Parenting in the trenches

Parenting a child with special needs is both a joyous blessing and a at times a heartbreaking task.  Yes, all parents experience these highs and lows but for some the highs and lows hit just a little harder.

What do I mean?  Let’s go back to the birth (assuming your child’s diagnosis didn’t come until after their birth), while the other new moms were rejoicing over their precious bundles (and receiving congratulations as well), the mom of a child with special needs often hears, “Oh, I’m so sorry.”  The air around them often develops almost a funeral like atmosphere.  The hospital staff is often more subdued than anything.  People tend to tip-toe around the new mom (and dad) not quite sure what to say.  As a mom of a child with specials needs, let me say, that congratulations on the birth of a new child is always in order (and so much more appropriate than the “Oh, I’m so sorry” comments).

Let’s assume you’ve gotten through those first few months and are trying to just enjoy being a mom to your newborn.  Unlike the other moms whose children didn’t come with a “diagnosis of doom and gloom,”  (yep, so much of the information parents of children with special needs receive is of the “doom and gloom” variety), you’re busy trekking off to the multitude of doctors appointments your newborn has scheduled.  This makes it difficult (but not impossible) to see the child for the diagnosis.  After all, if your days consists of getting to one doctor’s appointment after another when do you get to just sit and admire that new bundle of joy?

After a short time, you may start getting assistance from the Birth to Three (or Intervention Program by another name) where well-meaning professionals come to help you with your child.  The questions they ask just serve to remind you that your precious baby isn’t quite like the other babies out there and needs more help.  The focus is often on what the child can’t do and what they can do to help you help your child get to where they need to be (which may or may not happen).

At this point, you have probably come to see your precious bundle as yours and that he/she is unique in his/her own way and you love that little bundle and wouldn’t trade for another.  You start living and only occasionally think about the diagnosis — like when something goes wrong or when your girlfriend whose baby is the same age as yours reaches a milestone that your precious little bundle hasn’t reached and isn’t showing any signs of reaching in the next few weeks.

Gradually, the years past and you are now a mother (parent) of a pre-schooler but your precious pre-schooler isn’t walking or potty-trained or fill-in-the-blank, well you get the picture.  The funny thing is by this time you’re more of a veteran mom of a child with special needs so you don’t focus so much on what junior can’t do but on what he can do.  Then when you are just tickled pink because Junior took two steps without holding on to anything, your girlfriend mentions that her little one has started riding his trike all over the yard.  Yes, you’re happy for her but for a second that little voice in your head says, “What about Junior?  Why does she always rub this stuff in my face.”  Word to the wise, she isn’t intentionally rubbing it in your face, she just forgets that Junior isn’t as developmentally advance as her little one is and she is excited about her child’s progress.

What’s interesting is as the years progress, at least in my experience, the diagnosis becomes less important in the grand scheme of things and most of the time you tend to forget about it until something slams reality back down on your head.  It’s those times that the heartbreak can be excruciating.  It’s those times you wonder how you made it this far and you forget all that you and your precious bundle have accomplished.  For those of you just starting out, I would highly recommend that you take the time to document your child’s successes.  That way when reality strikes (and we all know it will) you can pull out your memory book(s) and say, “this too shall pass and when we reach the other side we will be victorious once again.”

Another bit of advice, if you know your child has a low immune system don’t be afraid to tell sick people to stay away.  Your child’s health is more important than that play-date.

My son with special needs is now 17 and our life hasn’t always gone the way I hoped and prayed it would, but I know it has proceeded in a way that it needed to proceed to fulfill God’s plan for the two of us.  To be honest, all three of my boys had a rocky start in life.  Mitchell spent 3.5 weeks in the NICU after being life-flighted to get there.  Zachary turned blue in the newborn nursery (yes, antiquated practices of a newborn nursery at the hospital) and came home with an apnea monitor which I do believe weighed more than he did and we lugged that thing around for 6 months.  So I know that even a child with the right amount of chromosomes sometimes becomes a special needs child if only for a little while.

