A Glimpse of Real Life

I don’t think many people really understand the cycles of grief that come with raising a special needs child unless they themselves have lived it.  It is a strange thing.  It comes and goes in spurts and often rears its head in very unexpected moments.  These past couple weeks it has hit me hard again.  Our family is extremely blessed to have Matt-man in it, and I wouldn’t trade him for the world.  He is a source of much joy and laughter in our home, but right now I just need a place to vent a little about some of the struggles we are going through.  

I hate what autism and 15q24 have taken from Matt.  He has to work so much harder than any of his peers or siblings to learn the simplest tasks of life, and there are some things that he may never master.  I don’t want to sound like I’ve given up or lost hope, because I haven’t, but the reality of how severely delayed Matt-man really is has finally started to sink in.  Yes, he is continually making small steps in his development, but the disparity between him and other kids his age continues to get greater and greater as he grows older.  This is really difficult to swallow.  

My 7 year old, Nathan, and 2 year old, Audrey, play and talk together all day.  They sometimes try to involve Matt, but he just doesn’t understand how to participate without a lot of prompting and assistance from me or Danny.  The way his siblings play just doesn’t seem to make sense to him.  They engage in quite a bit of play that requires a very active imagination.  For example, tonight they were making a special stew for worms using grass, sticks, leaves, acorns, garden herbs, etc.  I don’t think Matt had a clue what they were doing.  He was happy to roll a truck back and forth for an hour.  That is the kind of play that makes sense to him.  There are other times where I think he would participate if he could, but his fine motor skills prevent him from doing so.  Nathan and Audrey spend a lot of time building legos.  Trying to manipulate legos is very difficult and frustrating for Matt-man.  He would prefer to be off by himself doing something that makes sense to him – like rolling cars back and forth or hanging upside down off of the couch.

He can carry on very basic conversations about his immediate needs and wants, but there is very little meaningful conversation beyond that.  He couldn’t tell you his favorite color or favorite food.  He has a difficult time answering the question “what did you do today?” because he still doesn’t understand the abstract concept of time.  Words like today, tomorrow, yesterday, this week, next week, etc., are just that…. words.  They don’t seem to hold any real meaning to him.  He is smart enough to know that a question was asked so he responds with one of his memorized sentences, which may or may not make sense in the current context.

One of the biggest things we are struggling with right now is that he has started having crying spells.  Now by crying spells I don’t mean a little tantrum; I mean he cries hard for at least an hour until he is physically worn out and cannot be comforted.  Throughout the crying spell he will periodically start laughing his head off for no apparent reason and then go back to crying.  All we can guess is that some point in the tantrum he must decide that the sound or sensation of crying is funny in some way. Sometimes there is an obvious trigger to the crying spell, but many times he starts crying for apparently no reason and we can’t figure out for the life of us why.

The other big struggle we are having with Matt-man is the constant fear of elopement.  When he is not at school, we have to watch him pretty much every second of the day for fear that he will take off on his own. I do not think this is an intentional desire to “run away” per se.  I think it is a matter of wanting to explore the world and being completely oblivious to the things around him as he does.  He has learned how to unlock our front door handle and deadbolt, but that door is pretty loud so we have learned to very quickly check the door if we hear it open.  The back door opens into a fenced in yard with a padlock on the gate, so I am less worried about him sneaking out the back.  Honestly, it is much more difficult when we are at a friend or family member’s home.  Instead of just relaxing with friends/family, we spend the entire time stressing out about our child getting away unnoticed.  Church dinners are just awful for this same reason.  They are usually held in the gymnasium, which has multiple emergency exits.  If I take my eyes off of him for a minute, he often has disappeared.  He has gotten out of the building unnoticed more than once, which is very scary considering the church is on the corner of 2 fairly busy streets.  I worry less about my 2 year old because she has a healthy fear of the unknown and always returns to mom or dad or cries for assistance.

