It’s time to face the world again…
It’s been almost a week since my last post - a week that seems rather cloudy as I look back on it.
In fact I missed my Wordless Wednesday this week… but it was going to go something like this:
Yes, just a snap shot of the week that has been.
(But at least the picture gave me a bit of a giggle when I needed it…)
That feeling of being overwhelmed seems to have been hanging around here a bit recently. And it’s nothing in particular that stands out as being the ‘overwhelming thing’… it’s just the combination of everything working together this past week, and it has left me feeling pretty much ’steam rolled’ or ‘hung out to dry’…
I mentioned to a friend a couple of days ago that I had found things really difficult this week. She was really comforting in her response… she shared with me her own similar experiences with what I had faced this week, and she reminded me that through sharing both our good times and our more challenging times, we help each other.
So it’s time to face the world again… it’s time to turn to some friends… and it’s time to share some stuff…
Jack starting at school this year has been a lot more wearing than I ever thought it would be. Dealing with the normal stuff that comes with starting school is enough for anyone, but add to that the extra stuff that is required for a child with special needs and (as I have discovered) it can be enough to totally blow you out of the water… or in my case, leave me feeling quite emotionally paralysed at times, stuck… and not quite sure of how to move forward…
Jack began the school year attending 4 days a week (as did all his classmates). The week just gone saw this increase to 5 full days for all of his class. For Jack, 4 days has been enough for him to cope with this far. He has been having 2 days at school, a day’s break, and then another 2 days at school. Wednesday’s have been a day for him to rest and recouperate… and he has desperately needed this time. So with 5 days looming ahead in the week, we made the decision that regardless of what the rest of the class were doing, in order to survive the week, Jack would have a full day’s worth of time at home.
So this last week we arranged to pick Jack up from school at lunchtime on 2 days of the week - he has been coping better with the mornings so we thought this would suit him best. Great in theory, but dragging him away from school when the rest of his class were staying and of course then trying to talk him through a change to his normal school day routine was not easy… actually the first day of this was quite a disaster - particularly when I brought him home and tried to talk him into having a sleep or at least a rest lying down. He pretty much cried and screamed at me the whole afternoon and evening, sending the stress levels in the house sky high!!
Day 2 of this arrangement, Thursday, was out the window before it even began. A paediatric appointment late morning kind of threw the day into confusion from the start… I kept Jack home from school in the morning, with the idea that we would attend the appointment and then take him to school afterwards. We arrived at the doctor’s office for our appointment only to have to wait 1 1/4 hours… have Jack totally ‘meltdown’ in the waiting room (and injure me in the process) and then ‘meltdown’ again in the doctors office (when we finally got in there). This pretty much set the tone for the rest of the day.
I have to say that it wasn’t the best appointment that we have ever had with a specialist. In fact, without saying too much, it left me feeling pretty distressed, extremely confused, and really down and out. Tears came in bucketloads that day… and the next… and I realised very quickly why people have always said to find specialists who know what they’re talking about, and who are very good at what they do.
Thankfully Jack’s speech therapist rescued us at this point. After a long chat with her (the day after our paediatric appointment) I managed to pull myself together enough to see forward from our bad experience. And with her help I managed to schedule an appointment for us with a more highly regarded specialist to take over from where we had left off the day before.
That evening I stuck a quote up in front of my computer… “When It’s Dark Enough, You Can See The Stars”… Yes, this week signified a pretty black night, but we were blessed, and there was a star twinkling…
So the road ahead of us is steep.
Jack’s anxiety around change hasn’t been easy to manage over the past few weeks, but we really need to try and help him harness that.
I also need to try and find a way to balance my life a little more… very difficult though when you’re a parent, and caught up in doing everything you possibly can for your child. (And a mental note: find a way to cope with specialists who leave you feeling like a mess… or find a way to take the emotion out of the task… hmm, difficult either way…)
But for now it’s onwards we forge… there will always be ups and downs… but things will be okay just as long as we can find the twinkle of a star in the night…
And on that note - last week Casdok had a fabulous Meme on her blog that involved placing a message on a bottle and sending it into the blogosphere. I thought it was a great idea, so I mustered some energy and took up the ‘technical’ challenge of getting the message onto the bottle!
Message In A Bottle Meme
1. Compose a message to place in your virtual bottle
2. Right click and Save the graphic below
3. Use a graphics program of your choice to place the message on the picture
4. Post the meme and these rules on your blog
5.Let Mimi know so she can add you to her list of bottles.
My message has been quite significant to me this week, it’s one to remember when times are particularly challenging. (I know the print is small - so for those of you who can’t quite make it out below, the message says: When It’s Dark Enough You Can See The Stars.)
So have a go - your bottle will remain afloat in the blogosphere ocean for all blogernity.
Elissa xx
March 9th, 2008 at 2:48 pm
Speeking of being overwhelmed….Where did you get that picture of me???