My days that reality slaps me in the face have ebbed and flowed over the years.  Right now, I feel like I’m in the midst of one big reality wake-up call as my hopes and dreams for Nick aren’t exactly lining up with reality.  It’s hard too when the 9 year old seems more mature (at times) than the 17 year old.  (The 11 year old some days seems older than me.)

Hopefully, this post hasn’t made some expectant mom panic (especially if she has already gotten a doom and gloom prenatal diagnosis) because truthfully the good has outweighed the bad and I’m confident it will continue to do so.

 

Apologies on no new posts…

Last week on Tuesday my mom called and told me my grandmother had had a stroke on Monday night.  By Thursday, things weren’t looking good.  Turns out she had an allergic reaction to a new med and by Friday we thought she was improving.  Unfortunately, when we returned to visit her on Saturday we discovered she was having trouble breathing.  Sunday she was no better and I feared she was growing worse.  All the nursing staff would say is “well, she is 99 and her body is tired.”  People we are her family, we know how old she is and we know how tired she is — you aren’t telling us anything we didn’t already know.  My husband is a nurse so on our way back home I was talking to him about what I saw on Sunday morning.  He confirmed my thoughts that Grandma was dying.  On Monday morning Mom called to tell us Grandma had passed away.

This week has found us getting Jeff a new job.  Praise the Lord that didn’t take long and the two weeks he was unemployed can be viewed as a vacation (he had 3 weeks of vacation from his previous job due him so those two weeks were with pay).  We are still waiting on his mom’s estate to finish going through the probate process, hopefully that will finish up this week.  Nick had OT and Speech (Monday/Tuesday, respectively) and the boys have had school all week.  Mitchell turned 11 on Wednesday and we celebrated with the meal of his choice (Kielbasa Dogs w/Sour Kraut) and a movie (Beverly Hills Chihuahua II — his birthday present from us).

We’ve managed to survive 3 days of homework with Zachary — trust me it’s survival.  The poor kid has two older siblings that almost never have homework and thinks the world has plotted against him because he almost always has homework.  I think he spends more time fighting doing it than he actually spends doing it!

As far as my coupon adventure goes, it was put on hold during the past two weeks — too many other things have required my attention.  I hope to get back at it next week.  Since Savings Angel didn’t have my local Shop-n-Save in their system, I’ve been manually trying to compare the theirs to mine.  It’s a lot of work, hence the setting it aside while I deal with life.

Plans for the rest of the week include working on repairing a scrapbook of my Grandma’s and cutting the boys’ hair — they are starting to look like shaggy dogs.

First adventure with couponing….

This evening the younger two boys and I ventured to our local Shop-n-Save (well, we actually went to the bigger one where a branch of our bank is located) and decided to try our hand at using coupons (money is tight until payday this week).   The first coupon the boys stumbled across in the newly created coupon binder was a coupon for a free Bird’s Eye SteamFresh veggie with the purchase of either a Van de Camp’s fish product or a Mrs. Paul’s fish product.  Dinner was decided on the spot — fish sticks, free veggies (ended up with Brussel Sprouts, yes the boys like them) and Kraft Mac-n-Cheese (the blue box) as we had that at home.   Since Jeff is a big eater I ended up doubling that purchase (unfortunately, only had one coupon so only one of the veggies were free).

Tomorrow night we are going to have Spaghetti, since  I have everything to make that at home we just needed a salad (no coupon) and bread (had a coupon for Texas Toast fifty-cents off and S-n-S doubles coupons up to $1 so we got a $1 off that!).

Then we noticed that S-n-S had Manwich on sale 3 for $3 and we had a coupon where if we bought 3 we got one free!  Score another freebie! Ended up with 4 cans for $1 and when Jeff asked Mitchell to tell him how much each can cost, Mitchell responded with, “less than $1” but Zachary piped up “$.75/each and under a $1 with tax!”  (No, Zachary isn’t a math whiz he just got lucky and even admitted that after we all teased Mitchell a little about Zachary beating him to the solution.)

