When the grief is unbearable

Jon and Desi  2011

Yesterday we went to apply for DD services. It was a bit hard because Jon got ODD in the middle of it and argued with me over stuff that I was telling them.

When we got done, the woman stated that they would look at his qualifying factors and decide if it was a matter of “won’t, not can’t”.

My insides just CHURNED! Lady you have no clue. My heart was once again ripped out from my chest when someone did not understand my son.

Today the school teacher sent me some help and I sent it over to the DD lady.

Terry — Below are my comments in regards to Jon’s functional abilities based on the 7 Life Activity Areas:

SELF- CARE

• For Prescribed Medications:

Jon is unable to consistently obtain the correct dosage of his medication. He is not able to identify the medications he takes or the correct amount of each medication that he takes. Jon is not able to understand the implications of not taking his medications. He does not remember to take them — he has to be given his medications each day by a parent or sibling in order for the correct medications and dosages to be taken.

(Added info by Terry Quinn-Jon has to be watched to see that he will swallow the medications or they often will be stuck in his pocked and land somewhere in his room.)

SELF- DIRECTION

• Jon does not maintain healthy relationships. He is easily talked into inappropriate situations — skipping school.

(Added Comment by Terry Quinn- Jon will go with a stranger if the stranger offers money. This did happen one time.)

• Jon ‘reacts’ to situations in which he is frustrated or uncomfortable. There have been two occasions at school where Jon has slammed doors and hit people causing them physical harm. He also throws items. Jon reacts without processing the possible results of his actions.
• Jon is not able to independently arrange medical appointments. He is unable to identify the names of his doctors or the way in which they can be contacted. Jon cannot remember the date and time of appointments.
• Jon does not follow through with decisions. He makes appointments to meet at certain days and times but is unable to remember the arrangements therefore does not follow through. He also jumps from one task to another without fully finishing the first.
• Jon does not comprehend the cause and effect of decisions. This is a documented part of his disability. He will spend an entire weeks paycheck on a tattoos without regards to the fact that he will then have no money to spend for the rest of the week.
• Jon continually repeats inappropriate behaviors in spite of regular consequences. He is has multiple suspensions from school for repeated behaviors. Another example is Jon having multiple no shows at work — if it were not for the communication between Jon’s mother and his manager he would not continue to have his part time job.

ECONOMIC SELF-SUFFICIENCY

• Jon is unable to appropriately budget his money. He cannot approximate how much money needs to be saved in order to pay bills throughout the month. Jon lives ‘in the moment’ and does not understand that he needs to save money for expenses later in the month or even later in the week.
• Jon needs frequent prompting to be on time. He has to be prompted minute by minute to get ready and be ready on time for his ride to work and school — example — Jon get dressed you have 10 minutes; Jon brush your teeth you have 5 minutes; Jon put your shoes on you have 2 minutes — and he has to have a count down while performing tasks … ex: Jon you have 2 minutes left to finish getting dressed. He is often late to class because he gets distracted and loses all track of time to get to class — a special plan had to be created for Jon because of his excess tardies to class.
• Jon has had numerous no show/no calls to work. He would have lost his job long ago without the open communication between his mother and his manager.

I am very grateful to Jenn, Jon’s teacher for all the help that she has given to us. She is an angel.

However last night Jon came home totally stoned out on pot. I was shocked that he would come home in that state. He usually tries to hide this behavior, even though we have highly suspected that he was doing it.

I was flabbergasted! I have a 17 year old daughter, Deserai, whom I can’t set an example, that it is ok to live here and get high. So I had to send him out. He is likely living at his drug friend’s home now.

I feel like I am loosing one child right now, and I could not stand to loose two.

I know Jon is helpless to take care of himself forever, but he lives at this drug kid’s house anyway. The only thing he wasn’t doing is sleeping there.

Then too, sometimes he snuck out at night to be with this guy.

Right now Jon is in an avalanche of danger and only God can help him. He won’t listen to anything I say or do. He is determined to have his way.

He could potentially loose his job and I don’t care right now. If he looses everything, will it save his life?

I don’t know. I don’t know if it is possible for him to recognize when things are totally ran out.

