A master craftsman in the making

I drove Will out to my parents home last night for Christmas Eve. (This is when my family traditionally gets together to celebrate together). I had to run to work, but my father grabbed me before I pulled out of the driveway. He asked me if I could look at the toolbox he was putting together for Will. I did veto a knife an hacksaw, but saw nothing else inappropriate for him. I was a little puzzled by the idea of Will getting the toolbox. I assumed that Will wouldn't like it or be ambivalent about it. I tried to prepare my dad (it was obvious he was excited about this gift an I didn't want him to be too disappointed when he didn't get the reaction he was hoping for.) for a less than thrilled reaction.

Turns out Will had asked for a tool box - he just didn't know he'd be getting it for Christmas. After I got out of work I picked Will up and brought him home. He told me all about Christmas at granny and papas. He was talking a mile a minute...I asked about the tool box, and he told me how cool it was and then said he wished he had asked papa for some scrap wood to go with it to start building his own creations, but that he was excited to be able to help me fix things around the house.

Well, today after we had our Christmas morning I went down to the basement ad grabbed a couple pieces of of wood for him to learn how to hammer a nail. His face lit up. I showed him what to do, with his tongue stuck out of the corner of his mouth (he was concentrating very hard) he hammered in 3 nails all by himself. Then he wrote his name on the wood and declared it was the new sign for over his bedroom door. So that is where it resides in all it's glory. He turned to me after and said he thinks he might be a master craftsmen by the time he's 12.

This is autism.....but more importantly....this is my son and the light of my life. (No fingers were hurt in the making of this sign)

What a wonderful Christmas

Even though I had to work last night while my family had their Christmas Eve together....family, fun, laughter, love (and Wills favorite....presents). Even though I am at work now and have been since noon today (at a new house- and certainly not a favorite one). Even though Will threw up last night and had diarrhea last night and this morning.....

This has been a wonderful Christmas. My son earned money and bought me a present for the first time ever, my family was more generous than I deserve, I watched my so write a note to Santa last night that asked for his granny's back to be better and the excitement in his eyes when he came down the stairs and saw that Santa HAD come, brought presents, filled his stocking, eaten the cookies, drank the nog, and left him a note in return. All these things make this the best Christmas EVER!!! Just like Will said- this Christmas is OUT OF THIS WORLD!!!

I don't need things to be perfect, or even close....all I need isn't family and friends to know that I love and treasure them all year long. Will, my family and my friends are what makes Christmas wonderful- whether we are together or apart...you all have a very special place in my heart. I love you all and feel very blessed tonight.

Best Christmas EVER!

Will has never bought me a Christmas present. Every year my mom asks him if he wants to get me something...every year he says no. Every year I offer to give him $5 for a present for dad, and $5 for me. He declines every time.

This year he talked with granny and they agreed he would do chores for his granny when he was over to earn money to buy me a Christmas present. My mother tells me that he didn't like the idea that I didn't have a present Christmas Day.

Yesterday he expressed his disappointment he wasn't going to get the opportunity to get me something till after Christmas. We came up with a plan... We drove to granny's hair appt this morning to pick up an envelope. Then Will went with staff this afternoon to get my present. He said I needed to go to pick it out, I told him to surprise me. He got home and couldn't wait to give me my present. I was so impressed with my boy. He went to my favorite store Leapin' Lizards and spent almost the entire amount on me.

I got an "Ornery Dragon" figurine and a "cute piglet" figurine. I also got a small quartz crystal and a mood ring (Will got himself a matching mood ring). I couldn't have asked for a better Christmas. Thank you Will for the most special present a mommy could ever ask for. I love you more than words can say....

How much Christmas do we give up for our children.....and is it enough?

I ask this because I have found over the years I have pared down Christmas by more than half. I used to want to join in everything! Now when someone mentions a holiday visit my first thought is: "How will this impact Will?" Will it be too overwhelming for him? How long should I stay? What have I already committed to?

I say now, but it's been a few areas since many people have even asked. Will and I have my family Christmas party a week or two before Christmas, Christmas Eve at my parents- this year Will will enjoy this without me as I have to work. :(. Then we have Christmas morning together before his dad comes to get him. This seems to be about his threshold including going to his uncles with dad on Christmas.