All in all,we purchased $39.84 worth of items using $4.50 in coupons (including manufactured double ones), less another $1 for our rewards card bringing the grand total to $35.63 with tax!  Not bad for a first time and only using 4 coupons.

I’m 2 boxes of cereal away from a free gallon of milk (and I’ve got coupons for that cereal!).  I’m also $7.70 away from another $.20/off gallon gas coupon.  We recently earned a Big Game Coupon which saves us $10 on a $25 purchase — need to use that this week so we don’t lose it.

 

Savings Angel…

Well, I joined and I’ve perused the website and come up a little disappointed, not because I don’t believe you can save money because I do believe if you live in their home area you will save using the program.  Unfortunately, I live in WV and their home area seems to cover the following areas:  West Michigan, Eastern/Central Michigan, Illinois/Chicago, West Ohio, Minnesota, Missouri, Iowa, Arizona,  and Florida/Georgia.  They are still growing so there is always a change that WV will be added to their coverage area.  Until then my choice is to stick with them and use my grocery fliers and the coupon search feature to find my savings, utilize the national coverage store features (for the stores in our area) or quit.

I think I will attempt the first choice for a few weeks.  Seriously, the reason I jumped on this is I’m lazy when it comes to coupon use and truthfully while I’d love to save us a ton of money on groceries I seem to lack the willpower and gumption to actually do the work of locating coupons, tracking sales and matching them all up together to gain the biggest reward.

The times I’ve got segments of those coupon shows and the times I’ve read what online friends are saving (and getting for free or nearly free) I’m psyched.  I’m thinking I can do that, but then reality sets in and life happens and no coupons are clipped and no savings are found.  Perhaps I need to look at this as a game and get the boys involved.  They can cut coupons (they all love to cut stuff up), they can match sales ads to coupons (ooh, Nick could use the matching practice) — I could even make a deal with them — we put the money we save into my old pretzel container (big plastic jug) and the money can go towards a family trip.

I’ll let you know how it goes next week.  Got to tell them about this tomorrow.  This might just work after all.

A new adventure…

The other day I joined Savings Angel in an effort to help save on our groceries (and even to build up my pantry while not spending more).  Today I’m going to go through their training videos and try to learn exactly how I can save.  I’ll keep you posted on how I’m doing.

The only difficult part will be the budgeting scenario, as in how much is our current grocery budget and how much is our new one using Savings Angel as I’ll never come up with a budget for anything.  Groceries have been brought as needed (and prior to getting married and having kids) and after all bills were paid.  Since getting  married and having kids, Jeff insists on keeping a minimum amount in the bank (after bills are paid) to cover groceries — he says Oodles of Noodles does not make a well-balanced meal for growing boys.  I have to agree with that, but they are cheap.

 

Oh for a Cup filled with Goodness and Joy

This morning a read this post and talk about an ouch moment.  The author talks about how we (as mothers, but truthfully as humans) tend to make excuses for our bad behaviors.  For example, you yell at your child or spouse but tell yourself it isn’t your fault if they would only ___________ (fill in what you wish they would do) then I wouldn’t have to yell.

What really got me though was this comment:

Somehow we fall into this mythical belief that if God calls us to a task that it should be easy and that if it is not easy and is indeed difficult then it’s a not good plan or not the plan God has for us.

Why?  Well, 17 years ago I gave birth to Nick and joined the ranks of mothers who just happened to have a child with a disability.  In those 17 years I’ve lost count of the number of times I’ve heard that God chose me to be his mother so that makes me more than qualified.  I think the reason the comment hit so hard is I’ve often felt that if God assigned me this task why is it such a difficult task?  Shouldn’t it be easier?  Why call the unqualified (trust me that’s how I’ve felt on more than one occasion)?

