A Life of Contridictions

It's funny how I go on about what happens and explain what Jackson can not do only to find myself eating my words only a week or so later! I enjoy being able to eat my words when talking about Jackson because I know he's growing and surpassing milestones I was not ready for him to achieve. My last post I spoke about how potty training was not going to well and that he had regressed. Well of course not a week later it all picked back up again. He even took it a step further and went to the bathroom #1 and #2 all by himself, while the babysitter was at the house. This may not sound like a big deal, but when I am not home Jackson does not go #2...he waits for me (I feel so special!), he also does not tell the sitter when he has to go....but this last week was different! Accidents were a rarity! We went from 2-3 accidents a day to maybe 2 a week, I am so proud!!

Now we are approaching school, it's tomorrow. The beginning of school has never been easy. I'm not sad to see him go, because I know he loves his class! My concern is that he does not feel stressed because it does affect his bowl control which we have seen the past 2 years. My hope is that this year he will feel more comfortable in his surroundings and that everything will remain constant. His after school program will change and he will be staying at school until I can pick him up. I hope that this is a good thing, that he will stay where he is supposed to without running off and that the care takers will be excited to see him rather than worry or fearful that he exists in their program. This is something that I always fear. So many people do not know how or don't care to know how to care for him. It's not hard, it is no different than any other child with the exception that he can not vocalize all of his needs which manifest itself as doing before processing what should be done. We are in a predicament after school simply because since we are paying for child care, the provider can refuse to take him, they are not bound to keep him....so I spend a year holding my breath in hopes that he will do as requested and they will continue to welcome him!

I never thought this would be me. I never thought I would have to fight day in and day out for my son to be recognized in a society that I see still greatly discriminates and segregates. I never thought my child would be one that people could not love unconditionally and want to know and be apart of his life...but this is the life that I lead, this is the fight I take up every day! It is an exhausting battle, but as long as I see that he is thriving and learning, then I will continue my fight without compromise!

It's never easy!

Sometimes I wonder if it is really worth the routine...the continual routine that happens day in and day out and never changes for fear of something becoming unbalanced? Had it been with any of the other kids I would say I need to relax a little, let somethings go, get out more and try new experiences! I would have rolled my eyes, called myself a stick in the mud...til I had Jack!
It amazes me how much unchanging routine is so important to the balance of his life. He has a set routine for night time that only he allows me to do with him. He has certain rituals that must be completed in the morning like having his milk (his coffee) before he will hug anyone at school. For church he must sing songs in big church before going to his class, which also includes donuts and water. If any of this changes format it is grounds for mental meltdowns depending on the day. Some days he is okay with the small changes, others it's fall to the floor refusal of cooperation
For the most part my kids are easy going, but like to know how long they'll be gone so they can get their important things to snuggle with. Jackson is always on the go...he always wants to go somewhere and asks "uanna go?" over and over again and sometimes with shoes in hand. Though he has grand aspirations of going everywhere, he can't afford it...and quite honestly it wears me out!
So this summer (actually a couple of weeks before summer started) we began potty training. This was all Jackson's idea (you can ask his teacher!) which began by stealing a little boys underwear from the bathroom and requesting that he have them on. (I know, I was rolling when his teacher called me!) So I was okay about this. After 4 kids I knew this was something not to be rushed and with Jackson I never know what to expect, but I was ready. He did great! He stayed dry minus going #2, but I was happy with that and figured 1 step at a time. Then he began to stay dry overnight, which really floored me because all the other kids took a couple of years to be dry all night, but my little man decided all at once to stay dry during the day and at night...we just needed to find out how to catch him before #2! By the first part of July I figured out the routine enough to catch him and it was going great! We had been accident free for almost 3 weeks, then we went out of town.
Now typically when we go out of town I become more in-tuned to my children and can figure out their potty needs when they were potty training, with Jack it was not that easy. He was surrounded by nature (which is his favorite, most relaxing thing in the world) and I was sunk. It went downhill from there. I don't know if I was just exhausted from all the travel, surely our routine went back to normal when we got back??
So our great accident free status went from several days to several minutes or hours. It's like starting from square one...AGAIN!!
This is very disheartening for me...I don't consider it a setback, just a reoccurring learning process. He is still dry at night, and for the most part dry during the day...but that dreaded #2 will be the death of me. I was so hoping to share with his teach all the progress he's made over the summer and with all that time he would have solidified a routine that he could take with him to school and I could tell his teacher what to expect, but this will not happen this summer. He has made a lot of progress in his speech (I think) and in some degree with the loss of his first tooth has matured. But the dreaded training saga continues! The reason it disheartens me is because I so long for him to be independent, I strive for that with all my kids, it's very important to me that they are successful all on their own so they see what they are made of.
I know that this too shall pass and I know that this will be a small blimp on his screen of accomplishments and considering when he started he's come a long way in a short time. I get it, I completely understand that is will take time and probably a year from now I'll be laughing at all of this! But now I question whether or not it is worth going away on vacation, when should be attempted again, what changes are to be made? Will it be like this all the time or is it this particular concept that is more difficult to accomplish??? I don't know the answers to this and no one else can tell me either because each child is different...it's never easy, only different, more creative, more involved....just never easy!

