Another sleepless night

One of the biggest issues I hear from other parents of children with Autism is the lack of sleep they get at times. I have been very lucky with K in that he is, in general, a very good sleeper. He always has been. Of course there have been a few times where he has not fallen asleep until the middle of the night. But they are so few they don’t cause me the grief it can cause some parents.
I just haven’t been able to sleep. I have been trying everything I can think of but nothing has worked. I am on a lot of medication, most of which cause drowsiness, but I guess it does the opposite for me. It is so frustrating! I take pills in the morning, that make me drowsy by 2 pm, but I can’t have a nap or I won’t sleep that night. I take more pills at night, but they don’t knock me out at all!
Yes, I have had a lot on my mind with K lately, but things have really started looking up with him so my lack of sleep doesn’t seem to have anything to do with that.
I think a lot of it is Hubby. I am worried about the stress he is under. He always tries to put on a brave face for me but I see what the problems with his work are doing to him. It has been tight for awhile but since they denied him his WSIB and took the two weeks off his cheque we have been struggling to catch up. He keeps telling me not to worry, but with me that is impossible. I feel guilty for not being back at work. If I was back we would have more money. But I can’t go back until I am well. How can I get well if I am not sleeping? How can I sleep when I am worried about Hubby? Feels like a vicious cycle to me.
I go see my therapist today. Maybe he can give me some insight or advice.
I also see my doctor today so I will ask when would be the best times to take my meds to make sure they help me sleep. Or maybe he will prescribe a sleeping aid. Anything to give me at least 4 hours straight! I would be more than happy with that!
But, looking on the bright side, it does give me more blogging time and a chance to Tweet with my “UK Mums”. 🙂

P.

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WTH is a “Beeya?”

K is non-verbal. That means he doesn’t communicate using words. It doesn’t mean he makes no sounds. He has always babbled. (See “Communication”)
His new “word” is “Beeya”. That is what it sounds like. I wouldn’t pay much attention except that he says it over and over, all the time! You make eye contact with him, he says it. Sitting alone on the couch, he’ll say it. There is no specific reason or situation that would make it make sense!
Hubby jokes that it means beer. K likes beer. We have caught him on numerous occasions drinking from one of his dads, or pouring some in his juice cup, or even grabbing one out of the fridge and opening it!
I would love to know what it means but, as with all of K’s “words”, I don’t think I will.

P.

K’s new respite

A few posts ago I blogged about K losing his respite due to his behaviour (see “Losing Respite”). After a consultation with his Behavioural Therapist, she put a rush on finding him a new place. I was not feeling optimistic thinking I would have to wait for months. Two days after her consultation I got a phone call from a respite place that takes adults. I knew that things would change when he turned 18 but I didn’t think it would happen so quickly! We made arrangements for a tour. A couple of days later I get a call from ANOTHER respite place! We made arrangements for a tour there too.
Hubby and I went to tour the first place yesterday. The first thing we noticed was that it was right across the street from a big park. The place itself is fully enclosed by fences. We went inside to meet the supervisor, a very nice man. He asked us questions about K and the problems we had at his old respite place. He assured us that, although they do have an elevator, it is locked and can only be opened by staff or the few permanent residents they have. So K can sit there pushing the buttons all day and it won’t open. We also noticed wheelchair buttons on every door, which is to be expected in a place like this, and we told him he may have trouble keeping K from pushing the buttons to open the doors. He said they were used to it, as another respite client does the same thing. But he assured us there were alarms at every door and they were always kept locked. We then went on the tour.
The place was going through some renovations, inside and out, so there were some places we couldn’t go but what we did see really impressed us. Some rooms have one bed, some have two. They have 2 common areas where residents can hang out, play games, or just watch TV. When we walked into the eating area we met one of the residents. She was a Chinese lady with Down Syndrome. I would say she was probably in her 40s. She was all excited because she had found her Diet Coke lol. There were 2 staff in there with her.
The supervisor told me they do have a higher amount of male staff, which would work out perfect because K seems to respond and listen to men more than women.
The next step is to have a dinner visit with K. We drop him off for an hour while he has dinner with them. They ask us to sit in the other room in case he gets upset (which he will because he won’t know anyone) but they need to see what he is like without his parents around. After that we can start booking visits.
I told the supervisor about us seeing another place and Hubby asked if we can use both places, as a joke, but apparently we CAN use both, but the hours are shared. This is wonderful news because if we really needed a certain date and one place was full, we could use the other place! Hopefully they won’t both be full, lol!
We see the other place at the end of the month. After seeing the first place I am now very optimistic! Things are moving now! It may not be much longer before he gets permanent care.
I want to thank everyone for your prayers and positive thoughts! Keep them coming!

