Category Archives: deep thoughts by erin

Things are CRAAAZZZY up in here.  Life is so busy, it just seems to be one thing or another that is consuming my moments.  And then at night when I try to fall asleep it starts to hit me how fast it is all going by.  Sade grew a whole size in shoes since school started, Drew talks non-stop and Ethan is not far behind Sade when it comes to growing.  I keep telling them to slow down and to stop growing so dang fast but they don’t listen.  I love watching them grow and learn and even fail sometimes.  But I hate seeing them get a little older all the time and a little closer to leaving me.  It really is just a blink of the eye and I find myself wishing for time to slow so I can savor these moments a little longer.

Sade told me not long ago that he never wanted to grow up, he loved being a kid and didn’t want any responsibility.  It made me smile, how wise he is.  He is doing wonderfully.  At the beginning of the school year he was placed in a classroom that would have been destructive to his learning process.  We had him switched the first week and the difference is astounding.  He has graduated occupational therapy for good.  His handwriting is better than half his class.  He still struggles with small things like tying his shoes, but coming from a kid who couldn’t hold a fork, I am pleased.  He is trying so hard, he is still about a year behind educationally from where he should be, but we have an awesome team working with him and he is putting forth a great effort.  I am learning to be hyper organized because it helps not only him but everyone in our family.  I can’t seem to keep pants on him though, he’s either ripping out the knees or growing so fast that they become flood pants.  He brightens my day, knowing that when I wake up he will already be awake, usually dinking around on the computer and practicing his spelling words.

Then there is Ethan.  I worry about him sometimes.  He is my classic middle child.  He has always been my easy one and the one that loves me the most.  I used to say that no one has ever loved me like Ethan, the one who told me he planned to marry me when he grew up.  I try to remind him often of just how much I need him, despite that the older he gets the less he needs me.  He is creative and sensitive, he has this compassion about him that I envy.  He is doing well in school, better than average and Mr. Popular, especially with the girls, but he will get mad if you mention that part to him.  I can always count on him to make smile or know when I need a hug.  I love that he loves to read too, a child after my own heart; and now he is asking me to teach him to knit.

And Boo.  He never fails to make me laugh, that kid has amazing comedic timing.  I get to spend my days with just him and me.  We go on adventures together, we paint, we color, he helps me put away laundry.  He is mine right now.  I love that he nicknamed himself Boo and tells everyone that he is free and a half.  I sing to him at bedtime and I changed the words from Hey Jude to Hey Boo, and now he wants me to sing it all the time or play The Beatles version over and over and over again.  He has an imaginary friend, Charley, who he talks on the phone to all the time.  I’m impressed by his imagination and find myself just watching him play at times.

This got to be a little sappier than I meant it to be.  I guess my point is that even though life doesn’t slow down, I can.  There will always be that goal Stewart and I are working towards.  Right now it’s him finally graduating with his BS (a year to go), and then it’s breaking into the tech world, and then finding the right job in the right place.  It’s just so important to not get lost in the future and to live for now because soon, sooner than I think, they will be leaving for college or marriage or life and I don’t want to regret not spending time with them.

I don’t know why, I just feel it is time to tell this story.  Blogs are self promoting places and since this is my place, this is the place I feel safest sharing this.

Sade: He was born in the winter of 2000.  My first born.  He came into this world perfect, 10 fingers, 10 toes and a head full of hair.  He was such a cute little guy and looked like a little old man.  It was love at first sight.  It wasn’t long after we brought him home that the colic started, every night for 3-4 hours he would cry, nothing helped.  I remember Stewart being at work (he worked nights and loooooong hours, thank you military) and just rocking him, crying right along with him.  We bonded during that time, I felt such a closeness with him, the colic was difficult to get through but he was such a sweet little baby it didn’t matter.

He was always an independent baby, I joke now that if I hadn’t breastfed him I would have never gotten to hold him.  He was also very stiff, we used to have to bend him to get him to sit down or put him in his carseat, he was in a constant state of erectness.   As he got a little older little things started to stand out.  When he would play he didn’t play like other children, instead he would line things up by size and color and if you messed up his line of cars or sippy cups there was hell to be paid.

It was around the age of two that my mommy sensors started to ping.  I would take him to playgroups and feel jealous because there were children younger than him that could speak better, and seemed so advanced compared to him.  I actually made an appointment with a psychologist to voice my concerns, I was told kids develop differently and to not worry about it, he was fine.  But I wasn’t completely convinced, this was a toddler that would figure out the child locks and escape, would push out the screen and climb on the roof, that if you let him loose in a store would run off never to be found again.  He once got loose in the commissary and they had to close it while the whole store searched for him, we found him hiding on a shelf in the bread isle.  But, the doctor said he was fine so I pushed my worries and concern to the back of my head and started to think there was more wrong with me as a parent.

