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Relationships – My Story

My story is not just about my son and about my family. It is about a lesson I have learned . It is about the success I found when coming to terms with what needs to be done, accepting it and transforming my limitations.

Finding determination, commitment and self discipline were needed to help Zackery. Also innovation, creativity and social fun became important.

My life with three children was never easy. I tried to be perfect, making sure that I was building good relations with everyone. I basically had three families; one with my son one-on-one, one with my two daughters, creating quality time with them, and a third one with all of them. Did it work? no, not really. My daughters and I are still working on creating more harmony. Time is on our side. I am not worried.

Zackery is a level 5 young man. This is CIBC’s classification for the most difficult.

His explosive meltdowns when experiencing pressure and anxiety, lashing out at whatever and whoever was standing in his ratio, hurting them, gave him his designation.

His anxiety is still an issue. But with knowing routine and routine outings and what he can expect on these outings, is making life for everybody much easier.

As a parent I walked for years on eggshells, proactively foreseeing difficulties for Zackery and trying to prevent them with distraction ahead of time. Calming his anxiety and making sure there is no pressure for him, were a constant stress in my life. I became high strung, always alert, and stressed out to the max.

PTSD followed for Zackery after the release from a 18 months home stay in a group home providing intervention and behavioral services to persons like my son.

After this stay I took Zackery home again. Everybody expected me to give him into government care. Doing this at that time, I felt was the wrong decision and a harmful decision to my son’s well being.

Zackery came home and the most intense part of my journey as a parent started. Almost every night after night he woke up screaming, hitting the wall and was “beside himself”. My nights were terror, days were constant exhaustion.

Many times  I thought I now reached the end of my rope; already had the phone in  my hand ready to dial 911. I didn’t do it. 

I intuitively knew one thing. If I let go of Zackery now, he would not only be placed in a group home, he also would be on heavy medication. I also intuitively knew that it was I who was supposed to take the lead in helping and changing circumstances for Zackery, not professionals. 

Giving responsibility away was not my lesson, accepting the difficult path to commitment in helping Zackery was for me to do.

And so I did. You will not believe that you “can move mountains” when you have to. Determination, self discipline, understanding , asking for prayer help and my confidence created a big change in Zackery’s life.

Featured

Bullied

Mad Jack – Nintendo 64

Being bullied or teased does not need to be a necessary part of growing up when you have a disability. But it happens a lot to our vulnerable kids. They often are easy targets to be mimicked or are entertainment for others.
It doesn’t matter how different your child is from the norm. What matters is that your child feels different from the others.
Being bullied and teased creates sensitivity which grows into hypo sensitivity due to humiliation.Your child naturally wants to withdraw from others as isolation feels safer. Reclusiveness later in life is often the result from years of not being able to trust people.
A bullied child experiences constant sorrow on a deep level. Shyness, shame, secretiveness, lying about it, powerlessness are his/her companions. Being bullied influences and changes your personality.
Your child might feel unworthy. Often he/she doesn’t think that anyone will understand. What does your child hear as guidance to cope with when saying something about a “bad guy” in school? Just stay out of his/her way.
Observe your child when you suspect that he/she is not the same anymore.
Does your child feel drawn to violent video games? Aside from the fact that these games are trendy now, many bullied children consistently prefer games with violent themes. It resonates with their pain and releases it. The violence creates the needed pressure your child needs to cope.
How does Zackery cope with the previous hurt of being bullied? Being a young man with significant developmental delay, he prefers ( and gets stuck) in one particular youtube video over and over again.
He loves to watch on youtube Nintendo 64 Jack in the box. Awful music is accompanying Jack who pops out of a box in an overpowering and threatening manner, chasing scared Tiny from box to box.

We need to Observe better

Are we going to the root of the problem, when we are trying to change a behavior
or a problem? Is medication going to help the way we want it to help? Is medication the answer to behavioral problems?

The pressure to put your child on medication is very real.
Medication seems to be one easy way to cope with difficulties.
But we are missing the point if we just look at behavior problems itself. We as
parents want behavior fixed. We often are worn out from annoying recurring
behavior. This is why we like to turn to behavioral therapists. We tend to rely on
them. They are the specialists. And they do a good job. With strategy in place for
everyone to work with, and often with great patience, we can extinct the
unwanted behavior. And now everybody is happy??????Not really! Very soon we
see that a new behavior pops up. What happened? We just exchanged one
problem with another. Why? We did not search for the root of the problem. What
we got as a result at best is managing and controlling what we often could not
bear to stand anymore.