Diet Restrictions???? Oh yes, I think so!!

Jackson has been a very healthy boy...he breastfed until he was 6 months (which is a small miracle), we were told by his Nutritionist that he needed to be on Soy milk because children with Down Syndrome can not digest the vitamins and such in cow's milk....so he drinks soy. Over the past couple of years we have gained more knowledge into the effects of food on his tummy. Now granted, he will eat EVERYTHING!! If you have seen him you'll know he doesn't miss a meal...not because he's fat, but because he's solid! Anyway, through trial and error we have found out a few things:

1. He can not eat any fruit that is acidic...so no oranges, no pineapple, no apples, no grapes
              - however, he can eat 1 individual portion of applesauce or 1 individual portion of mandarin oranges. He can also eat raisins and prefers yogurt covered! Never more than 1 a day (or else the side effects are not worth it!!) such side effects include days of loss bowel movements (most times uncontrollable)
2. He can not eat fruit snacks...because they do the same thing as #1!
3. He can not eat a lot of refined sugar or he becomes very hyper and aggressive...when he gets this way it is very difficult for him to settle down.
4. Everything in moderation! Chips, raisins, etc must be put in a bowl, so he understands that when it is done, that is all! (it doesn't stop him from asking for more, but does stop the mindless munching.
5. We also have to monitor the stress in his life such as starting school, new situations, etc and change his diet accordingly because it does affect his digestion.
6. He typically drinks soy milk or water and prefers water...however he also enjoys Root Beer and Sprite when we are out and about. No Capri Suns, or juice for the same reason as #1!!!!!

The boy will eat in constant! His favorite foods are Pizza, Corndogs, Pancakes, Yogurt covered raisins, and cheese balls...to name a few.

I say all of this so you understand his eating routine and to prepare you for the story I am about to tell. This evening we went to a party that was filled with all different types of sweets: Cakes, brownies, cookies, fruit, punch, etc. Not only was there a variety of food, but it was also at the perfect height for Jackson to reach easy. Since it was a special occasion I decided to let Jackson have his choice of a couple of dessert where he ate almost all of it, but also devoured a delicious sugar cookie from Kroger ( you know the one with icing on top that you just can't get enough of it's yummy goodness because it calls you to that calm....but I digress. So for the most part he did good (I think, but I wasn't watching all the time...oh yeah you know what's going to happen!) So the next thing I know he has fruit punch, not a problem, we can try it, a couple of sips won't hurt right???WRONG!
After about 20 minutes he had had enough, he'd gone to the bathroom, he washed his blue hands and face from the sugar cookie and all of the sudden a burst of energy began to take place. Now I'm sure that onlookers were in awe and wonder in his energy because he does command an audience. His brother was also available so I had to make a decision. I could hold on to him, get kicked begin to yell because he won't calm down making a scene or I could take him to a clear area in the room and let him run it out....so I told Zachary to take him and run him ragged! So he did just that, they ran around the tables, they ran around chairs (well mainly Jackson). Remember how I said Jackson becomes hyper and aggressive...well once the running was too much for Jack he then proceeded to take Zachary to the floor, when that was not very successful, Jackson then chose to fall on the floor himself and loving every minute of it. I figured as long as he wasn't hurting anyone, then better he get it out now, than to deal with it in confined spaces...well after about 30 minutes we chose to leave, his movement was getting to be too much and we needed to do other things. Once we got home, he got into the shower all riled up, luckily the shower settled him down a little, but it took another 45 minutes for him to completely calm down enough to watch a movie. After it was over he began on last segment and moved from couch, to chair, to chair and pretended to sleep...Little stinker!

