The other day I was doing my self care walk (AKA, the Daily Trudge) down by the lake near our house when a woman approached me and asked for help. She was from Missouri and was camping with her husband. We had thick Texas fog that morning and, under fog cover, someone had dumped six puppies right next to her travel trailer. The Missouri couple was leaving that morning, couldn’t take them, and they were worried about how the puppies would survive.
My husband and I have been talking about getting a dog for several months now. We thought it would be good for our son, Kai, who is six years old and has special needs. Kai is low functioning and disgnosed with Autism, PVL (periventricular leukomalacia), duplicate chromosome 16, sensory processing disorder, and developmental delays across the board. Animals always seem to gravitate toward Kai. It is like they know that he is different and they seem to take extra care with him. Kai generally ignores them but if they hang around long enough they might get rewarded with a brief touch or stroke.
Our daughter, who is eight years old and neurotypical, likes animals but is also somewhat nervous around them. She would benefit from having a dog, too.
So I called my husband and adult son and asked them to come down and have a look. I also saw some women fishing nearby and invited them to come check out the puppies and see if they wanted one.
The women took two of the puppies, our adult daughter and son-in-law took two to their house and suddenly, with little to no preparation, we had not one but two puppies. On my husband’s birthday.
Thus begins the saga of Penny and Gus.
I have been trying to write this post for three days. Why haven’t I finished it yet?
Penny and Gus.
Because it’s important, when you are a stay-at-home mom with a child with special needs, a grandchild under the age of one living in the house and a still sick from a long term illness but recovering husband to add in untrained puppies.
And yet…
Penny and Gus are a catahoula and lab mix. This means they are smart, quick to learn, loyal, faithful, and good with small children. And catahoulas are used to herd cows. Which means that they can be taught to assist Kai.
Having looked in the past at organizations that provide service dogs, I know that I may be choosing a harder road than letting the professionals handle it. But it also doesn’t come with the fifteen thousand dollar price tag. These organizations suggest that you do fundraisers to get this money. I know that they probably provide a valuable service and all of the training and care are probably very expensive, so that amount, on some level makes sense.
We are learning how to train them from YouTube. They were given flea pills, spray and baths the first day. The second day we brought them to the vet. They’ve had shots, nails trimmed and they have been deemed healthy. Soon we will have puppy classes to train both them and us. And we will have them fixed. This is costing several hundred dollars but nowhere near the price of a formal service dog organization. The dogs may not be trained to their fullest potential. But they will be trained for what we will need them for with Kai. Kai will have their friendship and bond with them. It will help ease his anxiety to have pets near. They will hopefully be trained to stay with him if he elopes and keep him out of water and off of the road. And for us, that is enough. If someone needed service dogs that detected seizures coming on or to act in medical situations, I wouldn’t recommend the do-it-yourself method. But, for us, it will work just fine.
You know the old adage, when the universe hands you lemons, make lemonade? The universe just handed us the perfect puppies.
One of the interesting things about having a son with developmental delays is that he is on a different timeline than typical kids. My son, Kai, is six years old (seven next month, it’s going too fast, my baby!) and has a bunch of diagnoses including PVL (periventricular leukomalacia), duplicate chromosome 16, autism, sensory processing disorder and developmental delays in every area.
Depending on who you ask and if Kai felt like performing on the day of the test, developmentally Kai is between 16-36 months. This means that he has the speech of about a 16 month old and the gross motor skills of a 36 month old and everything else falls somewhere in between.
But these are just averages. Kai is constantly blossoming in different areas at different times. We have been enjoying his latest achievement this last couple of weeks. Kai has discovered cause and effect. But if you don’t know what that is or how to recognize it, it could possibly drive you absolutely mad.
Kai has been endlessly turning the light switches on and off.
The light’s on. It’s off. It’s on. It’s off. Can you imagine getting your child ready for a bath and having him stop before getting in, naked and ready to be bathed, to turn the light switch on and off about 15 times?
This could easily be misinterpreted as “bad” behavior. Something to be corrected. But his dad and I are absolutely filled with joy every time he does it. We laugh and grin at each other like idiots. Our incredible son has discovered cause and effect!
What is cause and effect?
Cause and effect examples are all around us. It is simply what happens (the effect) when something makes it happen (the cause).
Developmentally, cause and effect is something an infant starts to experiment with at about 8 months old. The child may bang a spoon on their highchair tray, hear a sound and then bang it again to see if it happens again. Then, from about 9-17 months, the child begins to experiment to see if it happens repeatedly. Have you ever gotten into a situation with a toddler where they drop their spoon on the floor and you pick it up and give it back to them only to have them drop it again? They watch you to see if you are going to pick it up again, don’t they? This seemingly silly game is the child experimenting with cause and effect. They are wondering if it will work again. And again. And again.
At around 18 months of age, the experimenting continues. The child wonders if they can achieve the effect by doing it in a different way or in a different place. First they try to knock over blocks by kicking them. Then they rebuild and try to knock them over with their hand. The child finds out, hey, they still fall! Cause and effect.