Am I going to have to live a life with him as an “in and out drug addict”?

I can’t. I am not physically strong enough to handle that. He would have to play that out somewhere else.

Am I throwing him to the wolves? Jon was thrown to the wolves the day his birth mom got pregnant with him and never stopped drinking. I didn’t do this to him.

I have raised him and fought for him almost every day of his life. Nothing has ever been easy for Jon and I. It has always been painful.

Why did God pick our home for a child who is so painful? Because he needed someone.

He needed someone who would love him in spite of the pain.

I guess even though I have suffered greatly, it was a good choice for Jon.

The theory that these kids are self medicating is probably true. However drugs are not a safe way to self medicate. They can and usually will lead to other usage, possibly alcohol and worse.

They can lead to death also, so how is that a good thing?

Drugs might be self medicating, but they are a path of destruction and these kids don’t have the ability to self regulate that. They are not social drug users.

The addiction to drugs will cause people to do about anything eventually to get them. Stealing? Jail?

Oh also, I recently saw a video that shows that it is PROVEN through MRI’s that marijuana causes brain damage in teens up to 25. Their brains are still forming.

So they are damaging an already damaged brain. I have noticed lately that Jon has been a lot worse. At times he seems almost like a vegetable that doesn’t care about anything, doesn’t want to do anything, and does not understand much at all that I am trying to help him with.

Life on earth is often about suffering something, sometimes.

Somehow, I need to find peace with this though, as it is tearing me up.

Sadly this is the course for many parents of children who have FASD. They were born drug addicts and when they pick up that drug later in life, they take off where they left off in the womb.

How much more do I now want to spread this message, that it is so unsafe to drink while pregnant. If you are pregnant and drinking, you are sentencing your child for life of pain. Please, PLEASE hear my heart. Give your child a chance. This world is not an easy place to be in when you don’t have that against you. Having FASD just makes it that much harder.

This mom has a huge ache in her heart tonight and all I can do is pray. That is a big thing though, for I know that God gave Jon to us and therefore, I have to trust HIM that God has a way out of this mess for Jon.

Lord, please put your biggest and strongest angels with Jon now. Stop him from any danger. Deliver him from the desire to use drugs. Open his brain up to see the danger he is acting out. Give him a chance God. Please, give him a chance………

kidznlildogz@aol.com

It’s Cold out there

I had removed this post as another parent didn’t understand it. However I am about to post something that is progression to this post, so I am adding this back into my blog. It will help today’s message make sense.

Well this week I actually hit my limit. I had to attend three drug meetings with Jon after he got caught at school with pot and other kids, about to smoke it.

I didn’t want to go to these meetings. I thought since Jon was 18 that he could attend himself. Why punish us parents? However I am glad that I went. I learned some things that were helpful and I saw parents struggling with their possibly neuro typical kids too. It was good to get that perspective. Not all issues are FASD. Some times they are just teenage stuff. I should know that, I have raised nine kids. I just didn’t have near the issues with the other seven, but they did have their times with the world’s temptations too.

Ok, so fast forward to meeting number three, this past Thursday night. Everyone is getting their turn to talk about what is going on. I have been dealing pretty heavily with Jon of late because he doesn’t want to go to work. Well no one just loves to go to work, but Jon’s emotional ability is about half his age, so he is treating his job more like a child would. I don’t want to work, so I just call off. It doesn’t matter that I have real bills to pay. I don’t have a clue what real bills are. I can’t manage money. Doesn’t money grow on trees anyway?

That type of magical thinking is where kids are, but by the time you are 18, you should have a little sense of responsibility. It just isn’t possible for Jon though.

To get Jon to work at his very part time job, I have to manage his time. I have to tell him when to get dressed for work. Sometimes I have to watch him get dressed, or he just won’t do it. He will lay in bed until he is late.

So we were having this battle. Two of his friends had birthdays this week and Jon had put on the calendar at work that he wanted five days off to celebrate these birthdays. FIVE DAYS? WHY? Only Jon understands why.

I told him that he could not take that many days off, as he won’t get enough hours in to work that week to pay his bills.

He insisted that he was going to get that many days off and there was nothing that I could do to stop him.