He is a ball of energy without the extra sugar, therefore this is why we limit his intake of certain foods and beverages....In all of this I can safely say that bed time is never a problem! After getting ready, brushing teeth, and getting him Mickey Mouse and blankie, it takes him no time at all to fall asleep as I read him a book. He sleeps well (10+ hours) every night and is ready in the morning to take on the world!! Never a dull moment with this little man!

Breakthrough

When Jack was an infant his (Occupational Therapist) OT would tell me that children with Down's Syndrome have learning plateaus. All the sudden you'll see a ton happen in a short period of time, then they plateau and ya never know how long that will last. Well for me (being who I am) I don't like the word plateau because in my opinion it means nothing is happening...In the stock market if a company plateaus they are just doing their best to survive. For Jackson he doesn't plateau (in that sense) I call it observation mode. I don't ever know how long his observation mode will last, sometimes it's a couple of weeks, sometimes 6 months or even longer. Needless to say it's a patience builder!! My expectations for his achievements have not changed, I just know that they will be in his time as he sees fit all I can do is wait and marvel in celebration once he accomplishes something (anything).

With that said I will share what happened yesterday. Last night as we were preparing for bed Jack asked for his hair to be cut. The words were a little garbled so it was not completely clear, but wasn't sure if he said what I thought he said. However, once I looked at his hands, I realized that he wanted his hair cut. HE WANTED his hair cut!! You have no idea how big this is!!! Since Jackson was about 6 months old I have been cutting his hair, well more like buzzing his hair. He's a high and tight kinda kid, I find that it doesn't exasperate his features as much, plus he's very warm natured and he would be dripping in sweat if his hair were long (more than an inch). EVERY time we cut his hair it was utterly draining! Once he was able to sit in his bumbo chair (around 15 months old) he would scream bloody murder, cover his head with his arms, and wiggle around. This haircut would last anywhere from 30 to 45 minutes that should only take at most 10 minutes. I would dread cutting his hair trying to hold his arms and use the clippers. Not to mention trying to get close around his ears. I always got it done, but knew it would be only too soon before I would have to cut it again.

As Jackson has aged it has not gotten much easier. Though now he sits on a bar stool and can watch tv, the mere vibration on his head just sends him through the roof. His hypersensitivity issues go into full effect and he is crying and screaming, holding his ears, telling me he's done and almost to the point of hyper-ventilation. I try to cut his hair about every couple of months (maybe 4-6 weeks). The first haircut of this summer was not so bad, the crying and screaming had subsided, but the arms were still causing trouble along with the constant  "done momma" after every blade change. I was hoping to go another couple of weeks (right before school started) to cut his hair, but last night after playing around with his siblings Jack wanted his hair cut...maybe because he was tired of sweating??? I have no idea what spurred it on. Since it was late, I told him we would cut his hair tomorrow....after a battle of  Jack:"haircut", Me "no, tomorrow," I finally won. So this morning I asked if he still wanted his haircut and he said yes. I had no expectations in this venture. I assumed he would do the same old thing even though he wanted it. So I moved the barstool close to the TV so he could watch while I cut. I put the cape around him so the hair would not get all over him (another thing that sends him into a tail spin), and began to cut. Though around the ears was a little difficult, we managed to finish his hair in under 10 minutes, no tears, no screaming (by either party). He then preceeded to show Zachary his haircut and wanted to show his papa but he was at work. He took a shower (which is one of his favorite things to do)....and all is well in Jackson's world!!

Amazing breakthrough! Now it may not have been amazing for any other typical kid, but when you go through several years of struggling and all of the sudden the struggle is gone you can't help but celebrate!! Not only did he want his hair cut, he was able to express through WORDS and hand signals what he wanted! I'm so proud of my little man and so thankful for him. It is through him I am able to appreciate the little moments that I would not have been queued to see if it were not for him.

We have definitely been in observation mode the past 6 years with this particular event. He's watched both brother and father get their hair cut and watched how they acted and what they did and finally decided he could do that too!

In a nut shell

To bring all that has been said to the blog, I will merely paste what began this journey into the looking glass!

Did u know that children with DS are strong-willed?you'd know if you've met jack. One way to combat that and hone his craft is to have strong-willed parents who will fight back with him and fight for him...a strong-willed teacher is also a necessity to have because he knows what buttons to push and has no prob pushing them!

