Joy in the Journey

“Therefore will I give thanks unto thee, O Lord, among the heathen, and sing praises unto thy name.” 

Psalms 18:49

In church we were talking about gratitude and how important it is to be grateful when you are going through trials, and then I came home to find that a friend had tagged me so I would read an article about the 4 things that you can do that will make you happy. Being grateful happened to be one of them. The article said that even if you cannot find anything, as long as you are actively searching for something to be grateful for, it changes our brain chemistry.

I remember learning this lesson of gratitude years ago when I had broken my leg. I was working as a live-in Nanny at the time and my boss was less than happy that I was living there, eating her food and unable to care for her child. The growth I experienced and the things I learned at the time made me SO grateful for the experience. I never wanted to go through it again, but I was grateful.

My life has moved on since then, and much bigger problems have arisen. My husband deployed to Iraq twice for extended periods, my son was diagnosed and lives with Autism, I have a spine that didn’t form correctly and can at times cause extreme pain and has resulted in two surgeries. I’ve forgotten the lesson I learned so long ago. Yet how can I be grateful for these experiences?

My husband’s first deployment, he left on our first wedding anniversary and he was gone for 16 months. The second one, I was pregnant with R and she was born during the deployment. I developed anxiety attacks during his first deployment. What have I to be grateful for?

Frequently you hear we need to show gratitude to our service members for their service. And we should! Our country owes them a debt of gratitude. But until I was a wife and a mother with a spouse off fighting in a war, I had never understood or even thought of the incredible sacrifices that the families of the military make. I am in total awe of so many of the ones I have met and known. The resilience and fortitude they have taught me have been so valuable to me.

I also had the opportunity to work with a Non-Profit that worked with families and children of Iraq, (FUTURE). When several of the women found out that my husband had been over there, they gave me a big hug and said, Thank you! Thank you for giving up your time with your husband to set us free!” Now, wether or not we should or should not have been in Iraq is a whole other discussion. But for me, on that day, it brought healing to my soul. It hadn’t been easy for my husband and his experiences there, nor had it been for me.

My son has Autism, and frequently it is not a gift. There have been times of extreme hurt, frustration, and being at the end of my rope. I can only imagine just how hard it has been for him too. What have I to be grateful for?

I’m beyond grateful for the amazing people this has brought and continues to bring into our lives. They enrich our lives SO much. We would never have met them if it hadn’t been for this Autism and other health issues of his in our lives. It has also opened a window into the walks of life of so many others. I can understand and have compassion in ways it would never have been possible before. It has truly broadened my horizons.

My spine has made me slow down, it has made me cry and scream in pain. It has made me truly helpless at times where I could not care for myself, let alone my family. What have I to be grateful for?

I’ve come to be grateful for the great compassion and willingness to serve others when there is a need, by my fellow man. It has made me grateful that I have a body at all, and that despite its challenges, but for the grace of God, things could be far worse.

Above all, these experiences have taught me just how much God and my Savior love me. How they are very aware of the emotional, physical, spiritual, and financial needs I have. And that, above all, I can be grateful.

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Pushing Acrophobia Boundaries 

While on a mini vacation this summer we visited Olympia National Forest and went up to Hurricane Ridge. It’s really high up and D has a HUGE fear of heights (Acrophobia). I have some sympathy as I am not hugely comfortable with them myself. We could have let him dictate where we go and what we did. It did to some degree as we didn’t make the 5-mile trek to the Dungeness Lighthouse that we wanted to see earlier in the day as he just can’t handle that much walking.

We have to find balance, so it was no to hiking and yes to pushing the fear of heights. We know that heights terrify him so we didn’t push him too much. From the moment he got out of the car he was hesitant to move anywhere but we wanted him to go into the Ranger Station with us. After touring the station I asked him to come outside for just a minute and take a look.img_2807He did it! This is after he took his look. He’s hugging the side of the building, but he did it!

If we let it, Autism, Acrophobia, and all his accompanying issues could completely control our lives. And to be honest, sometimes it does. But we will keep pushing the envelope, trying to make him feel more secure in a world that makes him feel anything but secure.

6 words that will end picky eating

I keep seeing articles that say things like, “6 Words That Will End Picky Eating”. Sometimes they make me laugh at the naïveté of the person writing them. Sometimes they make me mad. Because for about a second I buy into it and think what am I doing wrong?