At 36 months this is usually locked in and the child can verbally predict what could happen with assistance. Perhaps an if/then presentation will prompt them to show what they know. For example, a teacher may say, “If I knock this cup of water over, then what could happen?” The child begins to predict the effect. They may say, “The water will spill!”
Want more examples? Take a look at this terrific resource:
Kai is at the 18 month old stage of cause and effect. He is experimenting with all of the light switches in the house. On, off. On, off. Then he goes to a different one. On, off. On, off. Hey, it works for ALL of the switches!!!
We are so proud of Kai for reaching this milestone. Because he is at about 16 months old developmentally for speech, the next stage where he can verbally predict what could happen if a cause and effect situation is presented to him will probably take a lot longer. But that won’t mean he doesn’t understand it well. It will just mean that he can’t verbalize it yet.
It is very easy to misunderstand the intentions and thought processes of a child with special needs. It can be very beneficial for caregivers to pause and think about what the child could possibly be learning when they do something that may be perceived as annoying or misbehaving. Be careful not to shut down what, for your child, is a milestone achievement!
Two of the things that I am much more limited on since becoming a special needs parent is time and patience. I find that most of the time I am patient with my 6 year old son. And I give him most of my time. After him, the rest of my family is next. My 8 year old neurotypical daughter, my husband, my older kids and my grandkids take up a lot of my world. I like it this way. But there is not much left after that.
Add in self care (or at least, I try to add in self care) and my time and patience dwindles down even more. I just don’t have the inclination to spend what’s left on people and situations that don’t benefit me. I am much more apt to end relationships, leave situations that are not working, replace therapists and modify to-do lists than I ever was.
But sometimes it is hard to identify who and what should stay in my life and at what level.
When I first met my husband, it was he who introduced me to the concept of thinking of people as assets or liabilities. Later on I added in thinking of situations in these terms.
Who and what are worth their weight in gold to you?
An asset is simply someone or something, or perhaps a situation that is of value or use to you. A liability? Something or someone that puts you at a disadvantage. Perhaps a situation that is more trouble than it’s worth.
If you are a special needs parent or caregiver, you probably have less surplus time, patience and energy than ever before. I know I do. So, it is to your advantage to periodically review people and situations in your life to make sure that only the most valuable get your time and attention.
Let’s talk about relationships with people. Are the people in your life an asset to you? Do you feel at peace when you spend time with them? Do they enhance your life? Do they energize you? Do you learn from them? Are they living a lifestyle that you would like to emulate? Do you admire them? Have they achieved things that you would like to achieve? Do they lift your spirits? Does spending time with them bring you joy? Are they supportive? Are they there for you in a crisis? Do they understand, honor and support your living the special needs life, even if they are inexperienced with special needs people? If you can answer yes to at least some of these questions about a person, then this person could be an asset to you.
Are there people in your life that are a liability? When you are with them do they suck the energy right out of the room for you? Do they put you down? Do they say things that aren’t supportive when you talk about your hopes and dreams? When you are with them, do you feel on edge? Are they stagnant in their own lives? Do you feel depressed or upset after spending time with them? Are they manipulative? Do they require more emotional energy than you can possibly give? Does spending time with them tend to steal your joy? Do they tend to disappear if you need them? Do they disregard that you are living the special needs life in favor of what is important to them? If you can answer yes to at least some of these questions about a person, then this person could be a liability to you.
It is the same with situations. The therapist you are taking your child with special needs to – asset or liability? Is your child making progress? Do you dread going because of the therapist’s personality? Does the session end in joy or tears for your child? If you decide that the therapist is more of a liability than an asset, guess what? It’s time to give up that therapist and find someone else. Having difficulty getting your needs met with the school administration? Go over their heads (yes, you can do that!). The boss has a boss! Deal with someone who can be an asset to you. Your child can’t afford for this relationship to be a liability. Adjust accordingly. Doing business with someone who is unprofessional? You can’t always leave the arrangement but if it is within your control, take your business to someone who respects your time and delivers the product that you deserve to have. If you can’t leave it, it is time for a serious talk about your expectations. Be honest and forthcoming and you may turn this liability into an asset.
Once you start identifying the assets and liabilities in your life, it is time to make some adjustments. Where will you put more of your time? Where will you spend less of your time? It is not selfish to spend less time around people who are more of a liability to you than an asset, it is essential to your special needs life. Have relatives who you are beginning to recognize as more of a liability than an asset? You may not be able to completely cut them out but you certainly can limit your time spent with them. You may even realize that someone you haven’t been spending much time with lately is a huge asset to you. Adjust accordingly.
This process of examining your life and crafting it to your needs is very eye opening. Sometimes, in the endless whirl of living the special needs life you don’t stop to think about the stress others add to your world. Or, conversely, the joy. You have the power to balance your life by adjusting your world – spend more time with your assets and limit or end your time with those who are liabilities.
This is a tremendous act of self care. You know how people are always telling you to take care of yourself? They tell you to limit your stress by doing a favorite activity, exercising, meditating, anything that is stress relieving. I’m not knocking this – I do it and I need it. However, take it one step further! Embrace the power that examining assets and liabilities in your life gives to you – an opportunity to not just manage stress, but take some of it away.