P.

Adults with Autism – from their perspective

I had asked if anyone would like me to do a Q&A on my blog because K’s situation gets so many questions. I was asked by one of my best Twitter friends, Rob (a high functioning Autistic), if I could write a blog about adults with Autism. I am not an expert, and K may be an adult with Autism, but his Down Syndrome and severe developmental delay makes his situation different. I asked Rob if he would write a few things about being an adult living with Autism. The following is from him. Thank you for being such a good friend Rob!

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Before we begin please check out the blog he wrote about growing up with Autism. http://lilredman.posterous.com/my-life-growing-up-23647

Hi! I’m Rob and I am 33 years old. I have lots of friends and people who love me. I also have Autism. I found out about my Autism when I was 21 but was diagnosed when I was 13. My step-mother explained what is was and why I was seeing a therapist and on meds. I didn’t really understand what it was.
Sometimes I act a little younger than I am, but I’m not stupid!
Sometimes I still sleep with a stuffed animal.
Sometimes it is hard to remember things, but I always do the best I can. I just don’t like being judged for the way I am.
I went to Vista Vocational & Life Skills Center in Westbrook, CT. http://www.vistavocational.org. They teach about how to live on our own by learning how to cook, pay bills, do laundry, and how to get and keep a job. Sometimes it is hard to get a job because employers would rather hire someone else. Without a job it is hard to find a place to live.
I am high-functioning so I can get a job, if someone would hire me, then get my own place. We can fall in love, like I did with my fiancĂ©, Sumner. I can’t wait until she is finished school and we can be together. We plan on having children and raising a family. Not all people with Autism can do this, but the high-functioning ones can.
Thank you for hearing my story.

Rob is on Twitter. @lil_red_man. Please follow him. He has become a very dear friend to me, as has his fiancé, Sumner @lilsouthernlady. I call him my little bro because he will always be like family to me.

Happy Birthday K

Today is K’s 18th birthday. Usually this is a special time for boys. They become adults. They have a big party, tons of friends, lots of music, lots of food. K’s birthdays have always been completely different. I mean different from other people’s, his birthdays are all exactly the same.

Gifts: Just like Christmas, K’s birthday has no significance to him. As far as he is concerned, it’s a regular day but his favourite toy works and he has a few new ones. It works because we buy him a new one every time. He only has a few that we KNOW for sure he likes, so why mess with a good thing? Any new toys he gets from grandparents, uncles, aunts, etc usually end up in his toy box. Very seldom will he play with the new toys, but when he does he will either like it or hate it. It’s all trial and error with K.

Parties: K doesn’t like having a lot of people around. We avoid going to crowded places as much as possible to avoid him getting upset. Anytime we have people over he will sit on the landing of the stairs; his “perch”, and play quietly until they leave. If we are having family over for holidays it is almost the same, except he will interact more, as they are familiar to him. And they are all used to him. Recently I had to explain K to my 5 year old niece, as he had grabbed some chips from her hand and hurt her. I explained it to her as best I could, but she doesn’t go near him anymore. Not many of the children interact with him. I think he can come off as scary sometimes. On his birthday we usually have the family over. This would be my side. My grandmother, mother, bro, sis, bro in law, sis in law and a niece and nephew. They came today. We had a great time. S sat in on the conversation and cracked a few jokes. He is only a year and a half older than K! A part of me was screaming “Why can’t K sit and chat with us too?” K sat on his perch, playing with his “now working” toy. He got new toys and clothes. No interest in the puzzle yet, but I know he likes them.

