Way Back Wednesday

Date: March 2009

Michael age 1

Twins: 6 weeks

My grandfather, who had been sick and on hospice for years, died on Michael's 1st birthday.  The twins had just gotten out of the NICU the week before, after Thomas was in for 3 weeks and Eva Rose was in for 2 weeks with RSV.  Eva Rose had been intubated for 6 days and thomas was intubated for 24 hours.    2 of my sisters and I decided to drive to North Carolina with the 3 kids to visit my grandmother who was just admitted to a nursing home after my grandfather died.  My husband and I drove down almost a year earlier when Michael was just 6 weeks old, so I am glad that my grandmother was able to meet the twins when they were the same age as Michael was.  When I think back to driving 24 hours with 2 newborns who had just been released from the hospital and a 1 year old and being 6 weeks post c-section, I think I was crazy.  If I had to do it all again, I don't know that I would have made a different decision.  I am so happy that I have this picture and just wish that my grandfather could have met the twins!

Amy

Newest Doll Project

I have had this old clementine crate for the longest time (probably not that long, it just feels that way) and I finally decided to do something with it.  I had heard that you can make a small doll bed from the crates so that they are recycled and have a new use.  I looked online to get some ideas, but I finally decided to jut use some wide popsicle sticks to make a headboard and a footboard and then paint the whole thing.  I then attempted to make a mattress, but measured wrong and pretty much totally screwed up, but I added a pillow and I think it looks ok.  I love the tufting of the mattress.  I am really liking how creative I am being.  For my own mental health, I think it is important for me to find some sort of creative outlet, plus, it's so much fun making things for the kids! I now need to make a doll quilt for the bed!

I think it may be time to work on some boy projects once I am finished with the doll quilt!!  The poor boys seem to get lost in the shuffle of making cute things.  There are so many cute girly things, I now need to find some cute boyish things!

I also think that I really like sewing!  I'm not a huge fan of sewing clothing (though I would like to learn how to better)!  I love sewing craft things.  I really need to figure out what I like and spend some time perfecting my craft.  Oh, and a Facebook friend from high school mentioned that this bed would be great for small dogs and I should think about selling them for that reason.  It's a great idea!

Happy creating!
Amy

Little Momma

A while ago, I decided to make myself a baby carrier and even though I haven't used it a ton, I love it and I love that I made it.

My daughter in the carrier I made for the kids!

Recently, my daughter started to ask for one for her dolls.  I looked to the internet to find a tutorial (I figured I didn't need a great one since this was just for a doll not a person.  I got a good idea of what I needed to do and I threw together this little piece.  It was fin to make and allowed me to use my sewing machine for a good reason.

Front of carrier

Back of carrier

I was able to use fabric I had but it is certainly a miss mosh of fabrics (not necessarily chosen with much thought other than the chance that I would not be using this fabric for anything else).  She loved it and wore it all morning!

Love getting the chance to sew and be creative!

Amy

Dealing With Autism

It's been about a month and a half since we got confirmation that Michael was indeed on the Autism Spectrum.  It's amazing, that even though we were pretty sure he was on the spectrum, how difficult it is to process the diagnosis of PDD NOS.  There are times that I have these doubts that he actually has PDD, but then something happens and I realize that it is just my denial that he actually has PDD.  I'm not in total denial that he has it, I guess at times, I hope that he does't have it, but in reality I know he does.

One of the things that makes it so difficult to fully accept (or at least I think that this is one thing) is that people (family and friends) want to deny that he has it and when we tell them that he has this diagnosis, they say that they don't believe he has it.  I know that they mean well, but it just fosters that doubt in my own mind.

He was just evaluated for sensory issues, and the occupational therapist that saw him felt that some of the sensory seeking behaviors that he has are ways that he has developed to help him when he is over stimulated.  This is another area where people say things like: all 4 year olds do that or that's normal behavior.  I think on some level what Michael does is normal behavior, except that how often he does it and when and why he does it, is not normal developmental behavior.  On the other hand, if his behaviors are his coping mechanism for overstimulation, I am pretty impressed with his ability to figure out what he needs to decompress.  I think at this point, we need to find ways to help him so that he doesn't need to seek out these regulating behaviors.

We are going to see OT for 3-5 sessions to help figure out a "sensory diet" to see if that will help him not need to seek out things to decrease him stimulation, or at least help him not to get over stimulated on a regular basis.  I'm sure that there are going to be times where he will still get overstimulated, but if we can help to decrease these times, maybe he will feel better.