I do not get to visit blogs like I used to. Thanks for not foretting about me. I know what it is like to be overwhelmed. Sometimes I just wish we could all stop and be filthy rich for about 2weeks, long enough for a great holiday with the kids. Oh well, it is not happening today.
March 9th, 2008 at 2:52 pm
I am very gald the school is working with you on creating a schedule that is to be less stressful for Jack. I imagine this will take some time to figure out what works. Lots of tweaking and last minute changes may be needed for a while. And that is okay. With our kids I am finding we have to be so flexible. Our schedules can not be as cut and dry as most parents we know. M may wake up too tired to do anything on one day and ready to take on the world the next. I tried for years to fit Maizie into a neat little school schedule and it never did work for her. I still have day dreams that it will work one day!!!! I can hope!
When the schedule is not going as planned just take some deep breaths and make certain you can get out on your own for some fun times with a friend. I have to force myself to do that or I get really depressed and frustrated. I need to feel like I have a life outside of this house! Easier said than done…I know. That is the part of balance you are talking about. Please, if you come up with any pointers in this area let me know. I can still use major help in that area.
As far as rude doctors go…hopefully you will find one you love and can stick with for years. We are hoping we found one in M’s new neurologist. It is so hard to find one that “gets” at least some of what Jack needs. I am so glad you are not wasting any time and have chosen to move right on to the next doctor. Do not waste your time with doctors who belittle you and make you or your child feel bad. I learned that the hard way. Then, I realized I hired them and I can fire them. They are doing a service and if they can not do that service with love and respect then I have no time for them. I realize some people have very few choices for doctors and that is truly tough. I will pray this new specialist is good and takes the time needed to help you and Jack.
I also want to say about the nap melt down…we have had that situation many many times. I had to finally accept that sometimes just getting out of an overly stimulating place is like a nap for M. If she can come home and play with her barbies or watch a little television and just chill it can be as good as a nap. When she was in public school I tried many times to get her to nap because she came home such a mess and so tired. I finally just let her be and play exactly what she needed to play and things went better. Lowering my after school expectations helped. By this I mean…no added activities, no expectations for homework, no chores,etc. She had used up all of her energy at school. It is hard to give advice in this area since our kids are all different. I do know that my expectations played a huge part in M’s melt downs. I had to let go a bit and let her melt down. We also use medications which lessens the length and severity of her melt downs.
Hugs. I hope this week is better for you. I sure do miss your posts but I understand how difficult it is to fit it all in when you have your hands full wtih your little one.
March 9th, 2008 at 3:18 pm
Like Marla we’ve kept hunting for a proper “team” for the boys over the years. There has been some HUGE disasters… like the ABA/IBI therapists, my eldest’s first Dev Ped and toss in the admin of the school when he started, the eldest’s Gr 2 teacher… and the list goes on. Over time, you sort it out… trust me. Right now, it’s not perfect - I’m having behavioural problems with the eldest and we’re off to a Child Psych - but the team that is in place and finally… they and the boys are working together. I just got a new Ped… AMAZING man… He use to be a Dr in England at a Xmas got his papers finished to work here… He’s just… awesome. My old one was… good but didn’t listen to you, he retired at Xmas. We also got a new eye Dr and the little one loves her, eldest was ok with the old one but the little one didn’t like him.
You may want to keep him in school the full days - if he’s enjoying school and has to come home - he’s not going to be happy. You may be surprised at just how quickly he copes. When he comes home at night keep it light - no extra school work - and within his comfort zone, and the schedule right on time. He’ll be tired but he’ll probably adapt within a couple of weeks and if he knows that (a) is going to happen, (b) afterwards… it will probably save on the meltdowns. And don’t worry if he doesn’t eat much or falls asleep early on the sofa. Maybe make some arrangements for an extra snack?? sometime during the day to augment any lost meals. But I would put the routine right at the door so he knows exactly what is going to happen and when and he can take it with him to the kitchen table or wherever he is.
Sheri
March 9th, 2008 at 3:24 pm
Love your WW pic!
I find it unbelieveable to hear that young children and thier parents are still being put throught the wringer. I would have thought by now times would have progressed, so im so sorry to hear you have been so distressed.
I sincerely hope you have found someone who is more understanding and can be more positive.
Love your message in a bottle!
March 9th, 2008 at 3:31 pm
I can totally relate to that picture after the last two weeks around here too… ((HUGS)). I love your quote, it is so true.
March 9th, 2008 at 5:07 pm
Bless your heart! Like FW2, when I think that The Elder (or The Younger for that matter) needs something, they surprise me with what they need. As much as I know that I know what is best for them. Keeping him in full days might be the stretch he needs to make it to another milestone. Of course I’m in LOVE with The Teacher and I know that she can handle any meltdown that comes her way. It doesn’t mean that my heart pounds any less when I get a phone call from the school or a note home saying it was a rough morning. Thanks for sharing and reaching out to us, especially your quote. I think you should reuse it for Success Sunday…
March 9th, 2008 at 9:46 pm
Hugs.
