It's just not fair

Yesterday was a long day. We picked up Daniel early from school and took him to Seattle Children's Hospital to see THE doctor again. We were checking in with the doctor, not because of anything new, but because we just needed to follow-up and discuss a few things with him.

Daniel is able to make friends anywhere he goes, so naturally he was saying hello to everyone who walked past him. Some stopped to say hello to him as well. He was very interested in seeing the doctor and kept saying his name over and over. We had the appointment at 2pm, but arrived early and sat in the waiting room for about a half hour. The doctor was prompt and was very interested in Daniel's teeth. Daniel has recently lost a lot of his top teeth and the doctor was struck at just how small his teeth are. The doctor (since he is a geneticist as well) said that there are thousands of genetic syndromes, but only a handful that cause dental problems. He also went on to look at Daniel's face in general which has always had some unique parts to it. Under his eyes it is sunken in a bit, his nose has a tip that goes under and it is flat from the nose to the mouth. His earlobes are almost non-existent. All of these things can be or may be involved in an underlying genetic syndrome though the question is what one. The doctor spent some time researching while in the exam room. He then explained that Daniel had dyspraxia which explains why Daniel can lay down and move his legs with no problem but gets up and cannot walk well. We asked about Daniel's head shake that he has always had and he attributes that to posturing. We discussed Daniel's future as we had last time and he was giving us a bleak outlook on how long we could potentially care for Daniel before we start to get too old.

After he left, he came back rather quickly with a colleague who had a few suggestions. He wanted to see if Daniel's penis was small (which it is). This guy had a New Zealand accent so just try to picture a guy saying that in that kind of accent. Our doctor and the other doctor were talking about what other genetic tests to run and what types of syndromes that may be indicated. Finally both doctors were finished. Then Daniel needed to get his picture taken (his face and his genitals). Then it was time for blood work. We went to the lab and waited another 20 minutes or so. Daniel actually did really well for getting his blood taken. Then we left. We left at 4:30pm.

When we got home, Jason was walking Daniel up the stairs and Daniel took an added step and leaned back causing both Jason and Daniel to fall down the stairs. Daniel got a bump on his head and Jason and I both added many gray hairs to our heads. It was definitely not a good end to a long afternoon.

Last night, feeling sorry for ourselves, Jason was trying to figure out where we need to move that has the best care for adults with developmental delays. He was also upset at our financial situation which really hasn't gotten much better and we were both just thinking, it is just not fair.

Learning More Everyday

It is no secret that Daniel is developmentally delayed in all areas. He is physically delayed and speech and of course mental delays as well. It has been a while since he has been tested, but the last time it was, there was a marked point in which he is more than "2 standard deviations below." That is (of course) IEP speak for your son is mentally challenged. Of course, it was worded differently in the IEP (a bit harsh for my taste). All of this is on the standard scoring--measuring Daniel up to his peers, where he will always lag behind. It does not take into account Daniel's own bell curve and his own unique learning that happens subtly and in such small amount that sometimes you don't know it until it hits you in the face!

Daniel started school on September 2nd and he gets a ride to and from school. The ride is about 10 minutes long and his driver is a nice man from Ethiopia. After just a few days he and his driver had already hit it off with his driver calling him, "Danny-boy," "Sweetie-boy." Everyone loves Daniel. I think his driver figured out early on too that Daniel responds really well to music and singing. So, before the month of September was over, we heard Daniel singing something but we could not figure out. It wasn't in English. We listened for a bit and finally realized it was the Ethiopian National Anthem. Daniel was singing it! Daniel has also learned to count to 5 in Amharic as well.

Now, if someone wants to categorize Daniel in some way as to say that he is not smart, then I will point them to this video and ask if they can count to 5 in Amharic. And to Daniel we just ask, "Why are you so smart!"

Wonder

I have been reading the book Wonder with our daughter. If you have a child in the middle school/5th or 6th grade age range then I do recommend it. The book starts with a quote from a song that I haven't heard in a long while but struck me as not only relevant to the book but to Daniel as well. I played it the other day and then looked up the lyrics and found that they are very much relevant to having a child with special needs. I wonder if Natalie Merchant had a child with special needs or a sibling with special needs but it really speaks to me as a parent of a special needs child:

"Wonder"

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

It's been a difficult few months dealing with many many things around here. Daniel is expressing much of what he doesn't like, but does not always back that up with what he does like instead. This means that he has been very disagreeable with many suggestions often saying or crying or yelling "no." While we appreciate he is not happy with something and lets us know, it is most frustrating not knowing an appropriate solution.