The author of the post that triggered this one used several examples of how more often than not those God has called have faced hardships and trials and through perseverance and faith in God have emerged triumphant (either in this life or the next).

We have preachers today that preach the Good News and leave new believers coming away thinking that if they accept Christ and follow Him then life will become easier; however, if we really and truly study our Bible we learn that most of those early believers faced hardships and trials.  Are we any better that we should get easy street for accepting and following?  I think not.

All too often when my sons have done something wrong I don’t respond in a Christ-like manner.  My selfish-human nature rises up and lashes out.  After reading Kelly’s post I realize that is because my cup isn’t filled with Goodness and Joy but is still full of bitterness.

There are times I’d so love to be more like Nick.  He seems to have the natural inclinations to respond with love (most of the time).  I’ve seen the boy get a shot, screaming and crying and pushing the nurse away, but once it is over he is offering a hug and a smile.  (I’m not talking hours later but seconds later.)

A long time ago I heard that when you ask for patience you get trials and tribulations because only through those can one learn patience.  I finding now that once again the only way to truly become Christ-like is to go through trials and tribulations until you learn to respond in a Christ-like manner.  Trouble is, I’m still like the cartoon of the priest praying “God grant me patience, and I want it right now!”  I don’t want to go through trials and temptations; I’d rather go to bed and wake up Christ-like.  Unfortunately, that isn’t how it is done.  So, I guess I’ll pray that God will walk through these trials and temptations with me until I can come through them Christ-like.

Just some advice….

Folks when you see a child with a disability, try to see the child first and not the disability and while you are at it listen to what the parent or caregiver is saying to the child and try to see the heart behind it.  What am I getting at?  Well, it is my job as a parent to train my children to be productive members of society one day.  Some days that job is easier than others.  We all face those days when we think, “Lord, I’m not cut out to be this child’s parent.”   And, the “this child” probably changes from day to day, if not moment to moment if we have more than one child to raise.

Well, when you toss in a disability to the mix, this job gets even trickier because you aren’t just having to train/raise your child but you have to try to overcome society’s ideas of what your child can and can not do.  Unfortunately, society doesn’t seem to want to listen to the parent that knows the child the best.  Nope, society often tends to go with their prejudged viewpoints of what someone with ____________ disability can or can not do.  A new parent of a child with a disability is often overwhelmed with all the “your child won’t be able to do” statements.  Very few new parents of a child with a disability hear, “Congratulations your son (or daughter) will be your greatest joy and, at times, your greatest heartbreak.”  (Honestly, every parent quickly learns the truth of that statement whether or not their child has a disability.)

Hear me when I say this, I know you are trying to reassure me that my child isn’t a bother when you say, “It’s okay.” when he does something inappropriate.  And, yes, I understand that the toddler or preschooler doing this is cute and adorable, but what you don’t understand is I know my child and I know that if I allow this inappropriate (however cute at this age) behavior now, I’ll be fighting a long battle trying to stop it as he gets older (simply because he was allowed by others to get away with it so much longer than his typical peers would have been allowed).

When my son hugs you and I tell him, “No, we shake hands or high five.  Hugs are for family,” please don’t say, “Oh, it’s alright I love hugs.”  That sends him conflicting information and he thinks it’s okay. Trouble is — not everyone feels that way but if 9 out of 10 of you tell him it’s alright then he thinks everyone (but Mom and Dad) think it is alright and one day he hugs someone that doesn’t want hugged and is in big trouble.

So, you see when I correct my son in public I’m trying to train him to behave in a socially acceptable manner.  I’m doing it because I know he is capable of learning but I need your help — I need you to support me and not contradict me.  If you disagree with what I’m doing, try to get me alone and ask me why I’ve done what I’ve done — you might just learn something or I might learn something if you take the time to explain your thoughts.  We both can walk away with a better understanding if you just ask me.