How do you lessen the stress in your life? Please share in the comments below.
WAIT! DON’T GO YET! I FINALLY FIGURED OUT HOW TO ADD AN E-MAIL SIGN UP TO THE PAGE! 🙂 It is on the left hand side if you scroll up. It takes about two seconds to do and ensures that you don’t miss a thing at livingthespecialneedslife.com. Thanks for considering signing up!
Life doesn’t stop when you have a special needs child. If you have become not only a caregiver to your child with special needs but also to your ailing parent at the same time, I want you to know that you are not alone.
My son, Kai, and my mother; two of the great joys of my life. My loves. They were only with me at the same time for two years but they were two of the most turbulent years of my life. My mother had Alzheimer’s disease and Kai was diagnosed with disabilities at the same time.
Well, not quite. My mother was diagnosed about two years before Kai was born. Actually, right around the time that my daughter was born. But she chose to hide it from me.
My mother had begun to act strangely. In 2010, not too long after my daughter was born, I asked her to go get checked for Alzheimer’s disease. She just didn’t seem right to me. I wanted to be with her, but we lived in Texas and she lived in Las Vegas and with a new baby, and a job, I just felt that I couldn’t be there.
So, when my mother found out that she did, indeed, have Alzheimer’s disease, she decided that I didn’t need to know about it. She was protecting me. We were not only mother and daughter but best friends. And I had just had my first baby, a late in life event that I had wanted for years. I think that she didn’t want to ruin it for me. So she didn’t tell me. It makes me cry to think of her, knowing, and not having my support. I could have gone to her. I would have been there. But all the could haves, would haves and should haves don’t make any difference when all is said and done. I didn’t know. I didn’t go.
She continued to act strangely. When my daughter was a year and a half old and I was pregnant with my son, Kai, she decided, for the first time in years, that she wasn’t coming to be with us for Thanksgiving. I was astonished. Her granddaughter was her pride and joy and she wasn’t coming to see her? But what was even more astonishing was the reason that she gave.
My mother, who had attended Harvard and Columbia University and had a doctorate in psychology, told me that the reason why she wasn’t coming was because she had entered the Publisher’s Clearinghouse Sweepstakes. If she wasn’t home and they came to her door, she wouldn’t win. So she had to be there.
I was still in the dark about the diagnosis and, of course, this was shocking. She wasn’t joking. She didn’t come. Thanksgiving went by, there were a few more weird interactions and I was now hugely pregnant with my Kai. I remember looking at our Christmas tree lights in the middle of the night, unable to sleep, worrying. I was upset all the time. I asked all of my inner circle people what they thought I should do and no one had any idea. Finally, between Christmas and New Year’s, up at 2 AM worrying like crazy, I decided that the one person I hadn’t asked was her. If she didn’t have Alzheimer’s disease, what was going on? Did she know? How should I handle this?
I called her and asked her what I was supposed to do. She finally admitted, in a huff, that OF COURSE, she had Alzheimer’s disease. I was stunned. I asked when she found out and she told me June. I should have asked what year. I didn’t find out until after she died that she had known for two years.
She was protecting me. And, now that I knew, I had to protect her. So I told her that I would take care of her. I asked her to move to Texas. She said no. Her friends and life were in Las Vegas. After talking with my husband, we decided that, well, we would just have to move to Las Vegas to be with her.
My beautiful son was born with no complications, seemingly perfect. I was on maternity leave for three months (with no pay) and went to Las Vegas with the baby to visit my mother, to just be with her and make a plan.
My mother had a small, two bedroom, two bathroom home in a retirement community up on a hill with a beautiful view of Las Vegas. It was maybe 1200 square feet. I had a husband, five kids (I married a man who had custody of his three kids, a totally different post for another day), a son-in-law, a new baby grandson, all of our stuff and a couple of pets. It wasn’t going to work. EVERYONE was moving to Las Vegas.
We decided that my Mom would start packing and I would return to Texas to finish my last 2 weeks of teaching after maternity leave. We would pack up in Texas and put the house up for sale and move into my Mom’s small home. ALL OF US. And start looking for a house.
The journey involves three moving trucks, a rainstorm and more, but again, it’s a post for another day.
When we all finally got to Vegas (my son still seemingly perfect and four months old), my mother had packed not a single box. She seemed unable to remember how to start such a project. After looking at many homes and on our second realtor, we found a 3200 square foot home in Las Vegas. And ten of us moved in.
I got a teaching job. My husband stayed home with my mother and our very young children. My husband was an absolute angel. He took my mother to every doctor’s appointment, managed her medicine, comforted her. He took my daughter to daycare. He cared for my son. And it was my husband who was at the doctor’s office with my son when he found out that my son was not meeting his milestones.