I had called his job on break to verify that Jon was calling off again. I found out that he was.

I came back to the room and confronted him with that. Jon blew up and used some language that described how he was feeling about me at this time.

So I said “OK Jon, I am done with you. ” I walked out of the room and left that meeting.

I went home and locked all my house windows and doors. Jon wants to be an adult, make adult decisions about his job. Jon can live life as an adult out side my home. I was just done.

About 9:30 my doorbell rings. Jon is outside. I didn’t answer it. Then I get a call. It is his councilor from the program. I tell him that he doesn’t know all that we have been going through with Jon and I am sorry but I can’t explain it all. I am done arguing with my son though and he is an “adult” by the worlds standards. So please don’t worry about him. He has lots of friends and he will find one to stay with.

So he left and eventually so did Jon. However he called me about an hour later and used some more of that nice language with me again. He informed me that his clothes were in my house and he would get the police to help him get them out if I would not let him in. I just hung up the phone and prayed. I don’t like dealing with the police, but if that is what I was going to have to do, then so be it. I cannot spend my life arguing wtih my son. It has worn me out. This is not about this week. This is about Jon’s whole life and how he doesn’t want me to have any part of keeping him on the right path.

So I was DONE DONE DONE!!! I was physically spent. I went to sleep.

Come morning and no Jon sighting. I called the school to warn them that if Jon came to school, he would not be medicated as I kicked him out the day before and he didn’t have his meds with him. Of course I have to protect them from any anger that Jon might spew out on them.

Well then a couple hours later Jon calls me. MOMMY, PLEASE HELP ME! I slept in the park last night. It was so cold. *yep it was 24 degrees that night*. I want to come home mommy. I can’t do this mommy. I can’t take care of myself out there Mommy. PLEASE, PLEASE LET ME COME HOME!!!

Jon, I can’t argue with you any more. It is taking mommy’s heart away.

MOM, I won’t argue any more. I will go to work. I promise. I will do anything mom. PLEASE PLEASE HELP ME???

Jon, will you take a drug test each month?

YES MOM I WILL!!!

Ok, he says he won’t argue. He will take a drug test. I am caving. Maybe he learned something in the cold night. MAYBE. One can hope.

I let him back home and he was so tired he slept all day. He hasn’t argued with me yet and he went to work tonight.

Do ya think that it will last??????? To be continued………..I will let you know………….

Lord, Please let it last. Please don’t let him forget this one lesson. Please imprint this on his brain and over ride his memory loss for just this one thing? Thanks Lord. We both would really appreciate that. I love you Lord.

Edited to Add:

Jon is like a horse. He needs a bit in his mouth to keep him on course. Without the bit, he runs wild.

The phone has always been the bit, but lately it has not worked as well. The big problem is online you cannot turn it completely off so people can still call him. I have to call in to have it turned completely off and that is a hassle.

So now I have told him, if you don’t come home in time for work, don’t come home, the doors will be locked.

I am using it as the bit. Not kicked out, just stay out and he knows what the plan is.

I am going to find out how to do a drug test too.

That is another bit.

Mike and I have always discussed that we can’t kick Jon out. He can’t make it. We had changed our language to fines, grounding, phone off etc.

BUT, now we have a new one.

That night I needed Jon to FEEL like he was OUT. He can survive one night, though it is not pleasant. I needed him to THINK that he was going to have to live like that.

Yes I did let him back in. But now it is another bit and he knows it. We have already discussed that.

The biggest problem though is that I am NOT SURE that I can handle him for life.

So he might have to go out on his own, but I am looking for services for that. Not putting him on the streets.

He is comfortable at home and may not like that either, but it may have to happen.

kidznlildogz@aol.com

When you can’t talk

This week has been one from hell, is seems, but I can’t share about it. Sometimes life is just so personal and I just can’t talk about it on a public forum. It was about the kids with FASD though. They just didn’t do well this week. It was awful. It was one I just don’t want to repeat, ever.

