Monthly Archives: April 2014

Help, my mind is lost!

I have had a lot on my mind recently. After Silas’ checkup with his pediatrician her comments really stuck with me. She said that ABA therapy is great but we should get him back into speech and occupational therapy. We had to discontinue those services about 9 months ago when we started ABA due to it being nearly impossible for us to make a schedule that worked.

My mind has been returning to those comments quite often. I do so desperately want to get Silas back into those therapies because I know how much they can help him. Honestly, I just do not see being able to be away from work that much since I already leave two hours early every day so that we can make it home to do his ABA therapy.

I do have another option though. There is a school in our area that offers preschool services for children with developmental delays. They provide speech, occupational therapy, hearing, vision, and so much more. I went through the whole evaluation process with Silas and have a 17 page in-depth report. They already offered services to Silas. There is a problem with this too though. He would go to school from 9:00-12:00 or 1:00-4:00. The school district could provide busing for him but someone would have to be home when he left and returned, obviously. This comes with another problem. Daddy goes to college classes, I work 15 minutes away, and Silas goes to daycare 15 minutes away.

I got the bright idea, why don’t they just bus Silas from daycare! Nope, that’s out of the school district. There is another school in the district where he goes to daycare which provides the same services. Guess what…can’t go there because we don’t live in that school district. Can’t move into that district because the housing costs too much. We just can’t seem to win.

I would be willing to work nights and not sleep so that Silas could get the services he needs. Whatever sacrifices I had to make I would. All of this is stuff I think about all the damn time. Once this starts going across my mind I start thinking about how if we had close friends they could help. Then I remember that we do not have any close friends. Our life pretty much only revolves around Silas. Not that that is a bad thing, just kind of depressing.

Living in a spectrum world has many ups but it’s the downs that are hardest. It is so hard to talk to people who are not in our situation about our situation because it seems like whining. I do not want anyone to give me “I’m sorry” or “I wish I could help” because that is not what I’m looking for; which will be how it seems. Pity will not help us. So what would help us? No clue.

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Giving Medicine

Giving my child medicine almost seems impossible most of the time. Until recently, I have had a full on battle royal on my hands. Medication time was like Ronda Rousy vs. Georges St-Pierre. If there was a way to escape my attempts Silas could find it. It did not matter if I was holding him down, sitting on him, or anything else. You could bet that the majority of the medicine I was trying to give him was not going into his mouth. I did not even attempt at using a spoon or that nonsense cup that comes with most medicines. Nope, a syringe was the tactic suggested by his pediatrician the first time I mentioned giving him medicine was a problem.

This worked for a while but now that Silas is older, bigger, and much stronger I have now run into issues again. I am not a big woman. At 3 ½ Silas is already over half my size (thanks daddy!). My futile attempts at administering medicine have gone on to be unsuccessful.

To combat this, I started searching the Internet for other options. I have found the perfect one; mixing the medicine with a drink. This both covers the taste of the medicine and eliminates the syringe. Why the hell didn’t I think of that myself?? Now, medicine time is a breeze. There is always a drink that a medicine can be mixed with to cover the taste. If you have a child you are having trouble giving medicine to I suggest trying this. It has worked wonders for us!

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Quit wiping your snot on me

Identifying when a child with autism is sick can sometimes prove to be difficult. Unless the child is verbal or knows how to communicate he or she does not feel well or what hurts many parents miss the clues. Silas does not communicate with me or Robert when he is not feeling well. The only time I am able to tell when he is like this is when I am actually able to see symptoms or he acts differently.

Some of the visible symptoms include:

  • obvious ones like vomiting and rashes
  • lethargy
  • lessened appetite
  • increased/decreased desire to cuddle
  • increased/decreased stemming behaviors such as flapping or spinning
  • changes in routine
  • aggression
  • much more

It takes time to be able to recognize these changes in your child and what they mean. Often these changes do not indicate sickness but rather stress or anxiety. It sometimes feels like a riddle. I find out all of the clues and then have to try to figure out what the correct answer is by guessing and trying different solutions.

My sweet man started to get what seemed like a cold last week. Snotty nose and dry cough were my indicators. I figured I would let his immune system do its job and waited to see if things changed. Within three days he was Amazon River style flowing snot everywhere, nasty wet coughs, waking up more during the middle of the night, laying around, and being a big whiny pain in the butt. I took him to the doctor and she told me he was right on the brink of having bronchitis. Medicine was prescribed and off we went to fill it at Walmart.

It was obvious Silas did not feel well but he insisted on letting every person in Walmart know that too. As we were standing in line at the pharmacy he decided to go berserk. Screaming, crying, and trying to rip off his shoes. I’m standing there baffled trying to figure out what in the world is going on. One minute he was fine then all of a sudden, boom! I started trying to diagnose exactly what his issue was before someone called child services on me.