When we are numb from recurring behaviors, it is difficult to quiet ourselves,
watch, observe and listen to what is really going on with our child. But this is the
necessary first step if we want permanent change.
I was incredibly busy with three children as a single parent plus working outside
the home. Dispelling pain experienced from Zackery’s behavioral difficulties was
all I could do. There was no time to think. And I was just hoping for things to
change and to become better.


The most difficult part for me and everybody else’s were Zackery’s meltdowns, his
hitting, lashing out, and sudden explosive behaviors. Many of them in public. I
was living on the edge, uptight and on guard all the time. And often I could not
even leave a caregiver alone with him, fearing for her safety.
His lashing out was assessed by every professional as aggressive behavior. Was it
really? Aggressive behavior is when someone willfully wants to hurt someone else. Was Zackery aggressive?


Defensive behavior is when someone wants to be able to keep his emotions in
check, but does not succeed. Coping with anxiety was for Zackery the root of his
behavior. And lashing out was and still is for him a poor way of handling
emotional pain. Things became better when Zackery ate regularly Pot brownies.
But what triggered anxiety and meltdowns which nobody could handle. In school,
the whole class left the room, when Zackery “went flipping”.
What was the reason for his anxiety? Restrictions! Zackery has a nice personality,
wants to please, and is very unassertive. Being denied something triggers fear. He
is not demanding. Fear is also triggered by certain people, authorities if he feels
unsupported by them.

When he is overcome by anxiety, Zackery lashes out and hits everything and
everybody standing in his ratio. Lashing out is his means of reacting to any
pressure. And it is involuntary, without intention and very difficult for him to
control. He is getting better though and is finding his own coping skills. More
about this later.


What did I do? How did I learn to cope? How did I lower his anxiety? And what
became a part of training for new caregivers? I avoided words like” no”, “you can’t”,” you are not allowed” and others like it. Restrictions trigger anxiety.
With time and trying out new ways of talking to him, it became clear to me that
distracting him before we had a problem was a good solution. And this demanded
keen observation from me. Looking for triggers, observing and listening to him
became priority. I give you one example. Zackery likes clothes. Imagine we are walking along a clothing store. He sees a t-shirt he likes and wants. I see it, too and know trouble is coming.


My proactive conversation with him would be as follows ….. continue walking
past that store …..” l know Zackery, you really like this shirt. And I know you like
red. This is your color. You would look so good in this t-shirt. You have such good taste”. I talk to him in an animated engaging way, praising him, validating his
feelings. Making him feel good and giving him the attention, he seeks. This is to
this day my way of distracting him, calming him, and making him forget how
important it is to him to have what he thinks he wants, needs and can be
obsessed with.


Today I am an expert is distracting Zackery. His smiles and satisfaction are always
his answer to my efforts and my reward.
What did Zackery teach me? He taught me to lower m~ self defenses, to be more
genuinely attentive, observant and intuitive.

How to Listen to all that is not Said

Wanting to get your point across? Feeling discomfort of not being heard or acknowledged? Being uptight and stressed out about it?

We often try to get our thoughts across to the extent that we do not allow the other person to answer. We might even finish their sentence.

Do you want to be understood? Do you think the other person wants to be understood, too?

When things don’t work, when communication does not get desired results, it is time to change. To hear with the intent to listen is very difficult. We seem to have lost the ability due to our hectic schedules and lives.

Impatience grows with encountering obstacles. We become numb from recurring consistent problems which do not want to go away.

Let’s look at us as parents. We are leaders, role models. If leadership is demanded, leadership is often denied. Parenting is not meant to have dominion over others.

To bring about change, we must attempt new avenues in communication. We need to listen with the wish to understand. Be open and receptive to the other person. Mistakes are not the problem. Identifying and correcting errors, turning failure into a new opportunity, determines the new quality of a relationship.

There is a great “can do” spirit in all of us. We all can tap into it in times of crisis. Have confidence! Risk responsibility! Know, that deep listening is a form of gifted receiving.

It is important that before you are going to talk to your child you need to quiet your mind. You do not want to fall again into the old trap of nagging and criticizing.

This following affirmation has made a big difference in my life, helped me many times in dealing with my children. I hope it will help you, too.