I think FASD is like that. Sometimes kids/adults with FASD just have really bad days. I mean REALLY BAD. It seems that life for them is like riding a roller coaster and the hills and valleys are frequent. I am ready to get off this ride, but I feel locked in my seat and crashing around bends, screaming “Let me off!”, but getting off isn’t possible. The motor is broken. It was damaged by mood altering drugs and alcohol and only a miracle can change that. Not that God isn’t the author of miracles and I am one who is certainly not limiting Him. I believe for the very best for my kids all the time. For now though, each day, I need His grace to deal with the ride.

So this week we were on the top of the coaster and free falling down a mighty long hill going 200 miles per hour and at the bottom, we crashed. It was just awful. That is all I can say. I am still trying to recover from the crash. I am not well. This ride took my physical body to the bottom too.

 I will recover. I always do, but I just want off the coaster. I can see that I am still strapped in and for a few days it appears that we are going to coast. I hope so at least, but then I don’t know when the next bend is, or the next hill, or drop. I don’t know when we will suddenly pick up speed, or fly over a top and crash again.

 I can’t afford the luxury of having fear of what is around the corner. That too, is a dangerous part of the ride. I have to work at letting go,  trusting God and staying close to Him. I have to continue in prayer for my kids.

Every day a little more of my heart, lets go and trusts God more with my adult/almost adult children. I have to. It is more then I can handle alone.

 I have to keep talking to myself. The worst that can happen, is ok. It has to be ok. I can’t afford to spend my heart in worry and fear. The worry and fear is part of the ride. I have to some how, some day, get off the ride. Thirty one years I have been raising children. I want to feel that they are successful adults, that have their own lives.

 It isn’t that way with FASD. It has robbed the two kids/ young adults, that have it. FASD stole their freedom in many ways. It is sad. I get sad. I can’t change it though. One more part of the ride, to learn to accept the things that I cannot change. To let go and let God.

 He has to have the ability to bless their future. He has to take the things that they were robbed of, and turn it around for good in their lives. He is our only hope and we will never stop hoping.

 So though I can’t tell you the details of the week, I have shared the feelings. The feelings of living with FASD. Sometimes I look around me and see others who think life is hard. They think life is hard when they have it seemingly easy. Once I asked God how to deal with that. People would come to me and say, “How do you handle nine kids? I can’t stand the one I have.”. It would make me mad. You don’t understand how easy one is. Why not?  Why God?

 He said, “Terry, I didn’t give them grace for nine. They can’t understand your grace.” Wow, it is His grace. Yes it is hard, but without His grace, I would not be able to live. That is just all there is to it. I would not be here. Since I am, then I know that He is beside me in my coaster car. He is there when I crash. He will not leave me or forsake me, nor my kids. There is a victory for them and we are going to keep believing that we will get it.

 I don’t want to pity my kids. I want to empower them. Empower them to live victorious over FASD. Let’s walk that journey and see how that is done……..Thank you Lord for teaching us how to be victorious over this ride. Show us how to walk over those rough spots and not crash. That alone would be such a victory.  So many parents of FASD are burned out. There has to be an answer for victory over that. I guess for one more day, I will stay in my seat and see where this ride is going. So glad that God is in my seat with me. Thank you Lord.

http://www.parentingfasdkids.com

kidznlildogz@aol.com

Monkeys in Training

Raising kids with FASD is a road that is not fully paved yet. We parents who have discovered that our children have this disability/spectrum disorder, are the ones that are paving it. The library is not loaded with books that are titled “How to successfully raise your FASD kid”, “Surviving FASD”, “How to heal FASD”, etc.

There are a few out there that are sharing their experience and most of them are, or have traveled a pretty bumpy road without any key directions that work perfectly for each child, that is born with this. We are all Monkeys in training.

Every day we wake up with a plan to do our best for our kids and it seems that we are never fully prepared for the curve balls that we get tossed. It might be the same behavior over and over, but do we ever just get used to it?  Can we just say calmly, “Oh well, he just snuck out his window again, no problem, he will be home eventually”. “Oh ok, he is high on dope, no biggie, he will learn soon.”  “Oh my, he got caught by the police again. I guess if he goes to jail he will finally get it.”