I think after seeing these articles, “Are you kidding me? Have you met an Autistic child?” There are no magic 6 words that will cure picky eating. Some kids with Autism will actually starve themselves rather than eat a food that doesn’t smell, taste, feel or look right. They literally end up in the hospital with feeding tubes. Remember when your 3-year-old wouldn’t eat their snack because it broke and it was no longer whole? Try that with a 10-year-old who is 100 lbs and only has 3-6 foods they will eat, which is actually pretty common with children with Autism. With a lot of work, heartache, bribing, and tears, you can add more items to their diet but 6 words ain’t going to cut it.

Maybe it’s different with children without special needs. But it doesn’t seem so in all my years of working with children. It may not be as difficult as it is for a child with Autism or Sensory Issues, to get them to eat something new or different but 6 words aren’t going to cut it.

Medications- They Work For Some 

img_2798I’m in multiple Special Needs groups online and spend part of my time trying to help parents find resources to help them. Medications, supplements, and therapies are a frequent topic of discussion because we are all trying to find something that works for our child.

Medications are a tricky issue. As a parent and advocate, I hesitate to recommend a medication or treatment. I’m happy to share with you what our experiences have been and tell you what has worked for us, but I’m not a doctor and usually, neither is anyone else in these groups.

img_2797In these groups, you have parents who don’t think you should ever be giving your child medication. I disagree, but I feel you have a right to make that decision. Then there the parents who debate over which medication/treatment is best for which issue. Here’s the thing- What works for one person doesn’t mean it will work for the next person. We all have different chemical makeup and different medications work differently for different people. Also, when you have tried one medication, or two, it doesn’t mean the next one won’t work for you. It takes a lot of patience sometimes to find the right medication, supplement or therapy that works for you or your child. I know this from hard fought experience. There are several types of medication D has tried almost (or every) medication there is for that ailment before finding one that works. It has been a LONG and FRUSTRATING process. And when I talk about medications like this, this is not to say we haven’t tried most of the alternative treatments out there. Chances are we have. Sometimes we find one that works, other times it’s like the medication and we go through trying everything.

I guess this blog post is really just about being cautious about where you get your information from. Make sure it’s a reputable source. Make sure you are working with a Doctor or Naturopath who has spent years of their lives studying so they have the knowledge to help you.

Things To Think About Before Getting a Service Dog

D has a Service Dog (Charlie),img_0563 and we get lots of questions about him. We love helping people understand about Service Dogs and think about if it would be a good fit for them. So here’s a list of things I like to bring up for people to consider.

  • Do you like dogs? If the answer is no, then a Service Dog really isn’t a good choice for you.
  • Are you comfortable with everyone knowing something is wrong? If you are in a wheelchair or use a walker it is obvious that something is going on. But for people like D who have hidden disabilities most of the time, this is like walking around with a neon sign blinking, “Look at us! There’s something wrong with us.” That really took some getting used to on our part.
  • You can self-train a service dog. But should you? Only you can answer that. For me, I knew that that wasn’t possible as I was already using all my energies caring for my family. You need to be dedicated and be able to be firm with the dog and have the extra time to devote to training.
  • An Emotional Support Dog is not a Service Dog and you cannot just place a vest on a dog and call it a Service Dog. Both an Emotional Support Dog and a Service Dog need a doctor’s prescription. A Service Dog needs to be able to pass a Public Access test to ensure he/she can behave themselves in public. They also need to be trained in specific tasks to perform, to qualify as a Service Dog.
  • Adding a Service Dog is like adding a new child to your family. Yes, it’s trained (and frankly I think that’s the best way to get a dog!), but you need to be able to maintain training, exercise, doctor’s visits, socializing, feeding. img_1406
  • Service Dogs are not pets. While they can have time off, (Frequently when they are at home or have their vest off.) Service Dogs when working should usually not be petted. This distracts them from the job that they are trying to do. Even when they appear to be off duty you should ask if you can pet them because Service Dogs are not required to wear a vest when working or at any other time. We generally have them wear their vests to show that they are Service Dogs so we don’t have to answer as many questions.
  • A Service Dog is still a dog. They are highly trained. But an occasional butterfly or ball can distract them once in a while. They aren’t robots. Generally, once they are told to leave it be they can be called back to their jobs.
  • Do your research. Not all Service Dog organizations are legitimate. The only other Service Dog Training Organization I personally recommend besides the one we used, is 4 Paws for Ability as I have seen the dogs they have placed in action.img_1841

Charlie, our favorite Service Dog came from Arctic Paws for Service a 501c3 that feels that Service Dogs should not be out of the reach of those who need it financially and does everything to cut their costs. If you would like to help them support other families who need a dog, please consider donating.