I am centered and poised in the flow of love and nothing can disturb the calm peace of my soul.

Say it over and over again. Until you feel a centeredness coming over you.

This calmness is essential to allow for a combination of intuition, observation and listening.

See what is positive, what is working. Focus on it, nurture, praise and let your child know what is good. Your child will be more willing to listen to you. It also helps to include him into your daily routine decision making. It shows respect and acceptance of him as a valuable person. By doing this Zackery became more receptive to my needs. He also was more wiling to help me with chores. He felt valued and a worthy part of the family.

Ask questions, investigate in the why!!!! And the what!! It is often covered up by anger and arguments. A deeper rooted issue is the answer.

Your child needs to know that he can count on you and that you are supportive.

Here is one example. I know a mother who told me about her son (developmental delay with Autism) and the help she sought from several behavioral specialists to get assistance with his problems. I know she is very receptive and sensitive to her son’s difficulties, but also his abilities and there is a lot of trust in that relationship.

Behavior specialists have good skills and tools. But these are often not enough to see deeper into an issue. I just talked about intuition. Most of the therapists encountered a young man who was not willing to work with them. In fact, realizing intuitively that his needs would not be met, he took their shoes and gave them back to them, saying with this gesture, “you don’t get it/understand me. Good bye”. His mother supported him, showing him the respect he asked for.

This young man knew after a few minutes already that working with this professional would be a waste of their time.

Zackery is another example. When I had interviews in finding a new caregiver, often just a look at the person applying for the job was enough for him to say yes or no. Zackery is very intuitive which makes up for the lack of his communication skills. Zackery is non verbal. Did I listen to Zackery? Yes, because a good relationship is most important. Sometimes it takes a while to find the right person. Including Zackery in this decision shows respect to him and values his “voice”.

Did I always listen to Zackery? No, and looking back onto certain situations, I would have had an easier life if I would have paid attention to his intuition and guidance. My biggest mistake was buying a house I did not feel good about. I ended up with a huge reno and a lot of headaches. If I would have listened to Zackery, I would have rented a house. Zackery gave the Powell River newspaper into my hand. He wanted me to read the “for rent “adds. He couldn’t say it, and I didn’t clue in. I dismissed his gesture. Much later I clued in, but it was too late.

  Quality Time

It is hard to make quality time and to satisfy everybody’s needs for attention. But we all try and are considerate, even if it means sacrificing our own needs for time for ourselves.

A lot of difficulties with family issues was put onto Zackery. And he sensed it. When quarrels between my girls and me became too much for him, he went into the carport finding refuge in our car. There he found some quiet time.

When looking at my family needs, I knew I had to find a solution. And I created three families……one family was one on one with Zackery……another one was just me with my two girls ….and another one us all together.

The last one was the most difficult one to do and was full of restrictions. I will give you an example.

Christmas is always a very special family time and after a nice turkey dinner everybody can finally open up their presents. This is what you think!!! We could not do this. Not that particular Christmas, but we learned from it. Zackery reacted with intense distress to the tearing of the gift wrap paper. He tried to cope with lashing out and hitting.

At that time, we lived in Terrace, BC. CLBC had a respite home there, which was always staffed, also on Christmas. In my distraught I called them, and they agreed to take him. Zackery got dropped off at the home and my daughters and I could continue with the evening (we celebrate December 24th).

Everything was fine, but it was Christmas time, a special time where the family should be together. Guilt crept in. What did I do?  Guilt took the best of me.

What did I do? I went to the respite home and brought him back to us. This was a mistake. I know, you, my readers, are assessing the situation better than I did at tat time. When Zackery came home, he remembered the noise of the paper tearing, he remembered that it was him who was “guilty” and could not be calmed down. What came next? I brought Zackery back to the respite home. This time he stayed until late evening. The girls and I had time together, could read all the cards, make phone calls, and enjoyed our presents. That evening I was exhausted.

I think my oldest daughter had the most difficulties coping with our unique family situation. All she ever wanted was to have a normal family, and she said so many times. Having a child with special needs creates an imbalance in the family, no matter how small or big.

We as parents need to make the best of it. Quality time becomes the answer. Spending time with everybody was the answer, but it was harder than I thought. What did I do?

I created some travel and shopping time with my girls.  Off to Prince George we went whenever we could. It was something to look forward to. When the girls were small, PG was a good idea. Later it became Vancouver when they were teenagers.

