It Takes a Village to Raise a Special Needs Child

I will still be blogging her but am changing over to have all of my posts in one spot so if you would like to check out all of my posts they will be all going to my new blog at https://ourpuzzlinglife.blogspot.com

While going through some of my earlier blog posts I came across this little gem (it is attached at the end of this post) it was written about 10 months after our oldest was diagnosed, and as I re-read it I found myself shaking my head in agreement, because the one thing that holds true no matter what when raising a child (or multiple children) on the spectrum you absolutely must have a great team behind you.   So 5 years into our autism journey, 2 diagnosis down with a third on its way and 5000 plus hours of therapy, I can honestly say it takes a village to raise a child on the spectrum.

We as mothers want to be able to do it all, we need to realise that it is not a bad thing to ask for help and in the case of our special needs children it is an absolute must, because it is hard to raise a child on the spectrum it is long hours and sleepless nights, It is a test of patients, you cant just go to the local play groups and ask for others opinions or call up your mom or best friends and say what do I do?  It requires skills and training that can not be found in a parenting book or on line, we are not trained to know everything about raising a special needs child because no matter how much research you do you are not an expert,  an expert on your child yes, an expert in any of the fields of therapy no way there are just to many of them.

There is more to therapy then meets the eye and this is where a great team comes into play, you must have a team of therapists and workers to help you in your journey through the very chaotic world of autism. So making sure that you have the right team is very important, if you are butting heads with someone or really don't like what is being done or are not comfortable with communicating with your team then you need to reevaluate your team and maybe replace some team members. I have over the years had not so nice words with workers sent to my house and on one occasion actually threw a worker out of my house and others I have simply said your style does not match my own not that they are bad people or bad at their jobs but we need to be able to work well together.  I am lucky that I currently have a really great team working with my kids. We have great therapists, and doctors, teachers and E.A's.

Having a good working relationship with your child's therapist is crucial to the development of your child. You need to be able to communicate your concerns and talk openly about the day to day challenges and successes.   You need to be able to change things on the go and realise that sometimes you may not be able to see the end results so you need to trust in the fact that your therapist really does know what they are doing,  Bringing a worker or in our case lots and lots of workers into your home and into your lives can be hard it can be hard to trust someone that will be working so closely with your little one, and it can be hard to not want to take over, sometimes you need to take a step back in order to be able to allow the workers to form that bond with your child that is needed for success and yes this can be challenging at times especially when your child is in meltdown and you know you could fix it or they are stimming and you could easily redirect them.  In order for your team to be able to best work with your child you need to trust in your team and realise that there is going to be a learning curve that not all days are going to go smoothly and that it is going to get worse before it gets better.  The people that work with your child care they want to see success and they like it when their is parent involvement (or so they tell me ;-) ) because it does take a team to raise a special needs child, and they know that no matter how much they work with your child if you are not on board it is not going to work, it needs to be consistent across the board in order to see results.

We do not only need a great team of therapists but we also need a great team of support.  A great support network can be a life saver during those days when nothing is going right, it may be as simple as the girl friends you call on the phone to vent to or a family member or friend that you know you can count on to come over and help out.  You also need a go to grizzly bear, the one momma bear you can call for advice no matter how small and that you know will not only give you great advice but have your back no matter what. Another great support is social media, the one thing about social media is it allows special needs parents to connect with others that are going through the same thing and has helped to create a wonderful network of supports on line.   Sometimes it is the local autism group where everyone just gets it, there is no judgement and at one point or another we have probably all been there.  Leaving a special needs child is much more complicated then leaving other children, you need to think of so much more before heading out the door and it can be a little overwhelming and emotionally stressful at first but respite care is so important to families of special needs, we need to take care of us so we can better take care of our children and we can't relax if we can not trust the person that is at home with our child so again you need a good working relationship with that person especially in our case where family members are to far away to help out.