Yesterday, my son who loves to hug people (even though I’ve tried for years to get him to stop and only hug family), hugged someone who didn’t want hugged and he refused to let her go when she asked.  He even tried to kiss her!  Why did he do this?  Well, it’s hard to figure out, but part of it is his age — he’s 17 now even though he looks about 12 most of the time and part of it is all his life he has heard from others “it’s okay” (said in that “he doesn’t know any better or understand” way).

Perhaps if years ago, others had joined me in the “no hugs” rule he wouldn’t have done it.  I’ll never know, but perhaps this post can help another parent who is desperately trying to train her child to behave in a socially appropriate way.  We all know training isn’t always an easy task, especially with kids who have a mind of their own and a desperate need to become independent creatures.  It can be even harder when that same child has a disability that limits them in some way and yet they have the same desires and need to become independent as the typical child does — the big difference?  Most of society believes they can’t (either achieve those goals or understand), so society inadvertently undermines the parent that believes the child can (might need some help along the way) and is attempting to train the child.

I remember what my son’s special ed preschool teacher said once to a fellow teacher (regular ed) shortly after my son dashed through the hall without his pants on, “Sure it’s cute now, but it won’t be when he is in your class.  Please don’t laugh and encourage it while he is in my class.  I’m attempting to train him to do what is expected of all our students.”  I know it’s hard — it’s hard when the typical child does something cute but totally inappropriate and yet, we as parents and society expect that child to learn it is inappropriate and we teach them.  That’s all I’m trying to do with my son who just happens to a disability — he is a future adult that needs trained, he’s not always going to be a cute toddler or child, one day soon he will be a man.  Before you say, but with his disability he won’t understand — newsflash, my son can tell you what is appropriate and what is not appropriate when asked (most of the time); yet there are days the “it’s okay” must play louder in his head than mom’s (or dad’s) voice saying “inappropriate.”

County Special Olympics Spring Games

The athletes came, they competed, they won medals and then they left.  Nick competed in the Spring Games doing the softball throw — took a gold in that competition (then again that boy does have an arm on him); the standing long jump (we joke that Nick is living proof “White Men (or boys) can’t jump” but he is getting better — took a bronze in that competition (he actually got off the ground and went forward!); and the 100 Meter Run (now if you know Nick, you’re probably wondering who thought he could run 100 Meters — we were too, but he didn’t do half bad — took home a silver medal.  (Mitchell quickly points out that is because the other two athletes tied for first but we’re not going there — Nick was second that’s all we need to know.)

 

I took out the slide show — the music was annoying, sorry about that.

A Wish continued….

As promised here are more pool pictures (please excuse the cloudy water we hadn’t gotten all the mud out, Nick had throw dirt clods in the pool while waiting for it to be ready for swimming)

Nick entering the pool for the first time.

Mitchell entering for the first time.

Mitchell entering the pool with Nick & Zachary swimming in the background

I really need a waterproof camera to get better shots of the boys swimming as I can’t figure out how to be in the pool with them and take pictures (plus leaving my camera on the pool deck isn’t going to ensure it stays dry with my boys).  The pool is almost completely clean again.  Jeff and I figure one more good vacuum job and it will be crystal clear from the pool floor bottom to the top.  We spent about 2 hours swimming yesterday after being at Special Olympics all morning it was such a nice relief to be in the cool pool after being out in the hot sun all morning.

Wishes can come true….

There once was a boy who had a wish.

He wished he could swim in his own backyard.  So he told his brothers of his wish to swim in the backyard.

They agreed that swimming in the backyard would be grand.  However, they asked Nick how that could happen as there was no pool in the backyard and Mom and Dad seriously frowned on digging holes in the yard.  Mitchell also pointed out that getting water into the backyard would also prove difficult since they had broken the faucet in the backyard years before and Daddy had turned off the water instead of fixing the plumbing.  (Now, to explain, Daddy had fixed the plumbing several times before deciding it was cheaper to leave it off since the boys couldn’t seem to stay away from the faucet.)  So, what were the boys going to do to get Nick’s wish fulfilled?

