Posts tagged struggles

Day 220 – The Wonderful World of Adult Services

 

I have to be honest, I haven’t posted much lately because I haven’t had a whole lot of positive stuff to post about. I really struggle with posting the negative stuff because it makes for some awful reading material. I am an optimist and naturally, what I enjoy putting out there is positive stuff. It’s difficult to express some of the more unhappy things and the reality is, there is quite a bit of negative things. Read More

Day 208 – New Year’s Resolution

I just read a blog about how having three children is a whole other universe to having two children.  I agreed with it but laughed a little.  Well, maybe a lot.  It could have been one of Calvin’s maniacal laughs really but it is morning and Andrew decided it was going to be a mischievous day for him.  It really hasn’t been more than an hour since he has woken up and I am already on the verge of calling in some reinforcements. Read More

Day 172: What It’s Like

I can’t remember if I had posted this or not but I had written a letter several years ago before I started blogging.

The background to the reason for the letter is as follows. The boys were in therapy and at therapy, there was a very large black book of policies and in it contained policies from where to greet the parents and children to how to handle infectious diseases and that policy probably was about half of that big black book.  They had a colour chart for the discharge from a child’s nose and #of hours after a loose BM for the child to stay home requirement in there.  It was incredibly ridiculous in my opinion especially since part of the condition of Autism involves either chronic constipation or chronic diarrhea.  My boys always had loose BMs. It took me a long time to convince them of that fact and that they were not going to give everyone in the building the runs.

Ethan had at one point gotten a hold of a toothbrush and used it as a stim toy. A stim is a repetitive behaviour a child can fixate on in order to stimulate their senses of touch or sight or sound or with a certain movement.  Ethan had this toothbrush and managed to irritate his stomach and there was a red mark.  The IBI looked it up in their big black book and informed me that Ethan had to see a doctor before returning to IBI.  I called them and told them it was from him stimming with a toothbrush.  They insisted he needed to see a doctor first.

Now seeing a doctor may seem like no problem to the average person but for the parent of a child with Autism, it is an absolute nightmare. A child that does not understand physical boundaries, has a tendency to destroy any paper and toys within seconds, who absolutely can not sit still for anything, hates waiting and throws temper tantrums for any one of those reasons and that is all before we even get into the exam room.  Add to that a physical exam where he had to sit still while being poked and prodded in a tiny room with no room to wander and I had developed a terrible dislike for doctors visits.
My dislike had nothing really at all to do with the doctor but it was awful and I avoided those visits unless it was absolutely necessary and I knew what the cause of Ethan’s rash was and thought it ridiculous that they would not take my word for it.  So in my frustration, I wrote the following letter and gave many copies of it out so that they could place it in their big black book of policies!