Jackson can...unload the dishwasher (assisted), put away groceries, put laundry in and out of the washing machine and dryer, cooks and bakes with mom, tidies up toys in his room and can set the table....all requiring dexterity. Still working on the bi-lateral movement and stability to enable him to make the bed...his glasses should help too! 

Jackson's favorite part...aside from baking is putting away silverware...taking out the silverware from the dishwasher and separating each one according to what they are. It not only show him structure but allows him to learn his eating utensils.

Dexterity is something that Jackson has not mastered yet. He can not dress himself fully without help, he often doesn't realize what his hands or body is doing and does not have motor memory sequences yet. All this must be achieved before he can fold laundry, make a bed, put on socks, etc. Amazing all the little things... is takes to make a movement that seems so simple!

Did you know that in order to do household chores, dress yourself, eat, drink, and other activities you must have 3 basics: Stability of body and arms, Bi-lateral coordination (hands work together), and sensation (sensory awareness or body and hand position, motor memory of sequences)...which is the building block for dexterity!

Did you know that using an easel can help with pre-writing skills? It helps develop hand-eye coordination, muscle tone, and stabilizes shoulders.

Did you know that children with DS have low muscle tone?

Children with DS have a slowed nervous system, so sensory development in the hands will also be slower. This also means that it will take time for Jack to process how heavy something is or the force in which they grab it.

"God knows more about what you need than you know of what you don't want. Look beyond the pain to see the promise."

Over the past week I have given you some glimpses into our world with Jack...Here is more you don't know: His reading comprehension is of his age level. Please know he can not read, doesn't know the alphabet or numbers, but if a book is read to him he can point with pictures to assist what happened in the book! (more to follow)

According to jacks testing, his math reasoning is that of a 2yo 8th month

Actually the majority of his skills are between a 2-3yo... This includes but not limited to needing to have assistance drawing a circle, cutting paper, getting dressed.

So I have 2yo in a 6yo body...granted he can do many things, but to put an age to it that's where we are!

Today Jackson's animals have to go potty

It's funny because he says it and I think it's him...he is quick to tell me "no dis one" and holds up whichever animal he is conversing with. This is new!!

Today Jackson has started playing with stuffed animals he's had on his bed for years!! All the sudden he's spatially aware and found something bigger than his small block people.

Ah another new phrase uttered by jack "ur mean Anna!" or "ur mean to me Anna!"

Good food for Jack is followed by "mungy, mungy, mungy" (or yummy, yummy, yummy)

 

Confucius says “Real knowledge is to know the extent of one's ignorance.”

“The little I know I owe to my ignorance.” Sasha Guitry

Sometimes you can only sit back and admire the thought processes of a special needs child!

Jackson will continually ask for something he wants until he is satisfied with the result. This is no different from anyone else except he may not understand the reasons as to why it is not exactly what he asked for and typically comes with a meltdown while I am frantically looking for something to distract him.

Though Jackson is 6 he has not mastered the form of playing with people...he'll play next too, but will not connect with someone. However, if I play the voice of his Mickey Mouse or other play figure, he will play that way.

Last night I listened to Jackson playing with his Shrek and construction worker. Shrek was constantly belching and the construction working kept saying Shrek's name. I enjoy listening to the conversations he has with his people...it allows me to see what he hears.

Jackson's new phrase is "weve me alone" (leave me alone)...now I just wish I could deprogram the phrase "shut-up" he uses frequently either as something to say or because he wants you to do it.

Did u know that I make my bed 15-20 times a day because jack loves to snuggle in it and watch tv? Though I've tried to keep him above covers he insist on going inside, must be the way they feel against his skin...could b the pressure that he needs to help him be still??? I do not know.

Is getting ready to watch Ah force (according to Jack) with his right hand raised high with a fist....which is "G-Force".

If I need Jackson to do something and he does not comply directly (or within a few seconds because response time is a little slower) then you'll hear me cound DOWN from 3 to 1. After 1 you'll see me pause and begin to raise my hand, you'll also begin to see Jackson comply because he knows the cause and effect of his behavior...he's seen the effect.

Did you know that when Jackson hits or kisses or slaps, it may feel hard to you, but it's like a feather touching him. Sensory learning is necessary for him. He needs to know that it was hard, he must also know the correct way to touch. So if he is doing something too hard, let him know and show him how it should be done, then let him try and praise him immensely for how he did! It makes a difference!!