Finding a great team of therapists, doctors, and workers, as well as an amazing support system can make a world of difference in the lives of families with special needs children.  So do not feel bad asking for help, stop beating yourself up inside because you can't do it all and embrace the fact that it truly does take a village to raise a child, and take comfort in the fact that around the world so many cultures still know the importance of having a large support network and family to raise our worlds children.

That's me for today living life one puzzle piece at a time and utilising my support network tonight to get out on a much needed date with my handsome hubby.

J.
And as you can see from my post below my views on this have not changed over the last few years.

MONDAY, JANUARY 18, 2010

A great team!

Some say it takes a village to raise a child, in the case of my son it takes a team, an incredible team of wonderful specialists, doctor’s and therapist’s. The many people that are involved in helping with Grayden have made it possible for both my husband and I to cope with his diagnosis but have also enabled us to provide Gray with the best possible care and support available to him with the help of these fine ladies Grayden has managed to come a long way in a very short period of time, his speech is starting to come along and every few days or so he is saying a new word. We are very slowly working on sensory issues and finding different coping mechanisms that work for him. I have been told a couple of times that Gray is doing so well because of all of the care and attention that I provide for him and that he is a lucky little boy to have me for his mother. I am not going to deny this, I work very hard to ensure that I am the best possible mother to both of my children and to make sure that they are growing up in a house hold that is filled with love, respect and security. I believe that a happy child that is allowed the freedom to explore many new things and learn at their own pace while being raised in a supportive home can achieve anything. I feel this way for both of my children and though I am not denying the fact that Gray’s life will be much harder for him then it will be for my other children I do believe with all of my heart that he can and will do anything that he puts his mind to and what an extraordinary mind he has. I know that he is different with me then with other people I am his comfort zone and a safe haven when the world seems scary and overwhelming to this little boy I am his constant. This both thrills me and terrifies me at the same time, I want nothing more for my son then to feel safe and secure but realise that unfortunately as he grows older I will not be able to be by his side at all times and that very soon he is going to have to go out into the world on his own and that the world is going to seem very overwhelming to him and very, very scary. I know now that as much as I would like to be everything to him I can not he needs a team to help him along the way and as much as he needs a team I too need a team of people that I can turn to for support and I am grateful for the wonderful family and friends that I have to help me along the way.

“Lead me, guide me, walk beside me”

Our Home made Pancake Recipe

Weekends are made for pancakes.  One of the simple pleasures we all enjoy is our pancake breakfasts on Saturday mornings, everyone in our family loves the delicious taste of fluffy pancakes, and I love the closeness it brings to our family it starts our Saturdays off on the right note.  I mix up a double batch of our homemade pancakes with a little help from my beautiful assistant lady Grace and the kids set the table, we warm up the maple syrup and cut up some fresh strawberries or blueberries to go with them, every once in a while we make bacon and it always gets gobbled up as soon as I place the plate on the table and my hubby always seems to find the need to taste test it right out of the oven.   Once I have a heaping stack of fluffy, golden brown pancakes we all sit down to eat and share some laughs around the table.  We always make our pancakes from scratch, for a couple of reasons they taste soooo much better than the premixed boxes, are healthier for us and don’t have any of the yucky stuff that makes my baby girl sick, but making pancakes from scratch doesn’t have to be time consuming, I mix up a large batch of the dry ingredients of my mix  to keep on hand and then when we want to make up pancakes all we need to do is add the wet ingredients. 

I've had this recipe for so long I don't even remember where I found it, the paper it is written on is splattered with mix and slightly faded, always a good indication of a well loved recipe.  

Homemade pancake recipe

Dry Ingredients Wet Ingredients

1 cup flour 1 cup milk

2 tablespoons of sugar 2 tablespoons vinegar ( mix into milk and let sit for a

1 teaspoon baking powder few minutes )

½ teaspoon baking soda 1 egg

½ teaspoon salt 2 tablespoons melted butter

Pre-made Mix Directions

Mix together 1 cup of your mix with 1 cup milk, 1 egg and 2 tablespoons melted butter.  Ladle spoonfuls of mix onto a heated skillet flip when you see bubbles appear in the centre.  Garnish with your choice of fruit and real maple syrup.   If you are making the recipe from scratch mix together all dry ingredients then add in your wet.