I am the mother of 3 “special” boys. My oldest is 8 yrs. Old and wears two hearing aids for a mild hearing impairment and is, in all likelihood, going to have a diagnosis of ADD within the next month or two. My 6 yr. Old son is autistic and is completely non-verbal and is on the most severe side of the autism spectrum. My 5 yr. Old is very similar to my 6 yr. Old except he says “mama” on occasion.
I have written this out of raw emotion and not for any literary reason except to offer a bit of a glimpse into the shoes I fill 24-7. So the grammar and English are not the best and the metaphors are poor. I hope that perhaps people who read this who wonder how I can do it or what is going on when I appear a little distant or foggy brained or cannot relate completely with the world around me, perhaps they can understand just a little bit better upon reading this.
What is it all about, being the mother of three “special” boys? It’s about meeting the nutritional and dietary needs of three very different likes, dislikes and restrictions (ie:gluten and cassien).
It’s about teaching self-help skills to children who require 100 repetitions and rewards to attain a skill that requires only 5 to 10 reps. for the average child to learn the same skill.
It’s teaching an emotionally over reactive boy how to get along with friends that have already figured out his weakness and have targeted it.
It’s trying to guess the possible reasons for a dramatic change in behaviour that leaves my normally happy, easy going boy into an explosive child that erupts into a very loud, self injurious fit that no amount of feeding, deep pressure, comfort, discipline, time outs, redirection or medicine will ease.
It is about not getting all the children settled and asleep for the night until about 10 or 11 pm, even if you begin at 8 pm. Then to be awakened to shrill screaming and stomping at 3 or 4 am and not being able to get them back to sleep before they need to be off to school.
It is spending 2 hours with my grade 3 student, constantly redirecting his attention back to his homework of one sheet that should only take 15 minutes to complete.
It is avoiding reading or seeing more news on another family’s plight so that I don’t get upset and cry about my own plight.
It is about cleaning sheets and carpets in the middle of the night because a child woke up and had a bowel movement then had a sensory experience with it afterwards.
It is averting the darting child and constantly setting up situations where I don’t have to handle two at the same time because usually one runs away or gets into something in the 20 seconds that I’ve let go to handle the other.
It’s about reading all the news of the latest treatments, vitamins and concoctions that find their way to my doorstep, mailbox, inbox or windshield and weeding out what is worth the time and money trying. It is also figuring out how long to stick with it and judging behaviours that correspond with the miracle cure.
It is about taking the proverbial two steps forward and one step back.
It’s about keeping birth dates and medical and developmental histories for each child memorized and sorted with the proper child, ready to recite on demand. Not to mention aptitude scores and how many BM’s they have a day as well as what time of day they occur.
It’s about those times when I have no choice but to take one of them to the doctors or hospital when they are sick. I am met with looks ranging from shock, horror, sympathy, disgust, surprise and helplessness from people as I try to tame one of those fits while waiting over an hour for someone to even suggest some kind of help while my child bites, hits, pushes and kicks at me out of the sheer terror of this situation they do not want to be in while they are sick and hurting.
It is also wondering who will actually misjudge the situation and call FACS.
It is about trying to balance the wonder mom act of doing incredible feats in “floor time”, potty training, cognitive development and behaviour management and giving myself some questionable “me time” so that I don’t self destruct when my husband is 2 minutes late going out the door for our appointment with the accountant at tax time.
It’s about hearing the advice from friends, family, professionals and neighbours without feeling like I am not doing enough.
It’s about knowing how many couples divorce when in a situation somewhat similar to ours and trying desperately not to become one of those couples.
It’s about trying not to ignore my husband’s needs for food and attention not to mention his need for clean and ironed clothes.
It’s about exhausting the bank account of the last $2.00 the day after pay day knowing of upcoming financial obligations before the next pay day.
It’s about wondering if a friend is criticizing me behind my back for feeling overwhelmed and basically having a “pity party” every once in a while when I’ve just about reached the end of my rope and the PMS is in full swing.
It’s also wondering if friends don’t want me around anymore because they don’t know how to deal with me and my “baggage”.
It is also about trying to be a normal woman and having fun with people so that I can step out of things for an hour or two and be that carefree 21-yr old with no responsibilities, burdens and obligations that I once was.
It is about trying to correct the things in me that are not good.
It is also about failing to do that and trying to conquer the guilt.
It’s about wanting (on the rare occasion) to get in the car and drive away but knowing that in my mind, that it is impossible.
It’s about dreaming of things getting better and then waking up.
It’s about the struggle between accepting the disabilities in my boys and loving them for who they are and wanting improvements.
It’s trying to be sensitive to friends who don’t understand and get hurt when I say so.
It’s also about not reacting to ignorant people because they are unacquainted with Autism.
It is about wondering why God thought that I could do this. I feel significantly inadequate!
It is about the characters that emerge from my guys that give me rare glimpses into their personalities. The coy turn of the head, the comical raising of the eyebrows, or the twitch of the nose that will send us both into hysterics that proves that they are not void little bodies that are completely unresponsive to the world around them.
It’s about those smiles and hugs that make me forget about everything else and melts my heart for the love I feel from that simple expression.
It’s about the hope that regardless of whether any of my circumstances change or not that I am changing and learning. My hope is that you will too!

Yup I was mad.  But I sweetened it up in the end, I think.

Day 166: Faith and Autism

Faith and Autism,

I have been posting about the different issues that we have to encounter as parents with children on the spectrum as a way of making people aware of the struggles a family faces on a daily basis and in the different ages and phases of life.