 NOT!!!!!!!! NOT!!!!!!!!!!NOT!!!!!!!!!!!!!  That is NOT ME!! I guess this monkey needs a whole lot more training.  I am not calm when my son does these things. Well I am not throwing a fit, crying, or yelling, but it tears me up on the inside. WHY?????  Why can’t I just get calm about constant crisis’? Why can’t it just be that simple? It sure would be a whole lot easier on my health and the emotional status of MY LIFE!

 These kids are totally unpredictable though.  We may get a few days of peace, but that corner isn’t far away often and sometimes it takes us quite by surprise.  Like the night I got woke up at 4 am by a woman who informed me that my son was going to be arrested for breaking and entering and statutory rape!  Yes that was some surprise!!! Us Monkeys just are not built for this type of constant stress.  I do know without the Lord, I honestly would crumble.

I pray. I pray for creative answers about how to deal with my children that are not in any books. Sometimes I get things that work and I share them with my friends. I can honestly say that we are somewhere that we weren’t before. We have learned. We have grown. Well the Monkey Mommy has, but the children, are a bit slower I am afraid.

 I do notice that Desi is growing a bit faster then Jon. She is getting it. She is less affected and I have many hopes that she will be able to be a success in her life.

With Jon, he seems stuck way back there in fifth grade, or some where in that area of life. It is still like that movie “Fifty First Dates” with Jon. We still have to repeat the same lessons daily and even when we repeat it, do we have any hope that it is going to stay there? Not usually and that is what makes this whole thing much like trying to shovel snow while it is still snowing out. It just keeps coming back. The work seems like a merry go round, but it must be done. You can’t leave it undone. We must keep trying.

  Lord please train this Monkey to learn not to react to everything that my children do. Help me feel that the world won’t crumble when they do crazy things? Help me turn off my adrenalin faucet when I see my son’s bed empty and the window open. Give me peace at night when I lay my head on my pillow, that no shocking phone calls will come in. Teach me to trust you fully and please once again, bring out your strongest and smartest angels to watch over my kids. I need them so bad. I am not strong enough yet and I am not smart enough yet.  This road is still being paved. The book is not yet written.  Thank you Lord.

http://www.parentingfasdkids.com My web site that is going to be used to make a difference.

kidznlildogz@aol.com

The little engine that could……..

Why is it that when I see the school phone number on caller ID, that I can feel a surge of adrenalin every time? I mean you would think by now that I would be fully used to a crisis on a regular basis. Right? Why not? Isn’t that what normal life is?  

I will say that is seems to be at my house. I remember when Jon was in middle school and at least twice a week the school would call. “Mrs. Quinn. This is the Mrs. *Principal* at Franklin Woods. Jon is here in the office with me. He is not hurt. He is fine, BUT…………………”

 Then  I would get the rest of the story and is would always mean he was in trouble for something. In those days, I did not know he had FASD. I was living each day just trying to figure out how to help my son and not feel BLAMED for his actions all the time. I did always take some comfort in the fact that he was adopted and surely someone would understand that I was doing my best.

 Fast track to Jon today, a senior, now in special ed with a laundry list of diagnosis’ in place. Everyone at the school knows it is NOT ME, but that Jon has brain damage from his birth mom drinking when he was in her tummy.

 So today the phone rings and it is that school number again. I swear I don’t own a gun, but if I did, it sure would be fun to just once shoot that phone when the school phone number comes up! lol 

  The phone was a recording. “A student in your household was not in attendance at Franklin Heights today”. WHAT? I ran down stairs to see if he was in bed. Nope.  Oh boy. I call the school back, and all the while, I can feel my blood rising up inside me.

 “OH hello Mrs. Quinn. The principal was about to call you…………” As soon as I heard that, I KNEW that I was in for it. I am really trying to learn not to allow things to blow me apart. I can’t handle the after math when it does.

  So I wait. They get him on the phone. I learn that Jon has been caught with a group of kids, before school, just off school grounds and they were all about to GET HIGH!!!!!!!  UM, Ok……….I am not in complete shock here. I knew that Jon had played with this drug before. I have caught him myself. However it has been our policy in the Quinn home that if a teen wants to do drugs, that they hit the road and do it outside my house.

 The problem here is that Jon is very mentally disabled  and  cannot take care of himself out there.