Matt-man is only 5, so I honestly have no idea what life still has in store for us.  He could make some unimaginable gains with continued therapy and blow all of us away.  I really hope this is the case, but I am preparing myself for the very real possibility that Matt-man will always need to be in the care of his family.  Nathan recognized this a long time ago and has said for a while now that his brother will live with him when they are grownups.  

Please keep us in your continued prayers.  We really do covet them.  We are doing the best we can with God’s help, to raise all of our children right, but this is done with a lot of stress, exhaustion, and the guilt that we aren’t doing enough.  I am thankful for the little bits of encouragement that come along just when we need them.  Just this week my oldest son, Nathan, prayed and thanked God that we have such a happy life.  We must be doing something right.

Musings from Mom on Mother's Day Weekend

Life has been clipping along at a pretty steady pace lately.  We've fallen into the routine of 25 hrs of ABA therapy plus an hour of speech and OT every week.  Matt is making slow steady progress.  He occasionally has his setbacks, but overall he is doing amazing.

One of the biggest life changers for us has been that we no longer have to clean up his poop and pee multiple times every single day.  Forcing him to wear underwear and use the toilet is finally paying off. He still needs prompts to remind him to go, but he is so close to being completely potty-trained at last!  I can't even begin to express how proud I am of my little guy for this major accomplishment.  Many of the children with his syndrome really struggle with toilet training.

Growth Hormone therapy has been one of the best decisions we ever made on Matt's behalf.  He turned from a sluggish child to an energetic one literally overnight.  This has carried over into his response to therapy as well.  He is able to focus better and for longer periods of time.  When I get home from work he actually runs to meet me at the door and hug me.  I had resigned myself to the fact that I would probably never get that type of a greeting from Matt-man.  My heart overflows with joy and thankfulness each time I see him running to me with open arms.  What an incredible blessing to this mother's heart.  It has taken 4 1/2 years.  He is also physically growing taller from the Growth Hormone.  He grew as much in the past 3 months as he had grown in the entire year previously!  It is a huge relief to see his growth curve turn around.  He is not fazed by the daily shots, and non-medical dad has taken on the responsibility of giving him his injections every other week.  I'm proud of them both.

We are tossing around the possibility of integrating Matt-man into a typical preschool part-time this fall to prepare him for kindergarten next year.  If we do, he will have one of his behavioral therapists with him to guide him.  I hope this will work out.  I'd love to see him integrating more with neurotypical children.

Speaking of integration, Matt-man is on his first ever tee-ball team!!  He is on a team with his 6 year old brother, Nate, and many of Nate's classmates.  They are all very protective of Matt-man and extremely helpful.  He has a lot of difficulty with the mechanics of fielding, throwing, and hitting the ball, but that kid sure loves to run the bases.  He has a look of pure joy whenever he gets to run with his very unique gait.  I think it puts a smile on everyone's face to see him running with all of his might and a grin on his face!

The biggest thing on my mind this weekend in regards to Matt-man is that he is happy.  He works so much harder than the rest of us just to do the activities of daily life which causes some frustration, but for the most part he is smiling and giggling as he goes through his day.  He loves his brother and sister more than anything else in the world.  He loves to sing and bang on the piano.  He loves his sign language videos.  He loves our chronically misbehaving beagle, Lucy.  He adores a good dirt pile full of dump trucks.  He doesn't seem to worry at all about what others think about him.  He loves to wrestle with dad and get tickled to pieces.  He begs daily for a "nice, warm bath" with his siblings before bed.  Perhaps my favorite thing about him is that he loves to curl up on my lap and read book after book after book.

I wish life was easier for Matt-man and that he didn't have some of the medical issues (such as the growth hormone deficiency, recurrent ear infections, hypotonia, feeding difficulties) and sensory processing issues that come with his syndrome, but I am conflicted on whether I would ever want him to be fully "cured".  So many of the things that we have come to love about him are intrinsically tied in with the 15q24 microdeletion syndrome.  He just wouldn't be our same little Matt-man without these traits.

Pray that he would continue to improve on his toileting and communication skills and his other activities of daily living; pray that God would continue to give us patience and understanding as we deal with all of our children each day; and pray that God would continue to use Matt-man to make a positive difference in the lives of all of those around him in his own unique way.