Today I wanted to share something that helps us (my husband and I) with those struggles.  It not only helps us with our struggles, it keeps us strong, maintains our marriage, provides a hope, and picks us up when we are down.

It is faith.

We believe that God is personally taking care of us, protecting us and that He is using others to encourage us.

What is faith?

It is a belief in a God who not only created us, but loves us and gave the consequences of our sins to His only Son to offer us the gift of salvation from those consequences but also a promise to be forever in His care on earth and beyond that in heaven.

We have all seen the words John 3:16 in the stands at sporting events.  What is John 3:16?  It is these words from the bible “For God loved the world so much that he gave his one and only Son, so that everyone who believes in him will not perish but have eternal life.”

We accept this gift by faith, not on our own merits so thankfully, it is not conditional!
Ephesians 2:8-9 “God saved you by his grace when you believed. And you can’t take credit for this; it is a gift from God. Salvation is not a reward for the good things we have done, so none of us can boast about it.”

And once we receive this gift, faith is our hope.
Hebrews 11:1 says “Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see.”

We practice faith all the time.  We put faith in banks when we deposit our money, we put faith in babysitters when we leave our children with them, and we covet faithfulness in relationships with our spouses, family and friends and we even show faith in the chairs we sit in to hold us up.

We (my husband and I) have a faith in God and He has never let us down and has revealed to us in many circumstances that He is taking care of our family.  (See blog post Day 12!)
We have a confidence that although life is harder for us, there is a bigger and much more rewarding purpose to our circumstances.  We couldn’t carry on too well if we did not have faith in that.

Where do you put your faith and is it holding you up?

 

Day 161: Adults with Autism – Crisis

With autism, there are different stages in which parents and kids have adjustments to make.  First is from diagnosis to pre-school.  Second is pre-school to elementary and then from elementary to high school and last from high school to assisted living or with less severe adults, into work programs.

Each phase usually involves a whole new team of assessers, advisors, and facilitators.  It usually involves different government funded branches of social services and new paperwork and protocols and certainly a period of transition for kids and adults with ASD and a whole lot of stress for families.

Currently we are in that transition to high school phase for one son and then again next year for the other but we should be pros at it by then.

It is the next phase that is giving me a little stress and I am going to enclose an article in the Toronto  Star which tells the stories of so many that are in crisis right now for what will soon come for our family.

Andrea Gordon
Family Issues Reporter 

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Gloria Noseworthy fought for 21 years to build a life for her son in their Innisfil community, where everyone knows him and friends greet him with hugs and high-fives.
But the single parent is running out of steam. Zach has a developmental disability and autism. Until he graduated from high school last June, his days were fulfilling.
This fall, the positive momentum came crashing to a halt. There aren’t enough day programs for young adults like Zach. And now because of changes to provincial funding for families who care for their adult children at home, Noseworthy is struggling to make ends meet.