It was amazing to watch him after his evaluation.  It kind of brought home, once again, that there really is an issue.  At the end of the evaluation, when my husband and I were getting the results, Michael started doing his water play.  He started at the sink, then he started leaving the OT room and repeatedly going back and forth between the OT room and the water fountain in the waiting room.  The other 2 kids, who had been there as long waiting for Michael's evaluation to be finished, were playing in a more "normal" or "appropriate" way, such as playing with the different toys in the room.  When Michael gets like this, it can be difficult to distract him and get him to focus on something else.

Michael is still my sweet lovable boy and all of his evaluations start with a similar description.  All I want for him is to be happy.  I want him to have a happy, fun, good life.  I think with the appropriate interventions, he will do fine.  I think he may always have some "quirkiness" to him, but I think he will be fine.

I'm not sure that this is totally clear.  I guess, I am still processing everything that we have just learned and I know that there are still things that we need to learn.  If anyone has any thoughts that they want to share or stories that they want to share, please do.  I know that I am going to more than likely start looking for a support group to talk to others who either are in the situation that we are, or who have already been there!

Amy

End Of School

There is one more week to the school year.  One more week for Michael and one more week for my husband.  I am hoping that we can enjoy the summer and then I can find a job for September.  Ultimately, I would love to find a job doing something I love, but the likely hood of that is probably slim to none.  I still keep my hopes up though.

Michael will have a couple of weeks off and then head back for summer school for the month of July.  He will go four days a week for four hours each day.  He did this last summer and I think it really helped him to maintain what he learned through the school year.  My daughter, on the other hand, finishes speech therapy for the school year in 1 week.  She will not be having summer sessions and I am a little concerned about her backsliding, but her speech therapist said that she would give me some things to work on with my daughter over the summer.

Before Michael heads back to school, he will have an OT eval for sensory issues.  Not that I want him to have issues or another diagnosis, if he gets a diagnosis or at least if OT sees issues, maybe we can get some suggestions on how to handle certain things, like going to sleep, poop training, almost obsessive water and sand/dirt play and maybe others.

I know that there are other things to put in place, but for right now, this is what we have.  We are following a more gluten and dairy free diet, which I think makes a huge difference.  Thankfully once Michael is asleep now, he is pretty much asleep except for maybe a short waking for a pee time or request for water and he goes right back to sleep (instead f the multiple waking times that went on for over an hour at a time!

I am hoping to spend a lot of family time this summer.  I hope we can do a lot of day trips as well as just enjoying time near home and at home.  We have an open invitation to swim in a neighbors pool.  I am hopeful that Michael will really enjoy being in the water and learning how to swim.  We will hopefully plant our garden this weekend and we will need to spend some time taking care of the garden.

Thank you to everyone who reads what I write.  It does help to write things down, especially when I know that people are reading.  Thank you for commenting too.  It means so much to me when people take the time to make a comment on things that I write.  I plan to continue to write when I can and let go of worrying if people are reading or not.

Amy

Michael's Diagnosis (long post)

Yesterday, we went to get the results of Michael's testing.  He was tested by a pediatric nuerologist at the Lurie Center.  My husband and I have always had an inkling that there was some issue, but we were never quite sure if there really was an issue or if we  were just over reacting (or at leas that was how I felt).  We had an abnormal AFP test when I was pregnant with Michael, but the ultrasound looked fine so we never went further.  I came down with pre-eclampsia when I was 32 weeks pregnant and ended up in the hospital for a week and on bed rest for the rest of my pregnancy until I was induced at 38 weeks.  I went into labor and Michael got stuck and I ended up with a c-section and on magnesium sulfate.  When I tried to breast feed, he always had a hard time latching.  While I was still in the hospital, the lactation consultant noted that he had a little difficult time sucking and we had to stimulate the roof of his mouth to get him to suck.  While I attempted to exclusively breast feed, Michael wasn't gaining the weight that he needed to and we needed to supplement with formula, as well as attempting to get him to latch on and pumping.  When Michael, 3 months, I became pregnant with my twins and stopped breast feeding all together.

At that point, he was doing fine with bottles and maintaining his growth curve.  He was developing on time with most of his milestones, except for speech.  We finally got an EI evaluation for all 3 kids when Michael was 2 1/2 and the twins were just over 1 1/2.  Michael was in EI for 6 months and then transitioned to the public school system with and IEP.