Mom Gets Worse, Kai Gets Diagnosed
My mother was starting to forget how to do things. My husband would hand her her medicine and instead of swallowing it with her glass of water, she would plop the pills into the water. She forgot how to use a fork. She tried to make herself eggs and turned on the wrong burner, her pajama sleeve moving through the fire (we had a gas stove) as I raced across the room to turn it off. We removed the knobs on the stove top. She started to elope, leaving the house in the middle of the night. We had to lock the front door so that it only opened from the inside with a key. And, all the while, she didn’t want anyone outside the house to know (except one friend) about her diagnosis. This was impossible to keep secret. She was starting to be unable to clearly express her thoughts. When we would be out and about, at the bank, the hairdresser, it was increasingly evident to others that something was off. I began to sneak behind her back, to explain to people we dealt with on a weekly basis what was happening. I would try to make her experience seem normal to her. People were suddenly extra patient and understanding and it didn’t occur to her to ask why. Then, one day, we were getting in the car and I was putting her seat belt on her. She could no longer do it herself. As I reached across her, she leaned over and bit me on the arm. Then she laughed. My mother had always had an amazing sense of humor and loved to joke around. In her illness, she was still expressing her humor. It just came out twisted.
I cried. A lot. I am crying as I type this. It was so hard.
My husband was becoming increasingly more stressed. He was home, 24/7 with my Mom. And my son. Who wasn’t walking. Kai wasn’t sitting up. He wasn’t rolling over. He was falling further behind at every doctor’s visit. The doctor suspected that Kai was autistic and referred us to ECI (Early Childhood Intervention).
At ECI, there was another doctor who examined Kai. There were specialists who did developmental play testing. Physical therapists. Occupational therapists. Speech therapists. And so much more. They were wonderful.
Also, around this time, I became the go-to general education teacher to sit in on all of the ARDs at the school I was working at for special education pre-K. They were happening almost weekly. I had little experience in special ed (just one or two students over the years) but lots of experience in general education. This was an eye opening experience for me. Although I had no idea what was about to happen, I got to see firsthand what lay ahead for myself, Kai and our family, when Kai entered public school. I became well versed in the structure of the meeting, sitting through a seemingly endless amount of them. Who knew how much I would need this experience?
After an MRI, Kai was diagnosed with PVL (periventricular leukomalacia), which is damaged white brain tissue. Unlike autism, you can see PVL right up there on the screen when looking at the MRI results. There are about 8-10 different situations that can cause PVL including being a preemie, drug or alcohol use by the mother, lack of oxygen to the brain in utero and lots, lots more. There was no evidence, in our case, of ANY of these situations. Kai has PVL. It is anyone’s guess as to why. Much later on we discovered that Kai also has duplicate Chromosome 16. And autism. And sensory processing disorder. He is developmentally delayed in all areas. But he can learn and he does.
I am, on some level, really glad that at this point I only knew about the PVL. I wonder if I could have handled knowing the full scope of the situation.
ECI started sending therapists to the house for in home therapy. My son was now having up to ten sessions a week in speech, PT, OT and feeding. He was choking on pureed foods at every meal. This scared my husband so much that he wouldn’t give Kai these foods until I was home. It freaked him out. For some reason, I was able to stay calm and got really, really good at the hook method to intervene so Kai could get his air passage open again. We did this every single day for an entire year.
Kai started to improve. At 22 months old he finally started to walk. As is his way, he took a couple of steps for the first time one day and the next day he was walking all over the house. He tends to accomplish things in bursts, we would discover later.
But my mother was getting worse.
She kept reaching out and grabbing my children’s bottoms to check if their diapers were full, then forgetting and grabbing them again, repeatedly. Kai brushed her off but my daughter, who was late to potty train but finally getting out of diapers, complained. Then one night my adult son came up to my bedroom to tell me that my mother was face down on the carpet no pants on, and stuck there. It was 1 am. I was supposed to teach the next day. I got up and went downstairs to help her.
Helping her was no mean feat. I got her up and into the bathroom. I discovered that she was stuck halfway through a bowel movement and that she couldn’t pass it. She screamed at me the entire time, asking me why was I doing this to her? She fell off the toilet. She fought me. And I manually had to help her pass her bowel movement. She calmed after this. I got her cleaned up, changed and tucked her into bed. Then I sat on the couch in the darkened living room and I cried.
After a week long hospitalization for more of the same I discovered that my mother had been hiding and eating a bar of artisanal soap. She thought it was candy. She had gnawed her way through half of the bar.
My son was still choking at every meal. I was still working full time. My husband was still a 24/7 caregiver. And the pressure seemed like it would never end.
My mother started running through the house from one piece of furniture to the other. It seemed as though she were trying to outrun her disease. She forgot who I was. My whole life she had called me by my middle name. Then that was over. She began to call me by my first name like everyone else did. Because she forgot who I was, her daughter, her best friend. However, and I smile to think about it, she never forgot who my husband was. He called her Mom. And often she would express her affection for him, saying things like, “I like you. You’re crunchy.”
When we couldn’t get my mother to stop running, I would sometimes climb on top of her and pin her down just so that she, and everyone else, could get a break.
And then my mother stopped eating and drinking. We had in home respite care coming in at this point because my husband was about to implode with stress. But they couldn’t keep up with her. They were used to patients who just stayed in bed. After the third or fourth day I tried to force my mother to drink and she fought me tooth and nail. It got to the point where we had to take her back to the hospital, where we had just spent the week from the soap eating incident. But she wouldn’t leave. It took four adults to carry her, feet first to the car. She fought the whole way. She would never return to the house. Our older kids watched the younger ones. The two oldest were adults by this point and knew how to take care of Kai.