(I double the recipe to feed my family of six keeping in mind that  four of them are males and eat a lot!!! We usually have a few left over that the kids will either grab and eat as a snack or that I wrap up and throw in the freezer for a quick breakfast through the week.  I do on occasion whip up a very large batch of pancakes for just this purpose I freeze them and then we take them out and throw them into the toaster to heat them up. )

That’s me for today living life one puzzle piece at a time and enjoying some yummy pancakes.

J

Finding our Calm and Creating a Calm Down Jar

I love my daughter, I love her smile her laugh and the way she sings off key, I look at her and I see me. It is often remarked that she is a mini me in looks but she is also a mini me in temperament as well.  The two of us butt heads often and she is the only one of my kids that can bring me from calm and collected to lunatic crazy in 60 seconds,  she is also the only one of my kids that will with no qualms look at me and say no, she doesn't even bat an eye when she talks back and on more occasions then I would like to admit I have not only heard my own words said back to me but it has been done in my tone of voice standing hand on hip toe tapping.  Yes she is me, stubborn, strong willed and always wanting the last word.  But she also is emotional, extra sensitive and has a strong need to feel secure even while arguing, she like myself has very strong emotional responses to situations.

This leads to difficulties in discipline as we are so similar that it is like well talking to myself. :)  so I have been working on keeping my cool, and remaining calm, a very difficult thing to do when faced with a strong willed little girl.   I was on Pinterest ( 0ne of my favourite time wasting sites) and saw the calm down jars. Well now this might just work for both of us it gives her time to calm down and gives mommy a few minutes to get cool calm and collected.  So we grabbed a mason jar and raided our crafting stash and here is the awesome calm down jar we created together,

 We had to pretty it up a bit because well Lady Grace and I love all things pretty and sparkly.
So here is how we did it, really really easy,  grab a clean mason jar, and some sparkle paint ( ours came from the dollar store in a pack of 8 for $3 ) we choose 3 colours, purple, pink and silver, mixed them together with warm water and shook the jar like crazy, at first you may see a few chunks as the sparkles and paint settle and separate, but the more times you shake the jar the nicer it looks, the colouring from the sparkle paint tints the water a pretty colour so it looks nice even when just sitting there, and of course to make it even more pretty and girly we choose a pretty fabric scrap, trimmed it down and tied it with a pretty piece of lace then i added a little tag and voila a beautiful and functional calm down jar.

We used it this morning after a mild meltdown over some buttons not perfect on her sweater and it worked like a charm.  My only other suggestion would be to try to find a plastic jar for safety reasons of course.

Thats me for today just trying to live life one puzzle piece at a time.
J

Moderately OK Military Wife and Friend, Kick Ass Autism Mommy

Recently it was brought to my attention not once or twice but three or four times that I have been M.I.A lately and that some of my friends and fellow military wives are wondering how I am doing, and some are feeling slightly ignored.   With the guys back from Christmas leave and most of them right into the swing of training exercises and winter warfare, I can’t see that I’m going to be having anymore free time on my hands.  I also know that they really don’t understand just how busy my schedule is or how difficult it is to transition my kids when daddy goes away,  Being a military wife is hard and comes with lots of ups and downs, it requires adaptability and strength but even this tough group of women can’t understand the strength and stamina it takes to be a military wife and special needs mom to not one but three kids.  