This year while talking to Wills dad he mentioned Christmas Day (from 11:30a on) they would stop over at a few friends homes before going to his uncles home to celebrate with his dads family. I mentioned that it sounded like a lot for Will to manage. His dad got pretty defensive, because he wants to see all his friends AND family on Christmas. He calmly explained that they had been invited and he didn't want to make multiple drives to the same area. All perfectly logical, however I have to wonder, is there a better way to plan out Christmas to have both their needs met?

I understand wanting to see your friends especially this time of year, but shouldn't Wills sensory needs be paramount in the decision process? I'm really not trying to say anything negative about his dad (I'm really not, no matter how he would read this post) all I am saying is that if Will does too much/has too much sensory input it can and usually will affect him for days. There will be an increase in meltdowns and general frustrations, exhaustion and tearfulness, and thats just Will's response -( all of which falls on my end of the week so once again I deal with fallout from dads decisions)

I will admit that I am more than a little resentful at being placed in the position of having to give up a lot for Wills well being when his dad doesn't make the same choices. Now, I understand that what I consider the "right choice" doesn't mean that others will agree and make the same choices. I also want to make it crystal clear that I DO NOT resent having to make the sacrifices and tough choices I make for Wills sake. I would and ALWAYS will do whatever it takes for my son willingly. The resentment comes from feeling like I am the only one who makes these decisions. (I also want to be clear, I haven't lived with Wills dad for 2&1/2 years so maybe there are sacrifices he is making that I just DON'T see.....see? I can try to be fair towards his dad)

While I don't resent making the decisions I've made for Will, I do feel sad sometimes that I rarely see friends I love and care about, I feel as if I've given up some friendships that are truly missed.... While I say that I have given up on friendships we must remember it is a 2 way street. I may not have made those phone calls but no one called me either. Makes me sad, makes me wonder....we're they only fair weather friends? Were/are they just going through a lot in their own lives? Or is it just that they can't handle the changes in my life? I know I have a lot on my plate...divorce, MS, work issues, and most importantly a blessing in the form of a child who has different needs/capabilities than any other child. I know it's a lot, and some can't handle it. That's why I was given this amazing gift of Will and others weren't.

So, I happily choose to decline invitations (sometimes with a sad heart) and make the tough decisions that others can't/won't make. I will continue to pick up the pieces when things have become too much for Will. If people can't or don't want to be a part of our lives and love and support us in this journey called life that's ok. I understand, because I know there are people in our lives who have been there right along, calling to make sure we are ok, listening when I need to talk, offering to bring over ginger ale, ice cream, pumpkins or whatever we might need as well as continue to nudge me- sometimes not so gently, and thanks for that, truly- to get out and take care of me sometimes. These are the other blessings in my life that I love and cherish almost as much as Will.

So yes, for those kids who need less, most of us will gladly (if not also sometimes sadly) give up more especially during these crazy sensory overloaded holidays. For those who don't, I will try not to judge, I will keep doing me and you can keep doing you.

Christmas holidays

From about the week before Thanksgiving to a week after the new year things can get a little bumpy at my house. There are plenty of good moments, but we certainly see an increase in bumps and harder moments.

Will is doing so great this year, but the sensory overload and extra demands are making it a little rougher. Evidenced by his happy thought "I want to kill myself" tonight. While I don't doubt for a second that he is struggling with happy thoughts I do know that the majority of his day is spent much more happy than that. Especially when there are very low demands being placed on him.

Because of a new law stating that a program review of an IEP is held if a child has three or more restraints/seclusions we had ours Friday afternoon. During this meeting I learned some very disturbing/alarming news about Will. It appears that there have been at least 2 occasions when the OT has noticed his lips and fingernails turn blue. He is not oxygenating as he should. She has also noticed from his gait that he seems to be in quite a bit of discomfort- most likely in his joints. She also discussed that because his muscle tone is so low (I thought it had improved) that he really is as exhausted as he says he is. He really does only have energy when it is a preferred activity. He is saving his small amount of energy for the fun stuff.

What does all that mean? Well, it means a call to his doctor. It means we start at the beginning and check for everything. Do a full work up, including checking for lead and copper as well as deficiencies. Just when I think he has enough to deal with.....