Michael was in a 1/2 day program for 2 1/2 hours, and after 2 months or so, we had another meeting and it was recommended that he go into a full day  preschool program.  He has been in the full program for about a year now.  He has a wonderful teacher and wonderful para-professionals that care so much about him as well as his speech therapists.  He has done so well with this program, but I still had concerns.

My husband and I decided to move forward with an evaluation, hoping to get our questions about developmental delays vs normal development just a little behind schedule.  Michael was evaluated a week ago and there was some question about whether or not he fit the criteria for an autism spectrum diagnosis. Yesterday we returned to go over the results and the doctor decided that he really did fit the criteria, more specifically PDD NOS.  I guess he would be considered more of a child with Asperger's , but he had an early onset speech delay.  He is high functioning, but has impairment in his social skills.  There is more to it than that, but at this point, his sensory needs and his social functioning seem to be the biggest areas of concern.  The doctor mentioned that he most likely would have been a child that may have fallen through the cracks if he hadn't been diagnosed early.  He is a wonderfully charming child with a great personality. Most likely, as he got older, he would have been considered a "quirky" kid.

As much as I hate having him have a diagnosis, I am happy that we know that there is an issue and that we are able to do something about it.  With a diagnosis, there is a lot more open to us for resources.  The doctor is hopeful that with supports and diet, he may grow out of it and lose the diagnosis as he gets older.    At this point, I plan to be much more vigilant with his diet, as it seems to help him.  I'm not going to be super Nazi about it at parties, but I am going to be more vigilant at home!

As much as I know people don't really comment, I do know that people do read this blog.  I hope that if you read this, you will keep us all in your thoughts and prayers and maybe post a comment if you can.  For me, comments mean a lot and are really helpful, even just knowing someone has taken the time to read what I wrote and not just hoping that someone is reading.

Thanks,
Amy

Michael Update

Michael had his cyst removed.  For a while, he had this little lump that we were told could be this big long word.  It was removed about a week ago and we are on our way to his chin healing.  After the surgery was complete, the doctor said that it wasn't what he thought it was, but that it was either a cyst or a lymph node (i didn't know that you had lymph nodes in your chin).  We go for a follow up in about a week and a half and will find out the biopsy of the cyst.

In a week and a half we are also taking Michael for his developmental evaluation.  I have been really concerned about his lack of meeting certain milestones or his lack of communicating.  According to his preschool teachers, he is progressing, but not as fast as they would like to see.  He has been in a a 5 hour preschool program for a year now and is still not really able to talk to us about his day.  Luckily his teacher sends home a little check off on the things that happen during the day so that I can ask him about it.  With lots of prodding he is able to maybe at least acknowledge that he has down certain things at school.  Unlike his younger brother (by 10 1/2 months), Michael can not really communicate about his day even with simple cuing.  I have noticed though, that he is improving over that last couple of weeks.  Before, when you asked him who his teacher was, he would say teacher, now he can say her name and then just this morning, I asked him who was in his class and he actually named the kids without a lot of prodding.  He still likes to play alone and doesn't really even play along side other kids.  His imaginary play is starting, but is still pretty limited.

The one area that he actually excels in is music.  He loves music and can sing many songs.  He was able to sing songs before he could really say a whole lot.  I love listening and watching him sing.  His whole face lights up and you really now that he loves music.

One thing that I do think has helped is his diet.  He has shown to be sensitive to  gluten and dairy.  ever since we have removed these or at least lessened them greatly in his diet, he has been improving.  He is more aware and more vocal.  He sleeps better and doesn't seem to have the skin issue that he was having, especially when he was eating and drinking dairy.

I am looking forward to his developmental evaluation.  Part of me says that he doesn't need it, but another part of me says don't be stupid.  He is four years old and he should be communicating more than he is and he should be playing more with others or at least along side others rather than always wanting to play by himself.  He does well with his brother and sister, but really needs to start playing with other kids.

One other major area that he has greatly improved in is in his behavior.  His impulsivity is much improved.  Before, if you reprimanded him, he would throw something.  Usually this was regarding asking him to put soothing down.  Instead of putting it down, he would throw it and sometimes it was something very fragile.  I do think that you need to talk to him in a certain way, but he is so much better.

I can't wait to either find out that there is no real issue and we don't need to worry, or find out that there is an issue and then we work on helping him with whatever issue he has.  I really just need to know where to go with him and know if I am worrying needlessly or if my instincts were right and I need to do more!

Amy