I am requested to pick Jon up at school and take him off school grounds. He has been suspended for nine days. A policeman caught these kids, but the school was able to deal with it so none of them went to jail. Wow, I must be getting use to these close calls with Jail.   Or I should be.

 Now my son has racked up three get out of jail free cards. Does he even realize that this kind of grace does not happen forever? No, my son can’t because he does not EVEN UNDERSTAND the danger.

 Isn’t that scary? He is unable to play football and my heart is broken over that. We worked so hard to get him on the team this year. I do think that is the one thing that has made just a tiny impact on him about this. Can I even imagine for a minute that it might stay up in his brain and remind him next time, just like the hot stove that one got burned on once, might be there to remind one that doing that again might burn you??

 I don’t know yet, probably won’t know for a while, but it didn’t stop him from pulling something else just this afternoon. I told him that he was not playing football today and since I saw him washing his football clothes, he needed to know that so that he would not go to the field.

 One hour later I get a text from his coach. “I just sent Jon home. He is not allowed to ride on the bus tonight for the game. He is not kicked off football though.”

 WHAT?????????? My son just took off to play a game without asking me when just this morning he was GROUNDED, PHONE WAS SHUT OFF and he was FINED FOR THE DOPE? (fining is our way of trying to teach reality as jails do fine people).

 So I go jump in the car and dash out looking for him. He is nowhere to be found. I come home and there he comes around the corner. A picture ot total defeat. “Jon, why did you take off?”

 “I had to talk to the coach”. 

“But Jon, you are grounded and I told you that you could not play football.”

“I just need to ask the coach how long  I am not going to play.”

“Jon you could have called him.”

“I didn’t think of that.”

BUT he did think about leaving when he was grounded. OH WAIT, he already forgot he was grounded? Good chance. Jon forgets everything. Jon’s brain is a blank slate often. Those little neurons that are suppose to fire across his brain, can’t find their way through the maze of holes that are shot in his brain from alcohol. :*(

  That would have been enough today, but as life goes, it wasn’t all. Desi texted me all excited that she got her lip pierced by a friend at school. WHAT???  A KID WITH A NEEDLE STUCK IT IN MY DAUGHTER’S MOUTH? Not a professional?  Not to forget also that I don’t want my daughter pierced in her lip? Obviously she didn’t remember that, as she was so excited to tell me.

 I told her that if she took out the ring, there would not be punishment, but it did add to my streak of adrenalin shots for the day.

So now I am like that little Thomas the train, I think I can, I think I can, I think I can………..just keep on going and not let this day take me down…

Just another day with FASD. It is not my friend. It never will be. You don’t make friends with the perpetrator of your children. You just have to deal with it. 

  Please Lord, protect my two FASD children from themselves. They are helpless Lord. THey need angels with them at all moments. Also God, those need to be the smartest angels you have, because they need to make up for the things that are missing in my kids brains that they had no choice about. Thank you Lord for another day of Grace. Thank you that my son is home tonight and not in jail. 

kidznlildogz@aol.com

Entering the Promised Land

 Matthew is off to college now and I can see such a maturity growing in him. He wants to be on the deans list and he is working so hard to do that. Little sleep and lots of hard work are teaching him that life as an adult is difficult, but worth it. He is making a way for himself and we are all so proud of how he is doing.

  I have to step back some days and just “admire” my children. They each have done so well. It feels great to launch them off into adult hood in a healthy way. 

Megan is my inspiration. She is our oldest and she is in a happy marriage with her bachelors degree in music. She lives life to the fullest and is so strong. She is raising our little grandson, Joshua who is such a treat.  If I had only had Megan and Jacob, what I would never have known about life? We did almost stop having children at two. One for me and one for you………..But God had other plans.

  Jacob is our oldest son and he is now disabled, but he is an awesome son. He is a gentle giant of a guy. He lives with us and he has been such a blessing to have here since he has taken over much of what I was responsible for. I am able now to concentrate on my two youngest children and work on getting well from fibro myalgia.

 Nate is our entrepreneur. He is planning to be a millionaire one day and bless mom and dad. Well that would be awesome, but first I would like to see him get a car, lol.  He is the most positive person on the planet though. Nothing daunts him. He just gets back up. That type of faith can take him far.