My husband drove and I sat in the front seat trying to keep it together. He got out of the car at the emergency room and went in to ask for assistance because there was no way we could get her out and into the hospital ourselves. My mother and I were alone. I turned around and looked at her and said, “Mom, here’s the thing. We are at the hospital. But you have a DNR. If you keep refusing to eat and drink, you’re going to die. What do you want to do?” It seemed as though the clouds cleared away from her brain in that moment. Her eyes were the clearest they had been in months.
She looked straight into my eyes and said, “I want to die.”
I said, “OK, Mom. OK.”
The hospital staff came and got her out of the car. She was put in a wheelchair. She screamed the entire time. And we went into the ER. At some point, between them trying to insert an I.V. and a catheter, I decided that she had had enough. She had already told me that she was done. I listened to her pain and decided, no more. I asked the hospital how this would be handled and they recommended that we go to hospice, where my mother could be medicated to feel no pain and pass with some dignity. So I made the very difficult decision that I would help her do what she wanted to do. She didn’t want to go any further. She didn’t have other options. It wasn’t going to get any better.
It took five days. My mother, my best friend, my lifelong champion, passed away. On her terms.
And I helped her do it.
It is sometimes hard to live with.
We were now in a town we had no reason to be in. We lived in a house that we didn’t need. My husband and I were exhausted and we just wanted to go home.
It took months. We finally sold the house, and were moving back to Texas. In the middle of the drive there, the house we had lined up to live in fell through. We were then homeless. It’s another story for another day.
Whatever is happening in your life, I want you to know that you are not alone. There are others out there who are going through it too. Reach out. Ask for help. Ask for respite. And don’t forget, that everything changes over time. I felt locked into my situation. It felt like it was forever. My marriage was stressed beyond belief. My son’s diagnosis, along with my mother’s, was almost more than I could bear. But I got through it and you can too.
I couldn’t have gotten through it without help. My husband was my partner in this. The community needed to know, so that when I took my mother out in public, they could help care for her too. Everyone, from her hairdresser to the people who worked at her local bank branch to the local fast food place, knew the deal. The neighbors knew to look out for her if she eloped.
The same can and should be put into place for your child with special needs. It is said that it takes a village to raise a typical child. But when it comes to raising special needs children, we tend to close ourselves off. We tend to think that we can’t reach out because people won’t understand it like we do. And you’re right. They won’t. But they can still help.
Let people help.
You can do this. Take a deep breath. It isn’t forever. It IS hard. But you will come out on the other side.
I had my son, who has special needs, late in life. I was 38 when he was born. In about six weeks he will be seven years old. I am now 45.
In my twenties I had more energy than I knew what to do with. In my thirties I was a little calmer, but still wanted to go out and do things. Now, in my mid forties, I have been on a crazy sleep schedule for years. My neurotypical daughter, almost 9 years old, didn’t sleep through the night until she was five years old. My son often sleeps through the night now, but we are off schedule on school break and as I write this it is 3:26 am. We have been up since 2:11. I have also gone through the loss of my mother since my children were born. And my husband has a long term illness that he is still recovering from. So, suffice to say, my health and wellness has not been a main focus for a long time. And, I have discovered that being in your forties is a whole different experience than the twenties and thirties.
My body is more sensitive to disruption. I have developed fibromyalgia. Getting snatches of sleep that equal eight hours doesn’t work for me. I am almost always tired.
In contrast to this, my son is growing. He is getting taller and heavier. He is stronger than ever. And I am starting to get hurt.
Ultimately, this is a game that I will lose. He will always be younger than me. He is projected to grow to the incredible height of 6’6. And, right now, he often communicates by tugging at my body. He pulls me.
My son is not trying to hurt me. He is trying to communicate.
SONY DSC
At first, when I realized that it was going to become progressively more painful, I was reactive. I became incredibly worried. There was no way that I could keep up with him physically over time. Then I became proactive. Because I could see what was coming and it was going to be painful if I didn’t put some things in place to change it.
It is said that you must fill your own cup first. That the overflow is what goes to those around you. That if you take care of yourself first, you will be able to care for others better. I have been operating on the fact that being a special needs mommy means he comes first, always. I can see over time that this will backfire. So I am in the process of fixing it. I have realized that by taking care of myself first, I am actually still putting him first. He needs a strong, healthy mama.
Look, aging is not a choice. But self care is. You know how there can be two 75 year old people and one looks 50 and the other looks 100? A lot of that (not all, of course) can be attributed to self care.
I am approaching this problem from two different directions. You can do this, too.
First…
Wherever you are on your special needs journey, but ESPECIALLY if you are stuggling physically to keep up, stop and examine if you are taking care of your health. Check in with yourself.
Are you eating well?
Are you eating regular meals? Are you gulping and not chewing? When was the last time you ate something that grew that way? Like a potato instead of a processed chip?
Are you drinking enough water?
Coffee and energy drinks don’t count as water. They can actually dehydrate you. Pay attention to your water intake. It makes a huge difference in how your body functions.