Singing: Aunt made a cake, but we didn’t sing. We spoke “Happy Birthday to you”. My brother in law joked that we were doing the birthday song William Shatner style! Everyone usually leaves by 8 because that is when K has his bath and gets ready for bed.

It’s almost 10 pm. B is playing video games, S is spending time with his girlfriend, and K is in bed, fast asleep. So happy he has his favourite soft singing puppy back.
Sleep well angel. Happy Birthday.

P.

I lost it today

As parents of children with special needs I like to think we have more patience, strength and resilience than other parents do. We have to. Not only do we have to deal with our children’s disabilities, but we also have to deal with the idiots and ignoramuses that also always seem to be a part of our lives. It’s hard for us to deal with, even on the best of days. This didn’t start out to be the best of days.
I woke up at 8 to the sound of banging and cracking coming from K’s room. I opened the door and he was sitting on his bed with his side table in pieces on the floor beside him. He had destroyed the whole thing with his bare hands. I brought him downstairs to change and dress him, walked into the living room and stopped in my tracks. B had been up late the night before watching tv but had raided the kitchen. There was apple sauce containers and pudding containers, he had a can of spaghetti and left the bowl there. On top of all that, the smell of air freshener was overwhelming. The empty can was also there. He had sprayed it all over the couch to a point where there was a wet spot. I walked into the kitchen and a mess greeted me there too. I felt the anger and frustration building in me until it just exploded into tears. Hubby had gone to get us a coffee and he came back to a hysterical, crying wife. As soon as I told him what happened he went and woke both boys up. I had hit my “angry” point and just started screaming at them. I even started clapping at them, congratulating them on successfully driving me crazy. That was when Hubby told me to go upstairs, and try to calm down. So I’m upstairs with my coffee and my phone trying to calm down. It doesn’t seem to be working. I hear them downstairs cleaning now. And all I feel is guilt. There is no reason at all for me to feel this way. Did K mean to break his table? Who knows? Maybe he thought it was fun. But the other 2 are old enough to do what is expected of them. Not to leave it all for the next person (me) to come along. For so long I allowed their behaviour to continue because I always felt bad with what they have to deal with. Maybe I babied them a little too much. Maybe I let them get away with too much. I can “maybe” until the cows come home but it doesn’t change the fact that they should be treating me with a little more respect. They should be taking more responsibility for their own things. They should do what is expected of them, no questions asked or whining accepted.
I hate getting to that point where I am so angry all I can do is yell. I try so hard to keep my feelings at bay, especially around the kids, but as they get older I am finding it harder and harder.
I know it’s not easy to admit, but please let me know if any of you have days like this. Not even 9 am and I feel like I could just stay all day in bed just to escape my life for awhile. But I can’t escape. I have to persevere.

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Sibling rivalry – ADHD style

B turns 14 this year. He has had to deal with having a disabled older brother his whole life. While S has always been a very supportive part of K’s life, B has remained indifferent towards him. I always chalk it up to the age difference, in more ways than one. K is 4 years older than B, but acts like he is much younger. I have told B on many occasions that he has to take on a “big brother” role with K. I don’t think he really understands what that entails. S started watching K on his own when he was 14 but I don’t think I can expect the same with B. His ADHD makes it hard for me to leave them alone together, as I am never sure if B is actually watching him. He gets distracted so easily and I need his mind to be on K. I always feel like this is unfair to him. He has always felt that K gets all the attention and no matter how hard I try to explain about K’s disability B never seems to understand.
Sometimes if K is fighting with me, B will come to my rescue, but he will slap K away. I don’t know if this is a good or bad thing. It stops K from hurting me, but I don’t want B to take on a “bully” role with him. At 14, B is already 6 ft 3 in and can be very intimidating. K must think so, because his interactions with B are next to nothing.
I can only imagine how tough it is for B. I try to do something special with him when K is at respite, and hopefully that will start again soon. B looks forward to this time because he is the center of attention for a week. He gets what he wants for dinner, we go to the movies, whatever he wants to do. That’s the only thing I can do for him right now.
I would love some feedback about other siblings and how they deal with having a disabled brother or sister.

P.