I am so very grateful the OT came to the meeting Friday but I have to admit that I'm a little (quite a lot actually) angry this wasn't brought to my attention earlier. This is my child's health...he's turning blue! Doesn't this concern the school enough to contact and communicate with the parent?

But let's end this post on a happy note: we had our family Christmas party (moms side) this Saturday. Will did such a great job, including tolerating me reminding him to thank everyone for presents after he already had -sometimes more than once! His cousin sat with him while he played minecraft, Will ate dinner with the whole family and not just the garlic bread! So proud of my boy....oh I got a great gift in our Yankee swap too: a redneck sipper cup, a redneck wine glass, a woozie (wine glass cozy) and a single serving of wine in a box. All dressed up with bubble wrap and packaged in a popcorn tin! Now that's what this momma needed....

What I did on Christmas vacation

Well, for starters, I worked.  I did not get to take the week off just because Will had it off.  I did however get Christmas day off as my clients had gone home for the holiday.  Yeah!  So, other than work what did I do?  I spent that time with Will and/or reading.  That's right, no computer time for me.  No TV (ok, well maybe an hour or 2 of TV for the week, but for me that's saying a lot!)

I spent Christmas eve at my parents home with Will, my parents, and my brother and his wife Meg.  We had a great time.  Will got a trampoline and many other gifts.  We had a great meal and lots of family time until it was time for Will and I to go home.

Will at dinner wearing his crown from the Christmas popper

Joshua and Meg wearing their crowns

Mom and Dad wearing their crowns and dad holding up some lobster meat from the stew.  Not sure why that had to make it in the shot......

So, we got home, I let Will play with some of his new toys before bed.  He didn't realize that the present from Josh and Meg was a trampoline till I put it together.  He's spent more time on that than I can tell.  Thanks uncle Lazer and aunt Meg.... (don't ask about the name, Joshua won't recognize Will calling for him unless he's called uncle Lazer.)

Lots of bouncing.....

Had to make him stop to get a picture that wasn't blurry...

So, off to bed to wait for Santa........problem was he couldn't fall asleep.  I have never seen him this excited about Santa before.  He kept calling down asking if he'd been yet.  I had to keep going upstairs and laying with him till he fell asleep, but he kept waking up.  Thank goodness his presents were already wrapped.  All I had to do was put them under the tree and do the stocking.  I ended up with him "sleeping" in my bed. (tossing and turning and constantly waking up to ask if he could go down and check if Santa had been yet.)  Needless to say, no sleep for mommy.

Christmas morning saw us up and down stairs (more or less awake) at 5am.  What a morning that was.  He even asked if Santa brought me any presents, he seemed a little sad that I didn't get anything under the tree- but soon lost himself to the excitement and wonder of too many toys and games. :-)

The smiles are such a wonderful thing to see.

STAY AWAY FROM THE TOYS!

The rest of the time we spent playing and just being with each other.  We played all of his games.  Scrabble, Battleship, Mencala, Cranium, I spy, and our favorite by a mile........Sequence.  Now, we already had Scrabble, but this was different, it had 6 boards, so we could play it 6 ways.  It was a lot of fun.
Of course, there was also a lot of wii.  As he got 3 new games for that, as well as some for his Nintendo DS.  Way too much time on electronics, but it was vacation so he had a little (LOT) of leeway.  We also did some crafts and other activities:

made a hedgehog, raccoon, and a bone out of some model magic type stuff.

He was looking for gems and minerals in this clay brick.  There are 13 in there.  We will get back to digging as soon as I get him some more comfortable goggles.  I tried these and he's right.  They hurt!

And lots of drawing and paper crafts.  He is very imaginative and thanks to his Grampy, he has all the paper he could want to make his computers, games etc.....

 Vacation was such a nice time with Will and I already miss it.  I spent a lot of the time not talking to anyone else and jealously hoarding all my time with Will.  I guess it's time to start coming out of my hibernation and joining the world again.  Although, I don't think I'll spend as much time with computers and TV as I used to.  I definitely enjoyed not being a slave to them this past week.

Hope your vacation was great as well.

William

I have spent A LOT of time thinking, worrying, praying over my son.  Wishing I could make it right for him.  Make his journey a little easier.  Fix all his problems, and feeling incredibly guilty that I can't.  I mean, I'm his mom, I should be fixing this stuff.  