Military wives come in all shapes and sizes and each has their own unique personality but really when it comes down to it they can all be grouped into a few categories when it comes to their views and how they act in regards to their husband’s career,  there are the “It’s a pay cheque, and I don’t give a shit wives”, you know the ones, they are always heard spewing “they don’t own me, he joined I didn’t” I can do what I want, they have no respect for the rank structure and are constantly complaining about anything and everything that involves the military or military housing,  Yes this group of wives can be very entertaining while I am bored and scrolling through the fb wives groups.  Then you have the “Proud as a Peacock wives”  they love everything about the military and their man’s role in the military, they never miss a parade or ceremony of any type and always, always, make sure they are dressed to impress and make sure their kids are too, their houses are decked out in more support our troops and I love my soldier paraphernalia then the Canex gift shop,  you can see these ones coming a mile away.  “There are the what’s your husbands rank wives”-- they know the rank structure better than some that are actually in the military and feel the need to tell you every time the opportunity arises of their husbands rank, they purposely search out and make friends based on how it will affect their husbands career and look down their noses at anyone that is of a lower rank. the irony here is that most of these wives do not have a career of their own and therefore are skirting by on hubby’s coat tails with no personal accomplishments of their own to be proud of.   Then there is the more elusive group of wives the “Middle of the road wives”  they are proud of their men, probably have a support our troops magnet on their vehicle and go to the parades and events when they can, they complain about kit explosions but are always there to help find an elusive sock or piece of kit.  The military is a part of their lives but it does not take over their whole life, this category is where most of my friends fall in, like minds attract like minds after all.

I am a middle of the road wife and friend and moderately ok at that, I love my husband and I am very proud of the job he does, but I have never been to a parade and when I go to an event or dinner I am more excited to be getting out of the house kid free and to spend time with my friends  then about the event itself.  I complain about tripping over his kit and he prefers I don’t wash his uniform, apparently it is important to remove all appliques and velcro things and make sure the pockets are empty, who knew !!   I support the rank structure but don’t actually know what they all look like,  not because I don’t care but because I have so many other things I need to know, like what an IEP is, what ABA, IBI, IPRC, OCTC, O.T, ABC, APD, BD, HFA, LFA, SIB and DX just to name a few.  I need to juggle scheduling of services, doctors and specialists appointments for three kids, we have integrative workers, E.A’s, Speech therapists, and developmental services that come to the house, and at all times I am on guard for meltdowns, sensory issues and stim behaviour.   So when a fellow military wife looks baffled that I don’t know something about my husband that I apparently should or comments on the fact that I never attend parades or that I have been missing from the social group, it is not because I don’t want to go out and socialize or that I don’t care about my husbands career, or because I am not proud of everything that he does it is because I can only juggle so many balls at one time, and because quite frankly the thought of taking my kids to a parade terrifies me and even though some friends have offered to help, it is a recipe for disaster, crowds of people that might accidently bump into one of my kids, noises and smells that trigger sensory issues that could lead to a massive meltdown, meltdowns don’t just last for a few minutes they are not a temper tantrum that can be quickly dealt with by a stern talking to or smack to the bum,  they can last for hours or days, they can bring with them self injurious behaviour that has my one son, banging his head against the ground, or slamming his face into walls or pieces of furniture,  So yes I would like to take the kids and go see daddy dressed up in his DU’s but the repercussions of an autism meltdown are just too high, and it is a risk I am unable to take.  So no matter what the other military wives think I am ok with being moderately ok as a military wife and friend because I know that it makes me a kick ass autism mom.

That's me for today just trying to live life one puzzle piece at a time.
J

Just my views on good old Jenny and the whole Vaccination thing.

