A little bit about our family:
After being married in 1988, the first few years had us experiencing a couple of miscarriages. So we decided to go the adoption route.
Our first son, who wants to remain anonymous at this stage of the blog - he thinks we're nuts, who is 20 now - moved in with us when he was 18 months old. It was a fairly smooth process. We were in the process of adoption with DCYF for about 1 year: taking the classes, doing the home study, going to adoption parties, and looking at the books with waiting children - the whole 9 yards. As we went into the office one day, we were told by the woman who was working with us, that she had seen a file that day and saved it for us. We went to meet him and that was it!! He was a premie, born at 2 pounds 11 ounces. Our #1 son, at 18 months, came to us complete with a VNA nurse, 24 hours a day on oxygen & hearing aids (people were thinking he was deaf since he did a lot of yelling). He's not. Son #2 came when he was 2 1/2 years old, also a premie at 5 pounds 6 ounces. After about a year, we had started looking through books again and saw a little guy, Willie now 19, sharing the same birthdate as myself and our first son. After pursuing him, we met him and were told he was starting to show characteristics of autism but we all felt at home together. In fact, my husband was told that Will had issues with adult men and not to be surprised if he did not pay any attention to him. Our first meeting at his foster home had Will hanging out next to Frank and holding his arm. He moved in soon after. At 2 1/2, we were the 4th home he was placed in. This adoption took a little longer since his birth mom did not want to allow any of her children in the system to be adopted. Finally the social worker was able to convince her to sign the papers (mom was ill and passed away about a year later). Number 3 son, who also prefers anonymity (he just rolled his eyes when we mentioned we would be doing this), was our 'surprise' and joined us in 1998, who is a typical 13 year old. We decided to do this because we are hoping to share our trials, our information gathering of services that proved to work for us that may work for others and hope that others can add their experiences to ours that may be beneficial. I am hoping this may also be somewhat therapeutic.
Right now we are also living in the world of elder care with parents being 85, 89, 90, all with a variety of heart conditions, kidney condition and mental status. We hope our experiences with senior services will help others out there, again asking others to share theirs.
Our autistic behavior issues:
Didn't I just answer that question 2 minutes ago? Didn't we go over what we would be doing 5 times already this morning? You know the rules about jumping in the house and yelling along with your radio!!! The rule is only 1 thing at a time - you can be on the computer but no radio or changing the TV station to something you want!!
Probably things we talk to all our kids about - I know the first 2 I have said to my other two boys, even lately. At 20 and 13 you would think they would get it. But Will is a whole other story. I have always said, I would love to get into his head - just ONE DAY, to see how he processes information. Since that is not possible, it is all guess work.
So a system of VISIBLE rewards goes into place - similar to what a lot of parents do for smaller children. School uses one for all his classes: he has his behaviors he has to be careful NOT to do, like banging on the table or making loud noises, talking about other things (like what he wants to watch on TV or asking for his radio). It is time for schoolwork. He gets checks or smiley faces on a sheet. When he gets back to his homeroom, he can get rewarded with listening to the radio or computer time.
I do the same here (although I will admit I am not so good at doing it at home. I tend to get side-tracked by my other guys, my mom, hubby calling asking about stuff, the dog and of course work!!!). But when I do it, it works. So if Willie is loud with his radio or banging on the table (which he does when he is excited about something) or whatever, I take out a paper and draw my checklist and his reward. He gets the radio/computer/TV whatever IF he gets 5 checks or smiley faces because he kept his hands quiet, his feet quiet, his voice quiet, whatever behavior he exhibits that I need to stop. He gets the checks maybe every 10 minutes and it works. I show him when I give him a check/face. I also show him if I need to TAKE AWAY a check/face which gets him all nervous and he stops again.
Special needs children: Medical:
As a lot of you out there can attest to, having a special needs child(ren) can be rewarding and challenging. One big thing can be with medical care. I have to admit we have not really had anything serious with any of our boys although Willie, one New Years Day, did not want to wake up. We ended up taking him to our local children's hospital and, long story short, they 'think' he may have had a seizure during the night and was in that deep sleep state. But because his EEG is not 'normal' in his 'normal' state it was hard to verify. There were no side effects and no noticeable changes in any part of his behavior or learning styles. So how do you know when to panic with what is wrong and when to say 'let it pass'? This is especially hard with a non-verbal child (like Willie).
I started to take note of small things that would happen. For example, Willie will get drooly sometimes. He has been diagnosed with apraxia but when it is more than normal, when he was younger it was followed by a cold a couple of days later. Now it seems it is tied to allergies. A good alllergy medicine works for both as soon as 24 hours goes by and sneezing starts -- it helps him to 'nip it in the bud'.
It also helps to have a good rapport with your pediatrican. Ours has been great - he takes all the pieces of information we give him (no matter how small) into consideration and helps to any end. He has also been a great resource for other professionals to help. The nurses also usually get a big hug from Willie when he's there.
Get to know your pharmacist - another great resource when you need something fast. They have a wealth of information. I never realized the training they go through - besides school they 'intern' at nursing homes and hospitals.