I know, I know, this is very unrealistic of me.  No one has the power to do what I feel I should except God, and He has his reasons for everything he does.  I know in my head that I am doing all I can, and I'm doing enough, I really do.  The problem is my heart just won't acknowledge this information.  My heart refuses to accept that I am not a super hero with the ability to make everything right.

I don't know if my heart will ever catch up to my brain, or if this is really just a "mom thing".  Are we mothers destined to always feel like a failure with our children?  Or am I just overly hard on myself as an individual?  I really don't know the answer to this question, and doubt I ever will.

Anyway, As I've been pondering and worrying, I had my mother fill out a form to nominate Will for a $100 gift card to DICK'S SPORTING GOODS.  I had mom do this because she is the most eloquent person I know with the written word.  I am not a writer, no mater how much I pretend to be on my blog. But then again, I am a work in progress, so I guess I am a writer in progress too?  Ha!

I received a phone call from my mom today telling me that she got a phone call about the gift card.  They want Will at the store Sunday at 10am.  I don't know if he won, but I think it's a good guess!  I got the morning off from work to take him.  Yeah!  Like I'd miss that opportunity!  Tomorrow I am going to meet a new person who will be working with Will every week in the home.  This will be on things like tying his shoes, safety and appropriateness in the community, and other life skills.  Yeah!  We have been without anyone for 2 months!  So excited!

So, not only are we getting section 28 (the in home support mentioned above) and most likely a gift card for Will, all this is more than I ever hoped for for Will, but I received a call saying that he has been picked up for section 65 again!  This means we will have behavioral supports in the home!  I meet with the woman Thursday.  What a week.  This unfortunately does not mean anything will change as far as Spring Harbor, but it does mean that we have more help and support until this happens, and hopefully when he comes home as well.

I am so full of gratitude today I could just burst!  May not seem like too much to most people, but all these things are huge to me.  I started out the week very depressed thinking I could not afford to get Will Christmas presents, and stressed and guilty over this.  I still can't afford Christmas presents, but so what?  We will have the support he needs to get through this very stressful time.  I will be there with all the love I can give, and it will be a great Christmas anyway.  I am truly blessed this holiday season.

The day after

Today is the day after Thanksgiving.  I have been posting all over Facebook what I am thankful for.  My family, friends and most of all my wonderful son.  Now there are other things I am thankful for, such as having a job, a roof over my head, clothes on my back, and food in my belly.  I know the lst could go on and on, but I will stop there. 

Holidays have a way of being overwhelming to the general population.  They are much more so to a child with special needs.  We have now entered the most stressful time of all.  Most people can handle the bombardment of sensory input with a certain amount of ease.  These special children have a harder time.  They can not process all the input coming at they from every direction.  These children are on overload, from the word go. 

My son is one of these children.  I have been dreading the holidays for this reason.  I have been expecting melt down after melt down.  Tantrum after tantrum.  As well as a few bruises along the way.  I can't say what the rest of this season will bring, but so far my son has blown me away with his ability to deal with Thanksgiving.  We went to my aunts house as usual, Will brought his laptop to use as a way of calming himself.  He was a little withdrawn, but that's OK.  With so many people there, and a TV loudly playing a football game, I'm really not surprised.  When it came time to eat, he tried a few things I asked him to, (even though he didn't want them) and almost cleaned his plate.  He asked to be excused, he thanked people for moving for him so he could leave the table.  He thanked my aunt and uncle for the meal.  When he had had enough, he quietly asked if we could leave.  So we left.  No dessert for us, (but then again I REALLY don't need it).  We brought left overs to my parents house--my mother's on bed rest and so my parents didn't go--Will played a little there.  My parents asked him questions, he told them quietly and calmly he didn't want to answer questions.  When they continued, he got a little agitated, but remained in control.

We got home and had a quiet evening, with mo melt downs.  This is usually the time where he falls apart.  He holds it together so well for so long and then the least little thing will send him over the edge.  But not tonight!  Went to bed and fell asleep quickly.

We woke this morning, had a quiet morning, I put the tree together.  He was patient, but told me frequently that he wanted me to take a break and play with him.  When I was done with the tree, he actually helped me for a little while, I stopped and played.  Then I set on the lights.  Again he offered to help for a short while, encouraging me when he saw I was getting frustrated.  Told me it was OK and I could stop for a while o play with him since he missed me and didn't want me to get angry.  I stopped, we played, we laughed, and I got back to work.