Ok I wasn’t going to do it because the topic is so controversial and quite frankly I truly feel that it is the parents right to choose what they feel is best for their child and that they should not be crucified for it, but I can’t help myself, it has been sent to me, people have asked me my opinion and I have seen it plastered all over facebook.  First let me say that as a parent of children on the spectrum I feel nothing but sympathy for Jenny Mccarthy, not because I agree with her views or her methods but because I have been there and I have lived through the agony of not one but two autism diagnosis and a third one in the works and let me tell you it is not an easy thing to go through not the first time not the second time and not the third time but the first time you hear the phrase your child has autism it reaches to your core.  It is right up there on the list of most stressful life events, it can tear at a marriage and ruin friendships, it shows you who you can count on and who you can’t and a lot of the times these are people that you would never have guessed you would be hurt by including family members.  An autism diagnosis is a life altering thing.  It makes you question everything and rocks you to your core with fear and self doubt, the “what ifs” can tear you apart if you let them and above all else it shatters dreams, dreams of taking your child to little league or tossing the football around, of teaching your child to drive a car, of having a normal childhood.  Will you ever hear them say “mommy” or the heart melting “ I love you “  will you ever be able to hug them without them cringing at your touch.  These are just a few of the things you go through when your child is diagnosed  with autism,  and this is why I have nothing but heart felt sympathy for her because all of that is hell on anyone and I would not wish that on my worst enemy.   I can not imagine living my life for so long thinking my child was on the spectrum only to find out many years latter that they are not, I can’t imagine the frustration you would feel at all of the time spent on therapy and with doctors only to find that you were dealing with something else, it will feel like you had wasted valuable time.  The fact that the article now appears to be false is disgusting that someone felt ok to play with peoples emotions like that, it is irresponsible of them to publish an article that is not backed by facts, and to open the door to yet another media frenzy surrounding an already controversial topic, unless of course that was the plan all along to once again get people talking about the vaccine controversy in that case they have succeeded quite brilliantly.  

So yes Jenny Mccarthy has my sympathy and I feel for her and her family during what must be a difficult time, dealing with such horrible gossip and bad mouthing.   As a mother she made choices, she tried to do what we all want to do she tried to help her child in the best way she knew how, making choices that were probably scary at times, but I can guarantee at the root of all of those choices she had one thing in mind the welfare of her child and in trying to help him,  she made choices that parents of “normal” children never even have to contemplate, and for someone to judge her when they know nothing of her struggles shows just how shallow and cruel people can be to each other.   Until you have had to make a choice for your child that causes your heart to break into a thousand pieces and makes you question everything you have ever know do NOT stand on your high horse and talk smack.  

So lets talk vaccines, vaccines are controversial for a number of reasons and a large group of people and not just our good friend Jenny thinks they are unsafe, Personally I feel that they do a lot of good, but since my oldest stopped talking or interacting shortly after receiving his MMR vaccine I am a tad bit skeptical on this subject, and have done a lot of research into it.  Just like every other drug, vaccines have side effects and unfortunately doctors and drug companies do not tell parents this,  and these side effects happen more frequently than they would have you believe,  for instance the MMRV vaccine causes seizures in 1 out of every 1250 children it is given to and doesn’t normally happen until 5-12 days after the vaccination was given, in severe cases it can cause long term seizures and brain damage.( don’t believe me feel free to take yourself over to the website for the center of disease control, thats where I just got the stats from)  So my oldest has autism( a neurological disorder) but did I also mention he has seizures as well,  did you know that seizures are quite common in children on the spectrum in fact our specialists have asked us to have a neurological assessment done on our second son as they feel he may be having petit mals. (wow that is the first I’ve sharen that little tidbit which means I better call my mom tonight before she hears it through the interweb. ). Now put yourself in my place and in the place of every other autism parent that saw changes after a vaccination,  see why I’m a little bit leary of this particular vaccination.

So yes people are starting to questions things because when you start to do the research things get real.  Do I truly believe that vaccines cause autism to be honest I’m not sure, I think for some yes, but not all, but that is the real problem no one person can say what causes autism, because we just don’t know, and even us autism parents disagree on the causes. In my families case it is most likely genetics either that or we just have really really bad luck.  Am I upset that Jenny has gone public with her feelings and beliefs no I can’t say that I am because it has done one thing it has forced people to look at vaccinations a little more seriously and not just blindly follow suit.   It has brought to light the fact that there is more to vaccines than just meets the eye,  for instance did you know you can order them without the added preservatives and chemicals ,  or that you have the choice of asking for a more delayed schedule if you are not comfortable with the current one which actually ends up meaning your child may not need all of the vaccinations anyways depending on age , or that you can opt out of a particular vaccination all together like the MMRV ( measles, mumps, rubella and chickenpox) and that you can request it as just MMR which drops the chance of seizures down to 1 in 3000,  these are the things that we as parents need to know so that we can make the best choices for our children,  do your own research and make your own choices but remember you have to live with those choices and I’d rather live with autism than risk losing my child all together to a disease that could have been prevented.