Are you exercising?
No, chasing down your child for a diaper change doesn’t count. When was the last time you worked out? Or went for a walk? Yoga?
Are you doing some sort of strength training?
My son is getting bigger. It is getting tougher to physically do what I need to do, dressing him, changing diapers, helping him in and out of cars, etc. Is it getting harder for you? Strength train. Please start slowly and ask an expert for help if you don’t know how to do this. The last thing you need is to get hurt when you are caring for someone with special needs.
How is your mental health? Do you need extra support?
Exhausted? You are more vulnerable to depression. Anxious? What special needs parent isn’t? Seek out support. Parent support groups, therapy, whatever you need. Don’t know where to begin? Ask the school for referrals. Don’t worry about it being seen as a parenting weakness. They will admire you for having the strength to ask for help. Can’t leave the house for therapy and care for your child? You could even do it over the phone while your child watches the same 10 second clip of Dora the Explorer over and over. That’s not optimal but it sure beats nothing.
Second…
In addition to this introspection, examine what you can put into place with your child, NOW, to ward off being injured later when your child communicates by manipulating your body. Or, whatever they are doing that is starting to hurt. For example, my son likes to come up to me when I am sitting in my recliner to get me when he wants milk. He will reach out, take my hand and tug on it. It was completely adorable when he was two but now that he is almost seven, sometimes he twists my fingers really hard. Add in my fibromyalgia and it’s a recipe for pain. For the last several months, as my son is just becoming verbal, I have been modeling the words, “Come with me.” When he pulls on my hand, I take it back, look him in the eyes and do nothing. He tries to tug again. I wait him out. He tries to figure out why I am not moving. Then, as if I just figured out what he meant, I will ask him, “Do you want Come With Me?” He usually says, “Yeah.” “Oh,” I say, “You want come with me!” I say this in a sing song voice. This morning, he came up to me and said, “With me.” Without tugging. This is not an overnight event. We have been working on this for months. But, if I don’t put the time in now, when he is 14 and 20 and beyond, can you imagine what my potentially 6’6 son could do to my hand?
This may not work for your child. If they are not verbal, you can do this with PECS (picture exchange communication system). Have pictures available for your child to point to and practice using them. Ask for help to implement this from the speech therapist if you need to. You can also consult a behavior specialist for suggestions on what to replace behaviors with that have the potential to hurt others down the road.
Your issue could be completely different. But whatever the issue, the steps to solving it are the same. Try this out:
Identify the problem.
Imagine where it could lead to if it continues without intervention.
Imagine how you would like the situation to change. What would you like it to look and feel like when it is solved?
Come up with solutions.
Ask for help if you need it. You may need help creating the solutions or just implementing them.
Implement the solutions. Adjust as needed. If they don’t work, try something else.
This is key. PERSIST. Your first 2 or 5 or 20 solutions may not work but SOMETHING WILL.
It sounds simple when broken down into steps and these steps will help you focus. But, as you already know from living the special needs life, nothing is as simple as it appears. It is OK. It may take a while (months or even years) to solve, but you can do this.
If you see something coming down the road that has problem potential, be proactive now. Don’t wait until you get hurt. Use your resources to solve the problem.
And take care of yourself. YOU are the world to your child. Take care of your child’s world.
Sometimes it seems like I am forever fighting with people. My son, who is 6 years old and has special needs, has spent his life working with people from various programs. First it was ECI (Early Childhood Intervention). Then it was PPCD (Pre-School Program for Children with Disabilities). Concurrently, we also got services from an outside source for various therapies. And now, we are in public school at an all special needs campus, self-contained (which is exactly where my son should be). Along the way, there have been mostly incredible, talented and caring folks who wanted what was best for my son. But sometimes, what seems best for my son to these professionals is not what I or my husband think is best.
When you run into a situation with the school where you want more or different services than they seem willing to give, it is important to have a plan in place. You want to successfully persuade them to give you what you want. Sometimes this can be done in a “nice,” manner, which, let’s face it, is optimal. But, sometimes, when you can’t get everyone on board with what you want, you have to persuade them.
Tenacity for the Win
Tenacity is determination. It is persistence. In the teaching world, the buzz word for the last decade or so has been grit. This is the key to getting what you want. Having taught in general education for fifteen years before I became a stay-at-home mom, I learned a few things:
Take up their time.
There are not enough hours in the day for people employed by the school system. Teachers, diagnosticians, administration, counselors and therapists have a large caseload. They work 24/7. They dream about it. So they only have a certain amount of time allocated to considering giving you the change that you want. When you push this time boundary, they may give you what you want just so that they can move on. Be willing to spend as much time as it takes to convince them of the change that you want made.
Learn the law.
They generally assume that you don’t know the law. They may or may not be conscious of this assumption. So sometimes they will give reasons why they can’t give you what you want but those reasons are not legal. Additionally, they can get in trouble for giving these reasons. For example, if you want your child to have more time in speech or to have individualized speech, the therapist cannot legally say that the reason why they don’t want to do this is because their case load is too heavy and there is no time. If this is true, the district is legally required to hire another service provider. But if a parent doesn’t know this and they are told there is no time in the schedule, the parent will often back down. It is to your benefit to be knowledgable when it comes to special needs education law.