Making these trips possible was not easy to do financially. I worked outside the home and we lived in low- income housing. This helped.

These trips were fun, the hotel in Prince George was good and expensive. I always booked a fancy hotel and we stayed three nights.  A casino was close by. Being tight with money ( I actually did not have enough) I risked playing $50,- at the Roulette table. I am not a gambler and played safe. Stupid as I was with being a gambler, I put chips on either red or black.

Believe it or not, every time we went to PG, every time I went to the casino to make some money, I made $50,00. My money back plus additional $50,00-. My goal was $50,00. I knew this was the amount I had to pay for dinner at the restaurant.

I strongly felt, the universe was helping me and I was in awe. $50,00 was needed to pay for a fancy dinner for three. The hotel had a Japanese restaurant downstairs. This is what we had, dinner and a show. The cook was also a performer, throwing knives through the air, catching them, chopping meat and vegies like an artist before our eyes. We enjoyed the atmosphere tremendously.

And I felt so grateful to life and the universe. I remember being happy and at peace.

Counteracting Budget cuts- No Money


Building of Zackery’s Social Network

I hope to help you parents with this write up, hoping to give you ideas about what you can do to change a challenging situation for the better.
We all need to find solutions and often need to be creative when it comes to serving our special children. It is hard to find the initiative to change things. But I promise you, that both of you, and maybe even the whole family will benefit from creating a social group around your child.


If your child is high functioning with hobbies, find people who share his hobby wanting to spend time with him/her. Advertise, ask Family Support Institute In New Westminster for help to put a post up, go to your volunteer bureau in your community and see if you find people who are a match to your child’s hobbies.


Any time your time is replaced by other people who provide stimulation is a bonus for you. In addition it is time you do not need to pay from your funding. It is freely given to you as help.With this I mean that people who interact with your child want to help him and you.


We all know that systems are geared to finding solutions for the average situation. Many of our special children do not fit this category. They are outside this average funding pot. Their needs are higher and they are not met. Your needs as a parent are not met either.


For years this meant for me fighting with my government agency about money. It was an exhausting and frightening time of my life, full of anxiety.
Being a single parent with three children, one of them with great behavioral difficulties and high needs, I needed to match my funding to caregiver wages, and pay higher wages. There were many times I could not even leave a caregiver alone with my son, because he sensed a poor match and reacted with agitation.


Stress, exhaustion, anxiety about funding have taken a toll on me and my health. Faith in the universe to create justice kept me going. My faith became stronger in those years. 

I knew that I was the one who had to initiate change.  And I learned that the universe helps you when you help yourself. You do the first step.
Many of you parents have a formal support group, a Microboard or Society which supports your child. I created a Society. A society allows you to get volunteers from your volunteer bureau in your community. It also allows you to fundraise for financial needs, like for health needs your child has.
Volunteers became very important to me and Zackery. Not having many friends, they stepped in to help. We all together worked at ONE GOAL…..getting Zackery out of his room, his safe spot; making Zackery feel comfortable with people and strangers; accepting group situations;  ultimately joining into our social circle  and trusting people again. It was the time when Zackery suffered from severe PTSD. All of us, the whole group created a success story for Zackery.


Many times my volunteers came to visit Zackery, to read him a story for example, spending additional time with him. And believe me, Zackery knew intuitively who wanted to be with him  or who was paid to do so.
My social network was all about fun and great times. We had monthly parties. Everybody benefitted. I was lucky that many musicians played at my parties…..for free as a service to Zackery.We had a drumming circle, soft and happy piano music, violin concerts, guitar playing and singing to songs . One of our seniors took care of song material. With time my group got big with people joining from all walks of life.


Our parties became a fun time with chatter and laughter and good food.
Food was important. Everybody brought a dish. But YOU NEED TO PROVIDE  THE MEAT, the main dish.


Our circle was active and alive for 5 years. It was a big success and I would like to take this opportunity to thank everybody who helped. I also would like to thank the community of Powell River with its great musicians who did not hesitate in stepping up to bring joy to us.
What we taught Zackery was …
— trust
—-getting him out of his room and coming closer to the fun and chatter he heard. There is a photo of him in the hallway. A friend managed for the first time to get out of his room. She is reading to him in the hallway, bridging over any anxiety. She actually was getting him into the group for the first time