Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


Leave a comment

What is Therapeutic Daycare?

When my grandchildren were small, due to their mental disabilities, my doctor recommended a Therapeutic Referral for Daycare. At first, I thought the word therapeutic related to their disabilities, as in – if they attend daycare everyday they will benefit from the repetitive schedule and interaction with peers. What I didn’t realize was that the word therapeutic referred to respite for me, in case I became overwhelmed while raising disabled kids and lashed out at them! I learned that mentally disabled children are deemed at-risk, which didn’t do much for my confidence as a parent! And for the longest while, when anyone in the medical field asked me what services the children were receiving, I would explain they were in therapeutic daycare, and wondered why it was always met with a blank expression!

I found a rather good webpage focused upon daycare in the Hamilton, Ontario district. This includes details on therapeutic daycare. It can be found at http://www.hamiltonhealthsciences.ca. In order for your child to attend therapeutic daycare, a referral has to be made by your family doctor, or public health nurse, or a social worker or pediatrician, or other social services or health agencies.

If you live in the Hamilton, Ontario area, and need to apply for a child care subsidy or to see if your child qualifies for therapeutic daycare call 905-546-4872, but be warned, the most difficult part of the undertaking, is not applying or qualifying for therapeutic daycare, but actually finding an opening for your child in a local daycare centre. I recall having to call at least seven day-cares before finding one that said they MIGHT have an opening within six months, after which the referral and subsidy grant lapses and you will have to begin the process all over again! The task can be frustrating and exhausting while trying to keep on top of the situation, which is strange when you remember that therapeutic daycare is intended to give the parent respite!

Advertisements


Leave a comment

A Message To The World From My Mentally Disabled Grandchildren

Is it just my imagination or are people becoming more hostile? I was standing in line at a fast-food restaurant waiting to purchase a coffee, when a young man with obvious mental health problems entered and began walking briskly from table to table shouting hello, waving to the patrons and smiling broadly. Unfortunately, most of the customers turned away when he spoke to them, deliberately ignoring him while stuffing food into their mouths or continuing their conversations with eyes fixed firmly on their companions.

Gladly, the young man seemed unfazed by such ignorant behaviour and made his way to a line-up, where he was met with much the same attitude. Then, disappearing for a few moments, he unexpectedly resurfaced at my side, took my hand in his and kissed it gently, and said – Hello! Hello! Have a wonderful day! – but not one patron cracked a smile, and all eyes were averted in embarrassment. After purchasing a pop, he left the restaurant and I swear I head a collective sigh of relief from the patrons.

You know, this kind of attitude toward disabled people has to stop. I can’t help comparing it to an experience I had as a child. I remember my mother asking me to run an errand to a neighbour’s house. She had borrowed something and needed it returned. She gave me the address and I headed out. When I reached the house I tapped lightly on the door which was opened by a blind woman. I stood looking at her horrified because, instead of eyes, it looked as if someone had pushed two hard-boiled eggs into her sockets. To my own young, perfect, eyes, the scene was frightening, but she sensed this right away and urged me not to be afraid, explained she was blind, asked my name and then invited me inside. Leading me into the living room I was introduced to five adults who were sitting, chatting and laughing, and drinking tea. The atmosphere was alive, and when I was offered cake and milk, I couldn’t help but get caught up in their warmth and friendliness toward each other. Even at my young age I sensed the love and compassion these adults extended to the blind woman. She obviously had many people to call upon if help was needed.

Is it still like that today? Sadly, I don’t think so.

Over the years of raising my mentally disabled grandchildren I have witnessed over and over others’ impatience, coldness, indifference, anger, and denigrating attitude toward them, causing the children more anxiety and low self-esteem while trying to survive in this world. So on their behalf, because they don’t have the mental capability to do it, I am writing this Message To The World in the hope that someone, somewhere, will read it and have second thoughts when turning their back to a disabled child.

 A Message To The World On Behalf Of My Mentally Disabled Grandchildren

  • Dear Relative:Why don’t you like me? I like you! I’ve seen you laugh with your friends and other members of our family, but you never laugh with me. In fact, I always seem to make you frown. Why is that?
  • Dear Teacher: I’m sorry I can’t always keep up with the other students, but I have trouble with reading. I don’t always understand the story you are telling, or the math you are teaching, and when recess comes I try my very best to stay out of fights, but the other kids deliberately tease me and make me angry.
  • Dear Waitress: Please be patient with me. I try to understand the menu, but it takes me longer than others to decide because my learning disabilities make reading difficult and I’m trying my best to count my money. I realize you are busy but it’s rude to dismiss me with a stern look and sigh as you pass on to the next customer.
  • Dear Neighbour: Why do you always invite other children on the block to your kid’s birthday parties, but never me? I like to have fun too, and I’ll buy your child as nice a gift as the others’ do. What is it you don’t like about me that makes you refuse to have me in your home?
  • Dear Friend: I’m sorry if sometimes I say inappropriate things to you. It’s not that I don’t like you, it’s just that sometimes my brain gets overly frustrated and makes me say things I shouldn’t. I love you, please forgive me and be my friend again?
  • Dear Grocery Shopper:Why did you tut gruffly and roll your eyes at me when my emotions broke down. There were so many people in the store, I got anxious and couldn’t cope. That’s why I had a tantrum and spoiled your grocery shopping but, you didn’t have to make a big show of having to walk ALL the way around me to get to the next aisle.
  • Dear Church Member: Please don’t get upset when I can’t sit still through a whole hour of your worship service. I have ADHD and it won’t let my body or brain rest for long. Instead of getting angry at my fidgeting, why not pray for me. That way people will know you really are holy, instead of just pretending to be.
  • Dear Bus Driver:My caregiver is giving me more independence and I want to make her proud of me, so please don’t raise your voice when I’m unsure of how much your tickets are, or when I keep asking you if the next stop is mine.
  • Dear Pool Attendant: Please don’t sigh loudly when I soil your pool. You see, I’m used to wearing diapers, but I was having so much fun that I forgot I didn’t have one on. All the swimmers seemed so angry with me. Are you angry too?
  • Dear Caseworker: I know you mean well, but when you tell me I have to go away for a while so my family can get some peace, it breaks my heart because it’s not my fault. My brain doesn’t work as well as yours and makes me loud and aggressive.
  • Dear Mother: Why did you drink alcohol and take drugs while you were pregnant with me? As you indulged in your secret pleasures, didn’t you care about the struggles I would have to face each day? And where are you? Don’t you want to see me? Even though I don’t know you, I think about you every day. Do you ever think about me? Do you love me?
  • Dear Father: Why didn’t you use a condom? Didn’t you care about the struggles I would have to face each day as a fatherless child? And where are you? Don’t you want to see me? Even though I don’t know you, I think about you every day. Do you ever think about me? Do you love me?