When I was done with the lights I asked him if he was ready to help put up the decorations.  He said "Not now."  We waited.  I asked 3 times, every time I got the same response.  I finally, with a frustrated tinged voice, asked him to pick a time.  The cracks appeared.  He told me he didn't want to put the decorations up, he wanted to get out of the house.  We went to the library.  He researched hamsters, and took out three books on them to read at home.  I got out the decorations, he stated he would put on the garlands, and that I could take a picture of him holding them in his hands.  I must admit, I took advantage.  I turned off the sound to my phone a took a few more.

The rest of the evening passed in giggles and smiles.  There was no arguments over dinner, meds, bath, or brushing teeth.  We went upstairs at 7pm and read the rest of a book we were already reading from the library, and he quickly fell asleep, even with protest that he was too tired to sleep.

I must admit, I was relieved.  I imagined full blown melt downs last night and most of today, but my boy is growing up.  This of course doesn't mean I won't get them tomorrow, or somewhere throughout the rest of the season, but for now things are good.  We will keep things very low key for the next month, hoping to continue this good fortune, but there's too much out there in the world for it not to affect him.  Whatever happens, he is my beautiful son, I love him more than life itself, and will always be proud of the way he manages to cope with this overwhelming, sensory saturated world we live in.  He is my hope, my inspiration, and my heart.

This is the only authorized picture in the bunch

And this is what the tree looked like when we were all done.

Traditions

This is the time of year that I really sit down and think about my family traditions.  I mean, we have some throughout the year, but most are during the holidays.  I also think about how they have changed over the years.  All holidays were spent at The Farm until my grandmother couldn't handle doing it any more.  This actually only happened when her Alzheimer's got to a point where she couldn't cope.  It was heart breaking for me, but the traditions didn't die, they just changed.  After a while they felt almost as good.  We spend Thanksgiving at my aunt Kathy's house.  She and my uncle Cliff make the best Thanksgiving meal around.  (Sadly I can't remember if Grams was better or just as good.)  Christmas was spent alternating between my parents house and my Aunt Patty's.  Then my mother's health got to a point to where we celebrate Christmas at Patty's every year.
Our family Christmas was always everyone on my mother's side of the family gathering on Christmas Eve.  We'd have a big meal,   open presents.  We now do a Yankee swap, as it's too expensive to get everyone something, with the exception of the children still in grade school.  We now plan our Christmas party for some weekend in December that works for the majority of the people that can come.  My son and I spend Christmas eve at my parents home.
As you can see, our traditions are still in tact in some form or another.  However there is another tradition , which is being severely altered and maybe even cancelled this year.  This is our tradition of making pip-a-neir.  What is pip-a-neir you ask?  It is a danish cookie, similar to a molasses cookie, only looks like doggie kibble.  (Yes, I know, this works to my advantage though, I bring it with me and no one wants to try it because they think I'm eating dog food.  Got to love the Danes!)  Ever since I remember I have been making this cookie.  When my Gram was alive and well, we ALWAYS made it the Friday right after Thanksgiving.  We would all (grand kids, and sometimes a few adults) gather at The Farm and work in the kitchen with Gram while listening and singing to Christmas carols.  When my Gram could no longer host this, my aunt Patty was kind enough to host every year since.  It isn't on Fridays anymore though.  But it is usually that first weekend after Thanksgiving.  So I don't feel like it's changed too much. 
I got a call from my aunt today, telling  me my cousin Kate can not be there for pip-a-neir, so we won't be doing it this weekend.  She also didn't know if it would happen at all.  Can I tell you, this is devastating to me.  I know it's only cookies, but it's the holiday tradition that makes me feel closest to Gram.  She was and is one of my 2 true heroes.   She taught me so much in my life.  About life, love, family, tradition, and above all: how to enjoy life.  How to live.....  I miss her every day, I think of her often.  It gets a little harder and sadder around the holidays, but that's ok.  She is in my heart, and will always be there.
These traditions bring me a feeling of peace and of being a little closer to Gram.  So I think I will go to the store and get the ingredients so Will and I can make our own pip-a-neir.  We may not be with the rest of the family, but he and I will carry on that tradition together, and I will remember.....and be grateful.