play with them, eat with them, and generally have a lot of fun over a weekend.  It is like sending them to their cousins’ homes for play-dates.

Well, we are willing to meet with the family they have in mind.  We’ll talk to them and see if it a good fit.  But with Max’s hyper anxiety I don’t know if he’ll last a whole weekend without his Mom.  We’ll see…

My 8 year old son Max gets a lot of services through the Department of Mental Health.  He is eligible for them because of his diagnoses.  These include bipolar disorder, adhd, pdd/nos, odd, ocd, high anxiety, and sensory integration issues.  Because we have been receiving all of these services we have been trying for months to get a meeting together to make sure that everyone is working towards the same goal.   That is, improving my son’s standard of living.

I just came from that meeting and it was interesting to say the least.  Before it happened we insisted that either my wife’s counselor, Max’s play therapist, or both be present otherwise it would be a waste of time for us.  When we arrived this morning both surprisingly were there especially since it didn’t look like their schedules would match.   Also there besides us 4 were our family therapist, Max’s mentor, their supervisor, and the caseworker who was leading the meeting.

Before we started the caseworker had to make the point that he didn’t know that the play therapist was going to be there.  Apparently it was going to change the dynamics of the whole meeting, whatever that meant.   The supervisor piped in that we were there to discuss why we were dissatisfied with their services.  My wife and I looked at each other in shock; we never said we didn’t like the services, we just wanted to make sure everyone had the same goals.  To that end we had wanted the play therapist involved since she works with Max directly.

Once we got this straightened out we could then start the meeting.  The play therapist talked about how Max has a major problem with limits and the word “No”; either can set him into a tirade that can be physical and/or verbal.  She says that when this happens she sees a totally different boy than the one she is used to dealing with.  When she starting working with him in October she thought that his parents were too lenient but she finds that today in August they are stronger and more consistent.  When he explodes he must spend time on the couch until he calms down.  If he gets violent Dad will hold him until he settles down.  She sees a lot of improvement.  She has been working with him on accepting boundaries.

The family therapist talked about how she originally had intended to work with the whole family but Max wanted all the attention on himself.  It made it very difficult, so at his parents’ request she started working directly with them to help them learn to communicate with each other and become more supportive.  She believes that there has been improvement.

Max’s mentor says she goes with the flow.  They do things that he likes to do such as basketball, bike riding, or swimming.  In the process she has been working with him to accept “No” as an answer.  She will say “no” to minor things; he will grumble and may ask a second time but that’s it.

My wife’s counselor talked about how she is worried about Max’s parents.  She would not only like to see them communicate more but they also need some rest; raising Max is exhausting.  Our caseworker jumped in at this point and thanked her for bringing him to the subject he most wanted to discuss.  This is “respite”.

For months we have been talking about getting rest for Mom and Dad on the weekends so we will be more able to take care of Max during the week.   It would also help our own relationship; as the therapist said we could start dating again.   This was a timely subject since my wife and I were actually falling asleep in the meeting.

Respite is kind of a sore subject.  It was first brought up in January when our caseworker mentioned a children’s home that has kids living there permanently.  On weekends it is available for families to drop their own kids off to give everyone a chance to relax.  It is a structured environment with programs that are not only fun but teach the children how to manage their behaviors.

My wife was excited; I told the caseworker at the time I didn’t like it but I would do it for her sake.  I didn’t want to be separated from Max; I felt that we should be doing things together on weekends, if not as a family, at least as father and son.  That’s the way it was when I was growing up.  He took that to mean I wouldn’t do it at all so the idea got shelved.  It came back up in May so we went for a tour of the facility.  It had a lot of things Max loves like a weight room, basketball court, and a bike track with bicycles.

When we first mentioned it to him Max was excited especially when we took him just to see it.  What made it better for him was that one of his friends lives there so he would have someone to play with.  He was all set to stay overnight but we decided that a few hours the first time might be better to ease him in to it.

He stayed 4 hours the first time but he wasn’t too thrilled with it.   When we arrived a counselor promised him bike riding but then couldn’t find a key to the bike shed.  He agreed to a second try the next week.  That day it was raining so he ended up spending 6 hours in front of a TV set; Max doesn’t like watching for more than 10 minutes at a time.  He was very quiet and subdued when he got home and very clingy.  We scheduled 1 more trip but cancelled at the last minute when Max refused to go.   This was in June and we haven’t tried since.

So the subject came up again today at the meeting.  They insisted forcefully that we try it again.  We insisted just as forcefully that we would not drag him kicking and screaming to the place.  We have gone through this before and yes, as they pointed out, it works out sometimes.  Going to his school was initially a disaster but he grew to love it.  But you know what, his first trip to the hospital was not pretty.  He didn’t get used to it and this is where his anxiety levels initially skyrocketed.  The home gave me a little bit of the same feeling; I can only guess how he felt.

Anyway, we’ve decided to try it again.  We are going to schedule an overnight this Friday night.  This time we won’t drive him; Friday afternoons he spends with his mentor so she will get him ready to go while they are on their outing.   The family therapist will meet them and drive him there.  She will stay for an hour or so to make sure he settles in.  On Saturday his mentor will visit him and see how things are going.  At the end of the day we’ll pick him up.

My wife and I have a lot of concerns but we are willing to try it; not only for ourselves but for Max as well.  The caseworker has promised to call the home to voice our concerns.  That is, that my son is not getting what he needs. If they are going to watch television all day let him do arts and crafts at the same time, this will settle him.   Take him to the gym, he needs muscle work to relax.  If it a sunny day take him outside, he needs the sun!

With that everyone at the meeting was satisfied that everything was accomplished.  It was adjourned and we all left for home.  But as I write this my concerns about respite are resurfacing.  I’m not coming up with reasons not to do it as the caseworker suggested.  I want this to work for both Max and my wife.  And no I don’t believe that Max will not be affected by this as he also suggested.  Today is Wednesday, Friday is the big day, I will take a wait and see attitude.   If it doesn’t work out I’ll be looking for something else.  If it does it will be great for all of us.