Friendships for our children:
Not to say that we have never been 'shunned' if you will. I know that sometimes in the past people have invited our other 2 sons to a party and not Willie - their perogative. You can't force people to like someone or understand someone - maybe they thought we were going to leave Will and they did not know how to handle him! We were on vacation once in Virginia, maybe 7-8 years ago, in a small town near the West Virginia border. We went to a very small make-shift church near where we were staying that has retired priests taking turns going to. Willie was taking part in his way which did not endear us to anyone!! It came time for Communion; Willie had made his First Communion so he came up with us. The priest refused to give him the host!! I told him it was Ok; he gave it to those who went around us. I stood my ground and said again it was Ok. After he gave Communion to all the others and saw I was not moving, he gave in and gave it to Will and myself. Once when Willie was about 4 or 5, we were at a local restaurant. Will was making his sounds and laughing loudly as he tries to get our attention. One woman in the next booth asks us to quiet him down or leave. My mother tried explaining his situation and this woman responded that she also has a special needs child and he never acts like that and we better learn how to teach him to be quiet!!! Okay, sure! Just tell yourself - patience is a virtue!! Other people may be having a bad day!! Say a prayer!!
The article commented on the school system. I have to say we have had great teachers. Our communication devices are used for everything, even sent home daily for us to use. We are supposed to take it with us when we go out too. All of our group is treated with respect. In fact, our teachers seem to take on our children as if they were their own children, being very protective of them. Our group is integrated with the other students in the school as often as possible and I have experienced times where we will be at Walmart, for example, and other boys will come up and say "hi" to Willie and try to talk to him. In kindergarten, he did have one boy who became a good friend, who wanted to learn sign language to talk to Willie and he and his mom would walk home with us.
Maybe because I was a child who only had a few close friends, I find our situation Ok. Someone with disabilities or not, we are who we are. We need all adults to constantly teach their children to respect all, accept those who are different - our children had no choice in how they were born. We know teens will be teens and it is their job to tear apart everybody and everything. But it remains our job to constantly reinforce the fact that everyone deserves respect and consideration. It is the world's loss if they chose not to become friends with our children/young adults.
Taking Time for Mom Affects Will:
Will's teacher called me the other day asking me if Will was feeling Ok, had he been sick or not feeling well at home or is there something going on at home. Apparently he has been crying at school, being a little obstinate, asking to see the nurse to try to come home (this is not new - he does this to try and come home to watch movies). His teachers have gotten use to him and can usually tell when he is testing them or is really ill.
So I filled her in about my mom and what I have been doing. Putting 2 and 2 together, as they say, my time with mom (even if he is with me) has had an effect on him. The routine is broken, we go here and there and sometimes have to move fast. The tougher times came when I was not sleeping in my bed and had to get mom up and to the bathroom, get her breakfast and not get him ready for school and on the bus -- his brothers helped. But he did not like that I guess and was upset at school. He is so low-key all the time and usually very easy-going, it is hard to believe he is so affected by this. I am around just not 'catering' to him.
I know that even when he is with me and I am taking care of mom, he is always interrupting whatever I am doing to ask about something he wants, asks about where we are going next, where's dad, telling me what he wants to eat. I 'hear' from him about every 5 minutes. I hate to admit it but it gets exhausting and aggravating with the constant interrupting. I will write things down about what we are going to do, which usually helps, but then he comes with the papers showing me what's next and gives me the sign for 'wait'. Yes Will you have to wait for that.
With mom in the hospital, when we visit, he wants to see her but then after 5 minutes he wants to come home. So we put on the TV so he can watch his shows but we still get the 'home' and 'wait' signs, 'eat pizza' and 'wait', 'computer' and 'wait'. Then he'll wave to her, like saying 'good by'. At first it's cute but it gets old fast.
So I pray for patience at the end of the day and look forward for the weekend and wine.
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4 Signs of Caregiving Stress Overload
ElderCarelink email posts 4 signs that should not be overlooked by you, the caregiver, or a close family member or friend. They report that even though the immediate caregiver may not be helping in direct care, the mind is never far from the needs of the older person, thinking about meals, falling, medications. Take the opinion of a family member or friend if they are telling you that you are stressed. Four signs: you skip your own physicals; you isolate yourself from others; you eat and/or drink too much for good health; you are short tempered with the elder, your spouse or your children. If any or all of these sound familiar, take a break no matter how short in order to recharge. For more information on caregiver stress see ElderCarelink
You can check out my ranting and stream of consciousness writing about looking at adult service providers with Will.
A Caregiver's Poem
I was looking through a 'Caregiver's Blog: Senior Care Support' and came across a poem that was shared by a writer, Dana, from the blog. The poem was written by Becky Netherland and Dana's grandmother shared it with her. I thought it was great and there is not much to say about it - just read!!! Enjoy!!
(picture from Caregivers Blog)
I’ve traveled paths you’ve yet to walk
Learned lessons old and new
And now this wisdom of my life
I’m blessed to share with you
Let kindness spread like sunshine
Embrace those who are sad
Respect their dignity, give them joy
And leave them feeling glad
Forgive those who might hurt you
And though you have your pride
Listen closely to their viewpoint
Try to see the other side
Walk softly when you’re angry
Try not to take offense
Invoke your sense of humor
Laughter’s power is immense!
Express what you are feeling
Your beliefs you should uphold
Don’t shy away from what is right
Be courageous and be bold
Keep hope right in your pocket
It will guide you day by day
Take it out when it is needed
When it’s near, you’ll find a way
Remember friends and family
Of which you are a precious part
Love deeply and love truly
Give freely from your heart
The world is far from perfect
There’s conflict and there’s strife
But you still can make a difference
By how you live your life
And so I’m very blessed to know
The wonders you will do
Because you are my granddaughter
And I believe in you.
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