Chronic underfunding is pushing parents of developmentally delayed adults to the brink, say families and advocates across the province.
Wait time for a spot in a group home or supportive housing can take years. And parents like Noseworthy, who want their kids at home, don’t have enough support.
Instead of going to her job at a drugstore, Noseworthy spends her days searching for care options and driving Zach to whatever supervised activities she can find — two hours of bowling one day, an exercise class the next. Routine and social interaction are critical, and already she sees her son backsliding and starting to disengage.
“The system is not working,” says Noseworthy, 52. “Why are we having to fight for something we shouldn’t have to fight for?”
In the last few weeks, three families in crisis have gone public, saying have no choice but to surrender care of their adult children because they can no longer manage.
“These stories are only the tip of the iceberg,” says advocate Janis Jaffe-White of theToronto Family Network. She recently helped launch the Ad Hoc Direct Funding Group of families and support workers from around the province calling for urgent solutions.
The situation has become so dire that Conservative MPP Christine Elliott launched an all-party select committee at Queen’s Park, hoping to propose solutions within a year.
“There needs to be an influx of funds into this sector to allow people to have the opportunity to be included in their community,” says Elliott, her party’s health critic and deputy leader.
“Because the reality is when they finish school at age 21 there’s nothing out there for them and they end up watching television in their parents’ basement.”
To not provide the funds makes no sense socially or economically, she adds.
It costs at least $100,000 a year to provide residential care, while those at home typically receive a maximum of $25,000, and most get far less.
The latest blow to families was the announcement last spring that Special Services at Home (SSAH), a 30-year-old program for children and adults that provides up to $10,000 a year,would no longer be available to those over 18. Those already receiving the funding were grandfathered until next April 1.
The news, which came without warning or consultation with parent advisory groups, has caused panic and confusion. Many rely upon those funds to hire support workers at home, cover respite care and help their children develop skills.
Direct funding for adults will now be distributed through the Passport program, which was introduced in 2005.
But that program has been plagued with backlogs, with 3,700 on the wait list. Parents of 18-year-olds fear their children have been cut off from one program only to go to the back of the line for another. They don’t know what support they can expect next spring.
“The ministry is currently looking at the next steps and will be communicating with families in the very near future,” Sandy Mangat, spokesperson for the Ministry of Community and Social Services, said in an email last week.
Longtime advocates say SSAH once represented a vision of social inclusion for the developmentally disabled.
The reality now is “social exclusion,” noted a June report by the Special Services at Home/Passport Provincial Coalition, a group of Ontario families and agencies.
The province has said the changes are part of its “transformation of services” aimed at making the system more transparent and consistent.
“I want to be clear: we are not reducing funding for developmental services in Ontario,” John Milloy, community and social services minister, said in a recent statement.
He acknowledged the “tremendous demand” for supports and said Ontario has increased funding over the years.
However, it has not nearly kept pace with the need, with 12,300 eligible recipients on wait lists for SSAH and Passport funding, according to ministry statistics.
For young adults out of school, the lack of money and programs means their lives “are essentially ‘on hold’ ” leaving them vulnerable, marginalized and unable to reach their potential, warned a report last year by ARCH Disability Law Centre.
The paper questioned why the province didn’t invest the money it saved by closing large residential institutions over the last decade in helping the families providing care.
The $143-million currently supporting those families represents 8 per cent of the total developmental services budget.
In the meantime, Gloria Noseworthy is treading water. The $2,000 a year Zach received from SSAH this year meant she could hire an occasional caregiver, and cover the cost of summer day camp while she went to work.
Now her work is squeezed in here and there because there are no options for Zach.
It costs $15 an hour to hire a caregiver, and she earns a little over $12. She has no retirement savings.
Noseworthy is devoted to her son, but she’s stretched to the limit.
“People don’t realize what we are going through on a daily basis.”

Day 159: Grace for the Unslept

Sleep…

One very real and unwelcome trait in Autism is the lack of sleep.  I would say that all parents deal with sleep issues with their children with Autism at some point.

There seems to be something missing in kids with autism that triggers the need to sleep.  They will have a difficult time getting to sleep and often will wake up in the night ready for the day to begin.

My kids have had nights with literally no sleep at all and go throughout their day without sleep and still have a hard time going to bed the next night.

Keep this in mind when dealing with parents of children on the spectrum.  It could well be that these parents haven’t had a good night’s sleep in years and lack of sleep can lead to a number of things.

WebMD says “it impairs attention, alertness, concentration, reasoning, and problem solving.” It causes accidents, makes you forgetful, can make you gain weight and “over time, lack of sleep and sleep disorders can contribute to the symptoms of depression”.  Lack of sleep can also “affect our interpretation of events. This hurts our ability to make sound judgments because we may not assess situations accurately and act on them wisely.”

It may be easy to understand that parents are being misjudged as bad parents for the behaviours of their children with ASD but I think it is equally important for people to understand that parent’s behaviours themselves may also be impaired due to lack of sleep.

Of course we would not want for people to think that we can’t ever make sound judgements or react to things rationally, but rather that people understand sometimes when we aren’t making sense, slurring our speech, blankly staring and walking a little askew.  We do the best we can with what we get and it helps to have a little grace.