Above is just a sample of the struggles my grandchildren face each day. And people who consider themselves normal have the audacity to rudely shun or ignore them when they are trying their very best to cope with the challenges they have been undeservedly handed. So on their behalf I ask that whenever you meet up with a mentally disabled child, assign at least one moment of your life to trying to imagine the difficulties that child faces each day, and give them a smile. I know it will brighten their day and, who knows, it might even brighten yours!


Leave a comment

Hamilton Arson Prevention Program for Children (HAPP-C program)

Over the years, I’ve come to recognize when my grandchildren become overly anxious about a home or school situation, their disabilities (ADHD, FAS, Intellectual Disability) cause them to do, not really strange, but certainly unrelated things like… oh, I don’t know, setting fire to the house for example.

When two of my grandchildren recently learned their younger sibling would be entering a residential care facility for several months in order to learn behaviour management, they instantly withdrew into anxiety mode, with one setting fire to objects and bedding in her room, and the other building a fire behind a dumpster at a local school.

Over the years, because I have become acclimatized to their strange ways to the point of deeming them normal, I didn’t recognize the severity of this behaviour until I nonchalantly passed the information by one of their caseworkers and noticed the horrified expression on her face.

On her advice, I subsequently called the program coordinator of the Hamilton Wentworth Fire Department’s Youth Program who scheduled an appointment with me and the children and had them answer questions about fire safety, and then spoke to them on the hazards of fire-setting.

About two weeks later, the children attended a meeting at the Child and Adolescent Services of Hamilton, Ontario (see post: Child and Adolescent Services of Hamilton, Ontario) for a fire-risk assessment, where they were assigned separate counsellors who interviewed them and then rated their risk of re-offending. This information was subseqently passed on to the children’s school so the staff could be aware of the possibility of one of the children starting a fire at school, and to the various caseworkers involved with the children.

 If you would like information regarding the Hamilton-Wentworth Fire Department Program, please call: (905) 546-2424 ext. 7794 or (905) 546-2424 ext. 1380


Leave a comment

FASD: Foetal Alcohol Spectrum Disorder

Three of my mentally disabled grandchildren have a confirmed diagnosis of FASD (Foetal Alcohol Syndrome Disorder) a term used to describe the full range of permanent birth defects caused by prenatal exposure to alcohol, FAS being one of them, and knowing the habits of my daughter when she was a pregnant teen, I am sure all of my grandchildren suffer from FAS.

But how to deal with the problems and behaviours associated with this diagnosis?! One of the ways to help my grandchildren with the challenges they faced living with FAS was through a consistent daily routine. It soon became obvious to me that allowing my grandchildren to live each day identically afforded them the reassurance that YES they could cope with the obstacles life placed before them without becoming overanxious or withdrawn. And that YES they could enjoy their playtime with peers as long as they understood the routine and what was expected of them, and that their daily playtime would hold little change, (sorry, but children’s large birthday parties are a huge no-no for children with FAS. They feel out of control and out of their depth re their coping skills). I also discovered that all of my grandchildren needed a solid anchor, which for them was me. As long as I was in view and easily accessible their demeanor told me they at least believed they could cope with daily living.

And even today, many years later, despite the fact that I am usually not more than ten feet away from any one of them, they constantly “check” on my whereabouts with “Hi, Mom!” or “I love you, Mom!” whenever they change rooms, or walk downstairs from their bedrooms. This has become their strategy to confirm their anchor is still well-chained, and firmly fastened! (Giggle: I am blogging in the kitchen and my granddaughter just walked in from the living room and said “Hi, Mom!” even though she saw me just a few minutes before. Which validates I really do know what I’m talking about!) If you are a caregiver to a child with FAS, expect to be “peeked” at many times throughout the day. No, they are not spying on you, or trying to listen in on your telephone conversations, but are just comforting themselves with the fact that you are available should a problem arise that they feel they can’t handle. Without their anchor close by, they will be less likely to try to work things through themselves.

There are many books available on the subject of FASD, and if you feel your child might be suffering the challenges of FASD, call your doctor for an appointment and ask for a referral to a paediatrician who specializes in children’s developmental delays. Although FASD is not an actual diagnostic term, there are three diagnosis that fall under the umbrella of FASD: Foetal Alcohol Syndrome, Partial Foetal Alcohol Syndrome and Alcohol Related Neurodevelopment Disorder. To get a diagnosis under the FASD umbrella means your child could qualify for specialized support programmes and other positive community resources. Ask the paediatrician any questions you have, how to manage your child’s behaviour, and request to be directed to workshops and resources in your area.