Cite research that supports what you want.
Schools LOVE to cite things that are research-based. It is to your benefit, when requesting something different than what is being provided, to bring along an article or two that supports your position. These articles are available on the internet. All you have to do is search for your topic. Extra points for fancy-sounding places that did the research like Ivy League Schools or well-known education organizations. You are not looking for a cool post on this topic from a random guy named Fred.
Take your own data.
Schools like to take data on students to show what is or is not working. You can take or keep your own data at home to present at the meeting. It is as simple as giving your child multiple chances on different days to show what they know. For example, if you feel that your child is not benefitting from how they are being taught sight words, you can, on five different occasions (perhaps once a week) present flash cards to your child and write down which ones they know and which ones they don’t. Keep this information. Then, if your child makes no progress, bring this data to the meeting. Explain that you took this data over five weeks, once a week and your child did not show any progress. Then explain what you want to be presented to your child instead of what the school is doing now. This data is evidence that what they are doing is not working. It is hard to argue with what a parent wants when there is proof that what the school is doing is not working.
Do not accept sub-par interactions for your child.
It is your right to request another provider if you feel that your child needs someone else. Depending on the setting, you may or may not be able to get someone else but it is always worth pursuing if the provider is sub-par. An example of this is a therapist that came to our home through ECI when my son was about two years old. She made no effort to connect with him in any way and her content delivery methods were mediocre. When my husband discussed this with her, she stated that it was not her job to love on my son, it was her job to model what to do for us so that we would deliver the actual therapy. My son did not want to work with this cold woman and cried the entire time. My husband showed her to the door and told her to never come back. We then called ECI, explained the situation and requested another therapist. The new therapist was stellar! She bonded with my son, loved on him and got more accomplished in one session than the other woman would have ever accomplished. Any teacher or therapist of value knows that if you cannot connect with the person you are working with, you will not be able to teach them anything. You have the right to ask for this. But you must speak up.
When I started telling people that my son has special needs, I often heard about how he could be a child prodigy! Perhaps he’d become a famous musician! A scientist! A mathematician!
No pressure.
The reality is that this is the exception rather than the rule. Most children with special needs will grow up to be adults with special needs. Average.
Just like, well, you.
So where is this idea coming from?
Well, there is Sheldon on the Big Bang Theory. He is an incredibly high achieving scientist. The Good Doctor. He has autism and is a savant surgeon! Einstein was said to have had special needs. If I hear again that my son will become verbal, because, well, look at Einstein, he didn’t talk until he was at least four, I may implode. Beethoven! He lost his hearing at 26 years old and is one of the greatest composers in history. Oh, wait, Marla Runyon! She is an Olympic Gold Medalist in running who is blind. Frida Kahlo, an incredible painter from Mexico, had polio at 6 years old, leaving one leg weaker than the other. Then she broke her back and spent the rest of her life in a cast but still painted! Does your child have this issue? They could be a painting prodigy!
Never mind that aside from these famous folks, there are millions of people in history who had special needs and led wonderful lives. “Average” lives.
When I hear these people chime in with these ideas, time and time again, it says very little about my son, who has special needs, but says a lot to me about them. I think that they are uncomfortable. I think that they need to comfort me in what they perceive as my loss, by telling me the possible upside. It makes me think that their experiences with folks with special needs are limited. That my son having special needs makes them uncomfortable.
There is a saying that I have heard repeatedly. It is that when you know one person with special needs, you know one person with special needs. It is a world that is so individualized that two people could have the exact same diagnosis and it could present itself so radically differently that you would never know it. I cannot base my son’s worth in life on what other folks with special needs have achieved. That would be like saying that I should have been a world-renowned gymnast like Nadia Comaneci because, look, we both have two arms and two legs!
I am not discounting my son. Far from it. He is a world of possibility. He has already displayed a wicked sense of humor. And, at the age of 6, I have realized that one of his amazing talents is that he is a spreader of joy. He makes people smile everywhere he goes. If he achieved nothing else in life, this would be an incredible contribution to the world. But I know that he will achieve more.
It is 2:10 AM and my son is up for the day. For the second day in a row.
Yesterday was Christmas Day. My son, Kai, who is 6 years old and has special needs, was up for the day at 2:30 AM. This is day 2 for extra early rising. What does this mean for me as a special needs parent?
As you can imagine, exhaustion.
I paused to stare at the last sentence, glazed over, shook myself out of it and continued to type.
Yesterday, Kai’s dad got up with him but my sleep was still completely disrupted. I have been trying to do that self care thing that everyone (including me) is always talking about and this includes a daily walk for an hour. Yesterday’s walk qualified as more of a trudge. Have you heard about this new workout that is sweeping the nation for special needs parents? Take a daily trudge. It is self care. I think the joke that I have just made is funny. But I have slept very little. So, who knows?
The New Year is coming. It is time for those annual resolutions. I am a fan of them, and I do have plans for the New Year. I would like to tell you all about them. After I get some sleep. One day.