I had just picked him up out of the shopping cart when the woman behind me in line decided to throw in her two cents on the situation. By this time I am already about to explode because I am annoyed and still in my ABUs so I am very hot. Plus, Silas is no feather. The woman says to my back, “As a member of the military you would think you would have more control over your kid and be respectful towards other’s wishes.”

If I had not had Silas in my arms and was not in uniform I am pretty certain I would have just turned around and punched this lady in the throat. But, my uniform dictates (since I respect it) that I maintain a proper military bearing at all times; and I am a mother so I am not going to make a scene in front of my child like my mind wanted me to. My initial thought process was (pardon my language), “Who the fuck does this bitch think she is? She has no idea what is going on in this situation right now. Respect other’s wishes? What wishes? Does she not realize everything I have given up for people like her?!”

Instead of saying the things that ran through my mind in the few seconds that passed or going ape shit on her in front of everyone, I chose to respond in the calmest manner I could. I politely turned around to her and said, “Unless you want me to be disrespectful I suggest you mind your own business.” She looked like she wanted to say something else but I think my death stare deterred her.

People think that others want and need their advice for everything and they must voice their opinions and disdain. Well, those words are wasted on me. If I wanted those things I would ask for them. Honestly, I could not give two shits what other people think about how I should raise my child. It is none of their business. By no means will my child starve or be abused; but he will try things (though he does not like new or different foods) and he will wait at least an hour before being supplemented and if he acts a fool he will be disciplined accordingly. He is learning to be polite and respectful and I expect him to be like that towards everyone. Just because someone did ‘this’ and ‘that’ which worked for their child does not mean it will work for mine. I have learned that things must be altered in a way that Silas can understand them.

Any who, now I am rambling and it is time for bed. To be continued…

Routines and Resistance to Change

Yesterday I got the bright idea to rearrange basically the whole house to rock Silas’ world, again. I do this every so often to remind him that things are not always under his control. Sometimes things will change or his routine will get out of whack and we must find ways to cope with those changes. The last few times I did this it took a while for him to adjust. We worked on ways for him to adjust and accept the changes for what they were, a temporary bump in the road.

Last night when I showed Silas his room we just paused in the doorway taking it all in. It was as if I could almost see the wheels turning in his mind. I explained to him that it was time for a change and he would adjust to it in no time. We spent time going through the changes and learning where things were now located. The one major thing that he had an issue with is that I took his changing table down. I explained that he is too big for me to put him up on it and he needs to learn how to use the potty. He just smiled at me, like yeah right! Other than that he didn’t mind the change at all. Wow!

Some of you may be wondering why I am making a big deal about this…if you have a child with ASD or know someone that is then take a moment to read this. It is very informative and I wish I would have known this a long time ago. 

 

Many people with an ASD have a strong preference for routines and sameness. Routines often serve an important function – they introduce order, structure and predictability and help to manage anxiety. Because of this, it can be very distressing if a person’s routine is disrupted.

Sometimes minor changes such as moving between two activities can be distressing; for others big events like holidays, birthdays or Christmas, which create change and upheaval, can cause anxiety. Unexpected changes are often most difficult to deal with. 

Some people with an ASD have daily timetables so that they know what is going to happen, when. However, the need for routine and sameness can extend beyond this. You might see:

  • changes to the physical environment (such as the layout of furniture in a room), or the presence of new people or absence of familiar ones, being difficult to manage
  • rigid preferences about things like food (only eating food of a certain colour), clothing (only wearing clothes made from specific fabrics), or everyday objects (only using particular types of soap or brands of toilet paper)
  • a need for routine around daily activities such as meals or bedtime. Routines can become almost ritualistic in nature, having to be followed precisely with attention paid to the tiniest details
  • verbal rituals, with a person repeatedly asking the same questions and needing a specific answer
  • compulsive behaviour, for example a person might be constantly washing their hands or checking locks. This does not necessarily mean they have obsessive compulsive disorder (OCD) but if you are concerned about this, speak to your GP in the first instance. 

People’s dependence on routines can increase during times of change, stress or illness and may even become more dominant or elaborate at these times (Attwood, 1998). Dependence on routines may increase or re-emerge during adolescence.

Routines can have a profound effect on the lives of people with an ASD, their family and carers, but it is possible to make a person less reliant on them.

 

THAT is why I do things to rock the ritualistic world that Silas lives in. He is set in his routines. We go the same way to and from daycare; he won’t eat new foods; we have a set routine for eating, bathing, and bedtime; he repeats things a thousand times until it is answered or repeated just the way he wants; and so much more. I do NOT want to live in this world with him for forever and I do NOT want him to be stuck in needing this world. Granted he is still very young but if I am able to break these habits now then that is much better for all of us. We all have our routines which can be healthy, but not if we need those routines.

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