Fast forward a little, we welcomed Ethan into the world and then moved to California.  Not much changed, his vocabulary was still off.  He could identify every dinosaur in his dinosaur encyclopaedia but could not ask for juice.  He could do a difficult maze without issue but couldn’t hold a fork.  It was then that a friend of mine, someone I admired and looked up to greatly, pulled me aside and told me that he needed to be evaluated.  I was relived to know that the issues weren’t just in my head.  She gave me some numbers to call and we got the ball rolling. He started speech therapy a couple of months later.

During this time it was kind of weird, they tested and evaluated him.  I watched my younger son Ethan’s vocabulary surpass that of my older sons.  Ethan understood and learned yes and no before Sade did, it was weird for lack of another word.  We were later told by one of Sade’s therapists that having Ethan was the best thing we could have ever done for Sade because it gave him a peer to learn with.  After several months of testing and therapy we had a big meeting.  In this meeting they gave me tons of information on something called Pervasive developmental disorder.  I had never heard of it, I had no idea what it was and said so.  The speech therapist quietly said “its autism”.  Immediately I got defensive, it can’t be, he’s social, everyone is his friend, he can make eye contact, he was my little boy and there couldn’t be anything seriously wrong with him there just couldn’t!

I took the paperwork she gave me and went to the library, I checked out books and googled my little heart out.  I quickly learned and realized that it described me son really well.  I set up an appointment with our pediatrician.  That was a funny meeting, he looked at Sade, said “he just made eye contact so it can’t be autism”.  I gave him some of the reading material the school had given me, he looked over it and admitted he knew almost nothing about autism and sent us to UCLA.

UCLA: It took us nearly 9 months from the time we made an appointment to get seen.  During this time he continued therapy at the school for speech and adding on social skills and occupational therapy.  Our first appointment was about 2 hours.  My mind is kind of foggy about that appointment, I remember on the way home Ethan being very sick and it turning out to be pneumonia, I think I blocked out that day because it was so stressful.  What I remember though was taking him into a room and us watching from another while they played with him talked to him and then did some other tests.  Then we went home and came back again 2 months later.  They did a little more testing the second time and then came back again 6 weeks later.

The last appointment, we go into a little room and they sit us down.  The doctor looks at us and says “you guys already know right?  You aren’t going to be surprised when I tell you he is definitely on the spectrum?”  She then hands us a 17 page diagnosis outlining his disorder.

It was then that it all became real.  I had two very conflicting emotions, the first was relief, I wasn’t a horrible parent that couldn’t “control” my child, I wasn’t a failure like I had thought, there was something different about him that made him behave in curious ways. And two, I grieved, I got this diagnosis and I realized that my dreams for him had changed.  No longer was it when my son gets married, but if he gets married.  Not when my son graduates from college, but if he will graduate from high school like other kids.  I realized my son would never be the president or a number of other things that I had always hoped for, my dreams for him were gone.  I read this poem called Welcome to Holland over and over again reminding myself it was all alright, that things weren’t bad, just different.

Sade at this time was 3 and a half almost 4.  He had meltdowns that would last for hours on end.  He would injure himself yet seemed indifferent to pain, he even broke his own arm during a meltdown. He barely slept, we used to have to drive for an hour nightly to get him to sleep only to have him up at 3 or 4 in the morning after not going to sleep until midnight. I learned how much patience I really had and it was tested over and over again.  There were times I would shut him in his room to avoid him hurting himself or anyone else and then just sit by his door crying.  I spent a lot of time of my knees praying for help and guidance just trying to get through a moment.  His communication was improving though.  I still remember the first time he told me he loved me, he was 4 and a half and it was after I tucked him in and told him I loved him and he said it back.  I remember looking in his eyes and knowing he understood and meant what he said.  That moment made every difficult moment vanish, it made everything, the tantrums, the painting the walls with poo, everything worth it.

We were in Florida about this time and I honestly cannot say enough good about the school we had there.  Our IEP meetings could last 2 hours because they were so thorough trying to make sure he had everything he needed to succeed.  He had a tutor that would follow him around and help him in anyway he needed.  They placed him in an inclusion class because like most kids on the spectrum he was a mimicker and we hoped he would mimic the other children in his class.