Finding good doctors is so hard. Keeping fingers crossed the next doctor is much better.
March 9th, 2008 at 11:18 pm
Sorry you’re having such a rough week, Elissa… want some company? I found myself reading along with your post and nodding, “me too.” Virtual hugs from a fellow star-watcher (that’s one of my favorite quotes, by the way)
March 10th, 2008 at 12:02 am
I had a feeling your lack of posts meant things weren’t going so well.
The beginning of the school year is so hard. I can understand why you would pick Jack up early 2 days a week. I wish kindergarten was still half a day here; the full-day is really too much for SB. On days he has early dismissal (about once a month, usually for teacher meetings) his behavior is so much better and he is less likely to have a meltdown at pickup time.
The past few years we did speech, OT, and social skills therapies privately after school. I knew that would be too much after a full day, so I canceled these in the fall with the understanding we’d resume later in the year. With the exception of speech (which we now do every other Saturday or Sunday), we still haven’t resumed those other therapies. School is just too taxing and now that he has homework, there’s NO WAY I can add one more expectation. I”m finding it very difficult to get him to do the homework and eat the healthy foods he needs to eat (there’s no time in the morning for that, he refuses to eat them at lunchtime, so what’s left? afterschool!) before bedtime. If it were up to him, he’d be happy to just sit and relax in front of the TV until bedtime. And part of me knows that’s what he needs so I let him do it for awhile. And then we move on to homework and healthy food …. and usually a meltdown or two. It’s exhausting for both of us.
Thanks for sharing that quote. I really like it.
Here’s to an easier week.
Sorry to hear about the doctor’s appointment. I can imaigine how utterly wrung out you must have felt after that. Here’s to finding a better doctor.
March 10th, 2008 at 5:12 am
Hugs to you Elissa. Sometimes we just need a break where no break exists, don’t we?
I so agree with Marla (and most of the other commenters) about hiring and firing doctors. When it comes to our children, they are not the expert. They are an often-flawed consultant. They are there to help and if they are not succeeding, find one that can.
Also, I don’t know if all autistic children are like our Jaylen, but he is strongly affected by, you know, the vibe. We hear words, he reads energy. So looking after your needs would be a crucial way of looking after Jack’s.
Always assuming you have the option.
Beautiful starry night, hey?
March 10th, 2008 at 1:17 pm
I don’t know what you opinion is of medications. I know that some parents refuse to take that route. And others allow it. Our son’s doctor is a Pediatric Psychiatrist. Here in the States, Psychiatrists are fully qualified Medical Doctors before they are Psychiatrists. And, of course, because they are MD’s, they can and do prescribe medication as they feel it is necessary. There was a time when Zach had anxiety issues. As the Doctor became familiar with Zach and began to sort out the various issues that Zach was dealing with (Asbergers, ADD, CAD - childhood anxiety disorder) he slowly (and I repeat, slowly) introduced low levels of medication to minimize the effect of those issues on Zach in everyday environments. He started Zach on Buspar. The NEXT DAY the teachers were calling the house asking what we had done to Zach - he was calm, he was engaged in class, he was responsive to his peers. This with a minimal dose. We’ve never had to increase that particular medication. His ADD was much harder to titrite. Because hidden under his ADD was this CAD. and once the ADD was under control, the CAD stood out. Like I said, I know many parents are against medication. They ask “How can you medicate your child?” They ask,”How can you give your child mind altering drugs?”
My answer to them is that my son is attending the Illinois Mathematics and Science Academy. And he is succeeding. He is happy. And he is a willing participant in his ‘drug’ regimen. He has seen what happens when his med levels are inappropriate. With the last change in meds, after having been on those meds for a week, his response to me when I asked him what he thought of the current program was, “I feel more like a person.”
My son feels more like a person.
March 11th, 2008 at 3:08 am
Thank you all so much for your lovely comments and for sharing such wonderful advice…
I’m trying to look at this week through fresh eyes - I’ve just now got off the phone from changing a couple of appointments so that there is less pressure on our schedule, and I’m trying to take things a little easier all around.
I’m so glad that I’m not alone with all of this… your comments have shown me that, and like I have said before, I am so truly grateful for having such wonderful blogging friends. xx
March 11th, 2008 at 2:08 pm
That picture is priceless! That is totally how my last week has been, I have been busy with school and working and trying to keep up with things at home. I love the message on the bottle idea. I want to create a message as well. Your message is awesome and so true.
March 11th, 2008 at 6:26 pm
Gosh! I was in the same place last week. Sometimes I tell myself, “I can’t do this anymore, it is too hard.” It is tough to get past those times.
March 13th, 2008 at 12:25 am
Just want to send you a hug!! Some weeks are so tough, I was down and out last week too!
Keep searching for balance and when you find it let me know how you did it.