They asked Nana, Papa and Great-Gram about a pool.  All three thought it would be nice for the boys, but they offered no solution.  The boys tried to dig a hole for a pool, but Dad got upset and made them fill the hole back in (fortunately, they didn’t get very deep).  When questioned why they were digging yet another hole in the yard they explained, “Nick wants a pool.  So do we, it’d be so much fun!”  Mom and Dad explained we couldn’t afford one, but maybe one day we could.

For years, now many people had suggested to Mom that she check into getting Nick a wish granted from Make-A-Wish.  Mom always hesitated because she thought Make-A-Wish only granted wishes to children who had life threatening illnesses and she didn’t feel Nick’s Down Syndrome was life threatening.  After hearing from friends who had children with other disabilities that were more life-altering than life-threatening, Mom decided to check and see if Nick qualified.

Make-A-Wish now has parents submit their child for a wish.  The parent provides Make-A-Wish with the child’s diagnosis and the child’s physician’s name.  The physician then determines if the child’s diagnosis will meet Make-A-Wish’s qualifications.  I submitted Nick’s name and his physician’s name and then life went on.  (I didn’t mention any of this to Nick, because I wasn’t certain he would receive a wish.)  Several months later, I received a phone call saying Nick was being granted a wish.  I told them as much as the family would probably enjoy a trip to Disney (as so many children have that wish), that for our family, it would be best if Nick’s wish of a pool of his own to swim in be granted.  As I explained, Disney is a one-shot wonder for many families and if Nick would have a melt-down (or worse his parents from stress) it wouldn’t be a pleasant memory, but a pool would be something everyone could enjoy for years to come.  So, they explained the process and a pool would be delivered.

In late April, we received the phone call that Scott from The Pool Installers was ready to start installing the pool.   It was a little early, but if we waited too long, Scott would be too busy to do it.  So, the day arrived and the first task was to remove a ton of dirt and level the area where the pool would go.

After the area was leveled, the frame work went up:                        Then the liner and the water:

And more water:                                                         Nick began wonder just how long it would take:

Once the water was in the pool, Scott and his team came back to build a deck.  The boys were excited because they got to help by handing Scott and his team what they needed.

With the deck complete, only one thing remained for Scott’s team to complete:  the heater which would allow Nick to swim (two extra months, according to Scott’s Dad at Family Pools) in water warm enough to help his muscle control.  Once Scott completed that he wished us well and was gone.

The following Saturday the boys and Mom put together two deck benches (to hold pool toys and pool equipment).  Nick’s an excellent boss (loves to tell others what to do), but not so much a helper, thankfully Zachary is an excellent little helper.  After the deck benches were put together the boys begged to be allowed to swim (I forgot to take pictures of that) since it was 80* out that day.  So, everyone got in and splashed and played while Mom and Dad tried to vacuum the pool.  I guess we looked like we were having too much fun because later that evening Max (golden retriever) decided to try out the pool.  Unfortunately, that wasn’t the smartest idea that dog has had.  Fortunately, he didn’t drown (we’d put the solar cover on so the possibility of getting trapped under it was high).  Unfortunately, he put a hole in the pool liner which we didn’t discover for a few days (thanks to all the rain we had). By the time we discovered the hole several gallons of water had drained out.

Found out the hole was patchable, so off to Family Pools Jeff and I went to get a patch kit.  We patched the hole and refilled the pool.  Then the rains and cool weather set in — so no swimming.  We decided we needed a clean area between the two decks to keep mud from being tracked into the pool.  To that end, we decided to frame off the area and fill it with pea gravel (and eventually we’ll made a stepping stone path as well).

I’ll post more tomorrow on our progress of creating the clean area.  Thirty-three bags of pea gravel wasn’t enough — we needed more.