That’s me for today weighing in on a controversial topic and just trying to live life one puzzle piece at a time.

J

Dungeon's, Dragon's and a Problematic Princess.

Dungeons, Dragons and a Problematic Princess

So as per a previous post I have started the horrible no good job of decluttering and cleaning the “dungeon”  since a good portion of the mess down there has been caused by dragons and one princess I felt it only fitting to drag them down there to help in the mission of clearing the clutter.  So as any mother of young kids can attest the cleaning and decluttering went something like this,  pick up a toy, pick up a toy, OH look a toy I haven’t seen in a few months must stop to play with long lost toy that I could have cared less about owning a day ago and haven’t touched in a year except to throw it out of the toy box while looking for a toy that I actually play with. (yes i know that is a run on sentence, but it so accurately describes the process)  Then of course after a few minutes I would remind them from across the room that we were cleaning not playing,  which would in turn cause them to sign rather off key “clean up, clean up, everybody clean up,” and then the cycle would start again. This of course was interlaced with fighting between them over who had cleaned more, why the other wasn’t cleaning and the inevitable “MOMMY”, she isn’t helping!!! Yes it is always the princess that gets distracted and forgets what she was doing, which in turn leads her to rather dramatically claim that it is so unfair that they have to clean up and she did not make all of this mess and my new personal favourite, “mommy why do you make us do all of the work I don’t see you cleaning!”  Must say it takes all of my will power on this one to not throw her in the dungeon and have one of the dragons swallow the key and yes one of my dragons would not even think twice about eating a key or anything else for that matter gotta love pica traits.    Note to self what the hell were you thinking involving the mini mess makers in the cleaning and decluttering process. Well i know what i was thinking and technically the theory is good, BUT only in theory not in reality.  i was thinking that they needed to learn responsibility and help to clean up the disaster of a rec room they had a hand in creating.  Yeah that lasted all of a half hour after which time i decided for the sake of my sanity and because of my OCD ways it was better to just ignore the rec room portion of the basement until another day, preferably a school day!

Besides the honest and real reason I started with the basement may have had something to do with the fact that my awesome hubby just bought me a new stand up freezer, can you hear the angels singing, yes that is right a beautiful and large stand up freezer, and after months of dropping hints about how much better it would be to not have to crawl into the bottom of the freezer which involves standing on a stool, and nonchalantly mentioning how our family has doubled and that our old freezer is just not working anymore as it’s too small, he finally took the hint and over Christmas leave we went out to “look” at freezers i thought we would look around, price match yada yada but no as is hubby’s way, we walked in looked at a freezer that I thought was big enough and he turned to the sales lady and said, i’ll put that on debit, shopping just really isn’t his thing, but hey works for me because I have a brand new stand up freezer being delivered today, did I mention it’s a stand up and that it’s BIG, sigh yes I am pathetic and now get excitement over new appliances, you should have heard me when we got our new washer and dryer, though the novelty of those did wear off rather quickly.  A sure sign of becoming a grown up your big exciting purchases now come in the form of a household object  and need to be carried in by a delivery crew.   

So the crunch was on the dungeon needed to be cleaned, so leaving the rec room area for another day I tackled the laundry area and bottom of the stairs which is turning into my mini office area and creative zone.  The laundry is neat and organized and my new creative zone is started it is lacking any of the added touches that are my signature style but it is clean and clutter free so now it is just a matter of putting a few finishing touches and prettying it up a bit and we are good to go.  

Well that’s me for today just trying to live life one puzzle piece at a time and anxiously awaiting the delivery of my new stand up freezer.

J