Matt-man, age 4 1/2 yrs

Emotions

It really is remarkable how many conflicting emotions we have experienced over Matt's diagnosis.  For me it started with denial followed by deep grief over the loss of what MY hopes and dreams were for my child.  I worried that he would always be stuck in his own world and never have deep meaningful relationships with others outside of his own family.  This was mingled in with fear - will he ever be able to live independently?  I have so much uncertainty about what the future holds for him or our family.  Mingled in with these emotions was a deep sense of relief that we finally knew what was going on with our child and could understand him a little better, and help him be the best that he can be with what therapy is available at this point in time.

I am at the point now where I have accepted the diagnosis and have discovered a lot of joy in being able to relate to my son a whole lot better than I was before when I expected him to be "normal".  I am much more sensitive to his subtle cues than I ever was before.  We do have a lot of very hard days.  Days when he cries a huge portion of the day and can't tell us why in spite of our best efforts to break through to him.   Days when he hums or sings to himself all day and gives us zero eye contact.  Then suddenly, something will strike him as funny and his blue eyes look deep into mine and his whole face lights up in the most beautiful smile.  I love catching these glimpses into his world.  There is so much more to Matt than he lets on. 

Those who know me well, know that I am not prone to outward displays of emotion - Matt gets some of his introverted nature honestly - but sometimes I am caught off guard by somebody who is particularly kind and caring in their question of "how are you doing, really?"  These are the moments that I want to break down and cry right there.  I can't summarize all of my emotions, but the fact that they truly cared and wanted to know is enough to make my day.

My husband, Danny, is not prone to outward displays of emotion either.  I've known him for 10 years and can count on one hand the number of times I've seen him cry.  He is absolutely right in his statement that the label of autism doesn't change who Matt is, and it just helps us know what to do to help him.  Even he has been affected by some unexpected cycles of emotion though.  It hit him in the sports aisle at our local department store that Matt may never be able to play a game of catch with him.  That was when the tears came for him.

My son, Nathan, is 5 years old and has had a rough time figuring this all out.  We tried to explain what autism was to him, but it's difficult to explain to a 5 year old.  We told him that Matt's brain works a little differently, that he's a smart kid, but he just has a hard time with a lot of things that come easy to the rest of us.  At first Nathan thought that autism was contagious - he didn't want to sleep in their shared bedroom for fear that he would catch it.  He also wanted to know if you could die from autism.  This was heartbreaking to hear, but I gently explained to Nathan that autism is something you are born with, that is just means your brain works a little differently, and that no, people do not die of autism.  In a typical kid-like fashion, he rebounded from these emotions within minutes and was fine sharing a room with his brother again.

I've found him to be a lot more patient and protective of Matt than he used to be.  He also has a lot of pride in his voice when I hear him tell other kids that "my brother has autism, his brain works different".  One thing that really seems to have helped him is enrolling him as a "peer buddy" in the autism school that Matt is attending.  He is interacting with kids his own age with mild to severe autism, and seems to be a little better at understanding that different is okay.  He has one buddy at school who runs up to hug him whenever he sees him, and I've seen them walking hand in hand at school.  I really think Nathan is already an awesome brother to Matt and will only get better.  He actually fights more with his 7 month old precocious baby sister than he does with Matt!

Audrey will grow up accepting autism as a part of daily life; she won't know any different.  At 7 mos old she is always crawling over to Matt and joining him in whatever he is playing with.  I actually think it has been great for Matt to have a baby sister.  She clearly loves him, and it is much harder for him to retreat into his own world and perseverate on a task when baby sister is crawling all over him and stealing his toys.  He seems to have a very soft spot for her already.

There will be a lot of ups and downs with autism, but this happens with parenting anyway.  Right now the difficult days seem to outweigh the really good days, but I am confident that as we grow in our role as parents and as Matt gets the therapy he needs, that the balance will shift.  I feel incredibly blessed with the family I have been given and would not trade any one of my kids for the world!