 Anna is so happy in her new marriage to Tommy who is such a great guy. We got two great son in laws. Dan who is Megan’s husband is also just what a parent would order for their daughter.Anna has such a strength about her now. She has matured alot. It has been much like watching a flower blossom out into beauty.

Briana is a hard worker and a great mommy to Jayden. He is our first grandson. Gotta love those grand babies. Bri is another one who never complains about life. She is about the sweetest thing on the planet and everyone just loves her. She turns 21 tomorrow.

Caleb has that golden touch. He is the type that can trade a paperclip for a house. He just keeps moving up in life and it seems nothing he does goes wrong. He started out in a fast food restaurant and made it to manager and every year he has improved his job and pay status to now he is writing software. His girlfriend, Kayla is in college to be a doctor. They are going to do very well. It has been so much  fun watching Caleb grow up. Life with him has never been dull or boring. He always has a joke and he keeps you on your toes.

I just wrote about Matt at the top and what an awesome kid he is. He has the whole world in love with him. lol That dimpled smile is what I think does it Or maybe his way of using his last two initials on facebook, IQ. He calls himself that to the world and it is a cute joke. He is so deep in his thinking that it fits too. His middle name is Isaiah and last Quinn, so you can see it was just part of God’s plan to give him that IQ. lol

 Next is Jon. Jon didn’t plan to have a disability. He has always wanted to be treated just like everyone else. There has been some grief that we have all shared to realize that Jon is not able to go on to college and move up in life the way his sibblings have. Often he has had the attitude that since he is not going to college, he is a nobody.

  Well NO ONE is a NOBODY. Everyone is put on this planet for some reason. Not all of my kids have gone to college and it doesn’t always drive a persons success when you do.

 Jon is becoming much more accepting of his limitations, even though I never limit my kids. The sky is the limit and God can do anything. It is nice to see him becoming more at peace with allowing us to help him though.

  Desi is our youngest and she is a senior this year. She does want to go to college, but we are trying to help her do it in a manner that she won’t get overwhelmed. So we think doing a two year college in four years would be better.  Having FASD affects everyone different. She gets stressed really easily and when she does, she can be prone to melt downs.

  Yes I can look over all my kids and find so much beauty and joy. Each is walking their own path and through the Lord, they are on a path of joy and success.

  We can’t look at anything as a negative in life. God can use it all as a positive.

Nothing worth fighting for is going to be easy, but every one of my kids are a blessing and have all been worth fighting for.

The battle is still on too. I am there with each of them as they walk through life and learn lessons that I once had to learn. I like to think that my ability to share with them how it was for me and the wisdom that God has given to me, spares them some of the pain and agony of the trials.

 I have heard it said that sometimes we keep going around a mountain until we get the victory. When we finally give up, then God can work and make our situation a blessing and success. I am always hoping that what I share with my kids will keep them out of that wilderness and into the promised land, faster then it took me.

 I have a dream and a vision for my future too. I am believing God for a farm and some land. I want a second home on that land for my disabled kids to live in. That way I can monitor medications and what is going on for them in their lives, but allow them some independence to have their own place.

 I want my own home too. 31 years of raising kids and I would love to have a kitchen back. One that isn’t constantly full of dirty dishes and left out items. One that allows me to do some cooking for wholistic eating and enjoy the process. Every woman loves her kitchen, but I haven’t felt that my kitchen has been mine for many years now.

 I believe God is going to make that happen for all of us.

I want to raise our own beef cattle on that farm. I love gardening and I adore our chickens. If I have a farm, more chickens can join them. We can keep a rooster. My daughters want horses. They can live on our farm and I will get to enjoy them.