There is still a stack of presents on the floor near the Christmas tree. Kai does not enjoy opening presents and really has no use for any of them. He has very basic needs. His Dad and I have tried in the past to involve him on Christmas morning but he wants to be left alone and usually leaves the room with his tablet to relax in a quiet spot. Yesterday he stayed in the room but did not participate. We let him do his thing. Honestly, it was joyful to just be able to look over at him as our neurotypical daughter, age 8, enjoyed her bounty. Afterwards, I sat next to Kai and “helped” him open a book (which means I opened it while he ignored it). He was interested in looking at the book briefly but then took it from me and put it down. At bedtime last night I tried to read him the new book but he took it from me and replaced it with the same book we have been reading for months. Which, of course, I have memorized.
Ten Tiny Toes.
I just stared at that sentence, with foggy brain, for I don’t know how long. Breathed deeply. Continued to type.
This is what it is like. I am sitting here in the middle of the night (early morning?) drinking coffee while Kai rocks in his dad’s rocker recliner which is pretty close to being destroyed from all of the action it gets. I am already thinking about my next nap. And the fact that I need to do another daily trudge. Later today. After the sun comes up.
I imagine all of the special needs parents that are up at this hour. Doing what I am doing. We sometimes feel alone, isolated. It is just us and our children and the darkness of the early morning hour. But we are doing it at the same time. Just in different places.
I just glanced over at my son, vigorously rocking, with the sweetest smile on his beautiful face. I know that this is exactly what I am supposed to be doing.
I try to focus on that smile during the daily trudge.
One of my all time favorite songs is Right Now by Van Halen. It says,
Right Now
Hey… Is Your Tomorrow
Right Now
Come On, It’s Everything
Right Now
Catch That Magic Moment and Do It Right Here and Now
It Means Everything
Whatever you feel guilty about, let it go. Whatever ball you have dropped, just bend down and pick it up. Do what you can do. Right here and now.
Whatever you have put off, do it now. Whatever you know you should deal with but you have been dragging your feet, get it over with so you can stop thinking about it. Lets turn this thing around. Right now.
Did you start working with your child on something and then kind of let it go? We all do that. Life gets in the way. Hey, sometimes you JUST DON’T WANT TO, you are tired of going full throttle. I get it. We’ve all been there. Special needs parenting is 24/7/365. Take your break. But then, pick it back up. Keep going. You can do this.
It’s not about perfection. It’s about showing up.
Persistence and consistence beats resistance.
For your special needs child, for you, it means everything.
It goes back 28 years but the message is still fresh. Listen and get reenergized:
If you missed my last post, my son, who is special needs, left the house on his own for the first time. This was a terrifying experience for our family. Take a look at the post to catch up:
We are far from alone. It is said that about half of all autistic kids will elope at some point in time (elope meaning take off, not getting married). Extra scary was the fact that we are up the hill from a lake that would have taken two minutes for my son to walk to and about a ten second walk from the road.
Now that the dust has settled, breathing has recommenced. That, and the ever present push to plan ahead. Because when you are living the special needs life, you need to try to envision what’s coming next. You need to be several steps ahead, if at all possible. Hypervigilance is an exhausting but necessary state of mind.
I knew that it was important for me to remember that this has happened before for other families. Why reinvent the wheel when I can investigate what other families have done to prevent this scary occurence from happening again? So, off to the internet to search for solutions I went.
I found this wonderful article that absolutely refuses to let me give you a link to it. So here is the URL: https://veryspecialtales.com/prevent-autistic-child-wandering/ If you highlight it, copy it and paste it into your search bar, you’ll get there. Don’t miss this incredible resource!
I am so grateful for this article. Thirty ideas to take, make your own and apply to your unique situation! I wasn’t sure where to start, so this gave me a place to begin.
After discussing it with my husband, we both agreed that number 29 spoke to us. It states, “If possible, identify elopement reasons and try to address them.” We know why he went out. He wanted to jump on the trampoline, which he loves. In fact, he spent the rest of the evening after the escape trying to drag me out the door to go back to it. It is hard to bake with a child attached to your leg and yanking on you! We know that until we get the money to fence in the whole play area, he can’t go out there by himself (I miss having a completely enclosed backyard!). So we have decided to do the next best thing. We are going to buy a trampoline and put it in the house.
We have only 1600 square feet. Last year we decided to downsize when we moved to the country and it is much easier to take care of our new home than our former 2700 square feet. This is going to be tight. But choosing between bringing in what he wants from the outside or dealing with elopement and endless fussiness, for us, is a no brainer. And we are not buying one of those minis with the handles. Five feet and up to 220 pounds with a net around the top and bottom is the way to go for us.
By removing the reason why he left the house, we are hopeful that we won’t have to deal with this again for a long time. But we know that eventually, we WILL have to deal with it again. Every time you think you have things under control, the game changes.
In addition to the trampoline we also had a family meeting. We discussed the procedure for locking all of the locks each and every time we go in or out. We added extra locks that my son can’t yet manipulate. But eventually, he will figure it out. He’s really smart. I’m also still thinking about the service dog on the list. I am hesitant because I have been changing diapers for almost nine years so more poop management is not appealing. But, maybe we’ll do it anyway.