Wanted: Mary Poppins

img_2794We want help. We NEED help with our special needs children.

Medicaid provides ways for us to be able to receive help with our children. It does this through getting them out in the community so they aren’t just stuck at home, giving us a break through respite care, and nursing services for those whose health is such that it requires nursing. This provides us with a much-needed break so our children can stay at home with us and not be put in an institution.  This is called a Medicaid Waiver. As a side note, this is far more cost effective for the general public to subsidize as we provide the bulk of the care for the disabled through Medicaid, then to pay for institutionalization.

In some ways, it’s like finding and having a Nanny come in and care for your child. For me, it is especially difficult as I have been on both sides. I worked as a Nanny for 9 years. I know what it is like from their side. I’m always second guessing what I’m asking them to do.img_2795

It’s a whole other ballgame when you are on the other side of things as the employer. These caregivers have goals they are supposed to be working on with your child. They are focused just on this child. Which creates a unique problem if you have more than one child. To truly get “respite”, you need a break from ALL children. So you have to find someone else to watch your other children at the same time which makes it weird having two people who probably don’t know each other watching your children in the same house. So you frequently don’t get any “respite” because you don’t use it for that. Instead, you spend time with your other children. And then you feel guilty because you haven’t spent one on one time with your child with Special Needs. Or you have two disabled children who each have to have their own person, so you need two people who work well together. This is just the beginning of the issues.

 

This is frequently a very low paying job and many agencies offer little to no training unless you are getting nursing care. These two issues result in a huge turnover of staff. A lot of our children have a hard time with transitions and change, this just makes the trauma worse for them. Many of these children have mild to severe behavioral issues, which can be anything from elopement, self-injurious behavior, or injurious behavior towards others to just name a few. Not having training creates an unsafe environment for the caregiver and the child and it isn’t fair for either of them.

 

And then there is the issue of them being in your space all the time. Your bathrooms or house isn’t clean because you’ve been sick or just too busy? Disagreements with your spouse? A bad day where you just can’t seem to be nice to anyone? They see it all. It’s embarrassing, it’s frustrating.

Ideally, you are looking for someone who fits in well with your family. Someone that isn’t too passive with your child and can hold firm but be kind. Someone who is willing and open to learning new things since they didn’t receive training, you are going to have to train them. Someone who is reliable. You wouldn’t believe how hard this is to find. This last go round of us trying to find someone to work with D, they would show up for the interview, say they want the job and never show up again. D got to the point where he didn’t want to meet anyone else or have anyone in our home. You want someone your child feels safe and secure with. Really, you want Mary Poppins.

I don’t have any answers to solve all the problems. I do know that Medicaid provides a very important safety net for families like mine. Otherwise, we face burnout which isn’t good for us, our child, our family or community. It isn’t perfect and there are many tweaks that could be made to make it better. But as families we are very grateful and will keep trying to find a way to make the system work.

How to let the new teacher know about your child

New school year, new teacher. Your child has an IEP but does all your child’s teachers know that? What about Music, Art, and Gym teachers? We are starting our Middle School adventures this year. How does that even work with him changing teachers all day? 

You have this beautiful, wonderful child who can sometimes be misunderstood. How can you be proactive without becoming one of “those” Moms?

Something that I was introduced to last year was a child’s resume to introduce your child to the teacher. It has your child’s name and picture at the top. After that, you outline your child’s strengths and weaknesses. If your child gets upset easily or has certain triggers that will set him off- How do you de-escalate them? Special interests that will help them redirect them when they get upset or distracted.

This way it should cut down on misunderstandings, talks with the Teacher, or (gasp) Principal. Awareness of the issues as we know can make a world of a difference.