Jackson is currently learning how to use a GameBoy to play Strawberry Shortcake...Doing well, but asking for help

Did you know that for the most part Jackson will try to do EVERYTHING on his own...it may not be fast, it may not be perfect, but it is done BY HIM. If he can't do it, he'll sign and say I got it. Show him once and he'll want to do it himself...he's very independent, you just have to lose the idea of perfection and fast!!

Jackson's new word: game and it is clear!

Did you know that if you want Jackson to do something it has to be direct without fluff? He doesn't understand and gets lost in the extra wording that many of us feel is necessary.

Did you know that by merely making picture charts (similar to a to-do list) that he can mark off helps with his meltdowns? Did you know that by cupping your hands on the sides of his eyes like blinders on a horse and speaking to him so he only sees your eyes and face he will comply, but it will not be instant like most "typical" kids.

Did you know it takes several months for Jackson to commit something into routine? Did you know that any variation of this routine could begin a talespin of meltdowns causing hitting, yelling, laying listless on the floor, defiance and many other type of episodes that he doesn't know how to control?

Jackson does not like car washes nor does he like driving in the rain...hes yellin at the rain now!

Jackson is still trying to understand the automatic towel dispenser and the fact he doesn't have to continue to tear every time something comes out.

today the word of the day is awesome this is brought to u by jack who thinks everything is awesome!

Life
shrinks or expands in proportion to one's courage. - Anais Nin

we've been working with jack on keeping his glasses on and have found sensitivity issues, luckily one pair are light enough to distract him, the other pair I'm still working on, however the band around his neck was pointless!

Realized how much i loved holding my children when they were infants but do not like holding others because of the memories from my last...ground breaking! then laughed at the idea that they remind me of Perry the platypus, they don't do much!

did u know that jack only eats with a spoon because of the dexterity it takes to use a fork? do u know how much muscle, dexterity, and thought it takes to use a fork?

have u ever crossed paths with a child of special needs and caught yourself smiling because of how they made u feel or what they did to take your mind off life? have u ever wondered if u have the same effect on others??

have u ever watched a child with special needs during a worship service and feel as though they have a greater connection with god? have u ever asked why they were uninhibited?

did u know that most special needs children do not learn their abc's or how to read the same way other children do?

the best thing about parents with special needs children is their outlook on life, have u ever asked them their perspective or are u not willing to step out of ur box?

parents with children who have disabilities are mentally and physically worn out 24/7 and still try to maintain a life...how will u help them to refresh, regroup, and feel a part of something? or r u willing to accept ignorance is bliss statement and sleep well?

u can not know if u do not ask...u can not b better if u don't strive to change...u can not have compassion if your heart is closed an unwilling for life change and honesty.

when someone has cancer, you find everything out about it, to understand what a person is going through, yet a person has a special needs child and the situation is like a plague instead of an educational process i don't get....do we not deserve the same compassion as those with cancer???

 

Beginning something new

It was brought to my attention that I needed to create a blog of my Facebook postings so my experiences would be shared with those outside my "friends" circle. So with that I have created this blog. The necessity of my writings came after an eye-opening trip that showed how little people really knew Jack. When I asked what they wanted to know they couldn't tell me yet didn't know where to find the information. This opened the idea that maybe I need to begin to share Jackson's daily life, stories, adventures, building blocks to anyone who would read my post instead of waiting for people to ask. I guess most people are afraid they will stay something that will hurt me or anger me when in fact them not asking does exactly that. I guess this is similar to those who grieve for a person who has recently passed away or even those who are battling cancer? I say that with extreme ignorance because I have never been through either of those situations. But I digress.

From now on, my updates of Jack will be available here for the world to view. Please keep in mind that these postings come from the heart, which will therefore be exposed. Somethings may not sit well with everyone and there will be ups and downs in these postings as I will hold nothing back...holding back has not helped me this far so it's time to unleash. I can only hope you will take to heart what has been said, search within yourself as to how it applies in your setting, and consider it a learning process for us all!


At most this will be a place for me to see growth. Growth in the struggles we grow through, strength and endurance in the harshest of times, as well as awe and wonder to the awesomeness of God and his unwavering hand through all of this. So enjoy these postings and hopefully my voice will be the education of many and the gateway to the opening of so many doors!