 God has given me the desires of my heart all my life. He has always blessed me over and above what I could dare ask or think. I know that this farm and second home for the kids will happen. I have declared it and now I wait on God to bring it forth. He will. You all will rejoice with us when it happens. It is the promised land. The land right before Heaven. Heaven will certainly be a glorious place, but God gave us this beautiful earth to enjoy and I love it. I can’t wait for my beautiful land with trees, woods and places for animals to roam. Our promised land will be a land where quiet can take place. Praise God for it. Praise God for my children. I love them all so much.

kidznlildogz@aol.com

Mother burn out? They shall run and not be weary…….Walk and not faint……

I know you are all dealing. It seems a day doesn’t go by without some sort of crazyness. Jon was kicked out of a class today for good. They are just taking it out of his schedule. He is too disruptive to that class and it is an elective. He doesn’t need that credit to graduate. Sad, that I had to tell him that he got booted out because he disrupts the classroom and he tells me he did nothing wrong. He doesn’t notice what he does.
My bike is missing, we think he got it stolen in the night. He says he didn’t have anything to do with it. Well our garage is always locked. The one time it was open for a bit, someone climbed over the piles, past two other bikes and took it off the ceiling where it was hanging and then made out with it from our garage. All this and the dogs didn’t bark?  I don’t think so, but  I will have to wait until Heaven to know the truth.

 Last night Jon told me he wanted to get his tatoo touched up. He said it would not cost anything. Why wasn’t my brain clued in to what was really happening? Briana and Ryan spent their gas to come pick him up for a free tatoo? No. He came home with a new tatoo and now he owes Ryan 30 dollars. I had specifically told Bri that he could not get anything that he was going to owe for. She assured me that he wasn’t.  He did it quite deceptively. Got what he wanted after manipulating the situation to make me believe that he was not getting one. So now he doesn’t get any money for his allowance because since I told him not to do this, I won’t allow him to pay Ryan. Ryan knew that he wasn’t supposed to do this.

Sadly, he is using Jon for money. Jon will gladly be used too. That is how he is. He does not notice when people are taking advantage of him. I have seen it often. He will just give his money to people and trust everyone.

 Desi is having her fits. You can’t ever tell her that dirty little word “NO”. 

Last week Desi had a fit when she could not see her boyfriend after coming home from work sick. She went nuts and screamed THREE times at the top of her lungs. I was wondering which neighbor would call the police first, when they thought someone was being abused in our house. I stood there calmly watching her just bellow out these screams. You don’t say no to Desi. It is her way, or a tantrum.

Tonight she informed me that she requested not to work on Friday or Saturdays at her FAST FOOD JOB. Hmmmm I am thinking that she probably won’t be working much then as those are the nights when teenagers are needed. But you know “I don’t understand her” and I am “not fair” when I tell her that she can only work two school nights as it will stress her out for school.

So after she gets done with her crazy yelling at me etc. I am tired. It has been a long week, month, year, life, and I tell her go ahead and work all she wants on school nights, but you plan to move out when you turn 18 as I am done with your little tantrums when someone tells you no. 

It is just me. 31 years of raising kids. Nine of them*children*. These last two have FASD. I think I will move next summer and not give a forwarding address. 🙂
Just “sayin”…………………

Parent burn out in parents raising FASD kids is really high. I just read an article today about a family who adopted a child from Russia. He had FASD and he died after banging his head on a stove. He had a habit of head banging. Now the parents are charged with manslaughter, lost their daughter, their home, their jobs. They lost all because a child had brain damage from alcohol in utero. They lost it all because they wanted to do right trying to help a child. It made me sad.

 I know of other families who have been highly persecuted for fostering and adopting when these children are angry and turn on them. They call them abusers to get even.

  I know mom’s who have tried everything with their FASD kids and still don’t have the answers.

Whether you are a birth mom of a child with FASD or an adoptive mom, you are in a battle that isn’t going to go away. Brain damage doesn’t get better unless God makes a miracle. We never stop believing for those miracles, but every day we need to be prepared for the battle.

 Sometimes though, we get weary. Sometimes I think we just need some TLC ourselves, but there isn’t anyone to give it.

They say ” this too shall pass”, but with these kids, it seems ” this too shall stay”………………….

They that wait upon the Lord shall renew their strength. They shall run and not be weary, they shall walk and not faint. Isaiah 30:41

I am waiting God.  I am waiting on you.  I need to run and not be weary. To walk and not faint. To be able to deal daily and not get burn out. To have peace in the midst of all storms…………to just rest…………Thank you.

kidznlildogz@aol.com