It was in Florida that I watched him blossom.  He seemed to grow so quickly and learned quickly as well.  We had set backs though.  He had panic attacks over things and ended up on medication for them.  He still had a temper and once called 911 to tell on his dad because he lost his Nintendo DS (we still get a giggle out of that).  His social skills were still lacking, we would have play dates and he would play for a little while and then go and play by himself.  He still does this actually.  He would have sensory overload often and would meltdown.  Water is one thing that has always calmed him down and living 5 minutes from the beach was an amazing thing for him.  One of the big milestones came in Florida.  Ethan was around 3 putting Sade at 5 and was throwing a tantrum over not being able to have another Popsicle (the horror).  He had thrown a massive tantrum that lasted for a long time.  I got busy doing house work and noticed he had calmed down, I went and checked on him and Sade had gotten a Popsicle for him.  At first I was upset, I had just spent way too long listening to a tantrum over the damn thing and he had undone it all, but then it clicked Sade had shown empathy, something he had never done before and he did it naturally.  It was an amazing feeling of soberness that I won’t ever forget.

While in Florida we had our third boy Drew.  It was funny watching Sade interact with Drew.  I brought home this little baby and Ethan was so snuggly with him, holding him, rubbing his head when he cried, Sade was awkward.  He would poke at him or pinch his cheeks, he didn’t know how to react to a baby we had to teach him something that should have come naturally.  He did learn though and now is quite good with him.

When he was 8 we left the military and moved to Utah.  Sadly the schools here weren’t like the one we had in Florida.  They immediately took him off his extra therapies and I watched him slowly fall behind.  We moved again and into a better district, they put him back on his therapies but he still has some catching up to do, he seemed to lose a year during that time, I’m still a little bitter about it.

It’s been really cool to see the kind of person he has become.  He is 10 and a half now.  Long gone are the meltdowns and injuring himself.  Now we get back talking and obsessing (the back talking I realize, is completely normal).  If we tell him no on something he will pester you about it for weeks, constantly, obsessing over something asking you about it over 200 times a day, no exaggerating there.  An example of his obsessing is when he learned about dust mites in school, he was terrified of his bed and we kept finding him asleep in the bathtub because he was so scared of them.  Buying a dust mite mattress protector helped thank heavens.  Puberty scares me, a lot, I’ll cross that bridge when I get there.  He has a great personality and a quirky sense of humor.  People after learning he has aspergers remark that he seems fine.  And he does, most of the time.  We call him the poster child for early intervention.  There are many times when I forget he even has aspergers but then he does something that reminds me again.  He has overcome so much to get where he is now, he has worked his little behind off to be who he is and I cannot be more proud of him.

He knows he has apsergergs, we told him about a year ago when he started to notice he was different.  Now he’s actually pretty proud of it.  When the girl from Florida was lost in the woods a few months he watched the news obsessively and kept saying how she was like him.  He knows things other kids don’t.  He knows about the weather, sea-life and dinosaurs.  He won’t read fiction unless forced to for a book report.  He loves facts and information.

There are little things that remind me, like that he will only let me kiss him on the cheek for bedtime.  He has set forth rules about his personal space.  I don’t cross over into his space, I let him make the move, this is what he has asked me to do.  And really, its okay because we will be walking in the store and he will hold me hand or sit next to me on the couch or just tell me one day that I’m the best mom ever.  I’ve learned to make it work, affection on his terms and honestly it means more to me when it happens.  Lately he is a lot more forth coming with affection, hugging relatives and holding hands, it warms my heart.  We have ups and downs, peaks and valleys.  Aspergers is a roller-coaster, one moment you are on the top looking down anticipating the thrill and then suddenly you at the bottom wondering how you got there and how you can get back up again.

It is a journey we have been on and not even close to complete.  It does seem to get easier or maybe we are just more comfortable with it all.  I’ve been asked if I would cure him if I could and I can’t really answer that.  I honestly don’t know where the Aspergers begins and my child ends.  I love his quirkiness, and his vast knowledge of all things Star Wars, dinosaurs and the weather.  I look forward to the journey he has ahead of him.  At times it seems he has to work twice as hard to get half as far as other kids his age, but he puts forth the effort and amazes me at the things he can accomplish.  I hope that I can help others that are on this journey, that some how our experience can be an inspiration to others.  If any of my 12 readers ever need an ear or advice I will do my best to help because we are in this together and without support we won’t make it.

Side note: I realize Sade doesn’t have typical Aspergers he is more PDD-NOS but for ease of explanation and his level of being very high functioning, both us and his psychiatrist consider it aspergers.  Also I realize I am probably missing many important parts to this story but its getting long, I may add to it later.