Another thing he has decided to adapt well to, is having tantrums when he doesn't get his way. Since he is not a 2 year old, but an almost 8 year old with these tantrums, this has been somewhat dangerous to each and every one of us and we have all lost our cool at one point or another during these times. I have been scratched and kicked in the head or my hair pulled and the same for Alison and Jason. We have all cried or gotten upset and we have all lost our patience even though we know that he has sensory issues and that getting angry won't help.

We have also been asked difficult questions of our 11 year old such as: "Is it more difficult having a child with special needs?" Or, "Will Daniel ever live on his own?" These always force us to look far into the future and to have to see the dependence that Daniel will most likely need. These force us to see a future that does not appear to look very different from the present. The future looks hard, very hard as it has been in the past with more challenges and physical and mental exhaustion. No one could ever ever imagine in their wildest dreams what it is like to have a child with special needs. The whole life-changing reality of it all.

When HE gives up fighting

I am pretty sure I have stated on here how it is difficult to communicate with Daniel about how he is feeling. He likes to say that his ear hurts or that his teeth hurt, but he is saying it more for the reaction he gets from us (another dramatic person in the family). When he is truly sick, we actually have no idea what is bothering him.

On Friday I got a call from school saying that Daniel fell and hit his chin. There was no question to them that he would need stitches or at the very least need to be seen by the doctor. I went to get him and the funny thing is that his teacher said he did not cry at all. When I got to his school he was eating his lunch and talking and talking and had just a bit of blood dropping from his chin. He was happy! I knew though, that he wouldn't be happy at the doctors office.

I took him immediately to the pediatricians office and once the doctor saw him she said it would have to be either stitches or glue. Since Daniel does not enjoy having band aids or anything on him, they went with glue so that if he pulled at it, he wouldn't be pulling out the stitches. Before they worked on him though, they needed to clean and numb the area. Of course that meant he needed to lay down and be still. Now whenever we have taken him to the hospital (for dehydration) or even the doctors office or the dentist, he is very reluctant to stay still. It doesn't matter how much you tell him that everything will be okay and that it won't be long, he doesn't understand and fights to get off the table. For a little boy, he is very strong and it usually takes a good 3 to 4 adults to hold him still. I am reluctantly one of those adults. It is not easy and Daniel does not help when he kicks and screams, but that part I am okay with. For it is actually when he stops putting up the fight and surrenders like a hunted animal caught in its prey that I feel the most sorrow. After a while he gives up and part of me (even though I know that it would hurt me physically) wants to scream at the top of my lungs: "Don't give up Daniel! Don't you ever give up the fight!"

Life Sentence

Our daughter Alison is the best big sister that Daniel could ever ask for.

She is also a dreamer. Especially when it comes to Daniel. For many years she has dreamed about what Daniel will be like when he gets older. She has pondered who will marry him and wondered about his children. We have taken this in stride and plainly told her that Daniel may never get married or may never have children. This has never caused her to stop dreaming or wondering out loud.

When Jason gave Daniel a bath last night, he commented out loud the question of what are we going to do when Daniel gets too big for the bathtub. He keeps growing--they both do. Alison chimed in that Daniel could just take a shower with her. Daniel still cannot stand on his own and when he gets wet then he is double in difficulty to lift. We told Alison that taking a shower may not happen and she got quiet.

Do you know what it means for Alison to be quiet? We knew she was intently thinking about this. I pulled her over and wanted to gently remind her of what the specialist said just a few months ago...that there is a great possibility that Daniel may never walk. She went to her room. A few minutes later Jason called her back in and we explained (Jason did this well) that we will take care of Daniel until we (Jason and I) can no longer take care of him, and that it may mean putting him in a group home someday. At that Alison flat out told us that Daniel was NEVER going in a group home and that he would live with her no matter what! We told her that was a sweet thing to say, but not to forget that she may be married with her own children one day and that Daniel may be too much for her to handle. We explained that Daniel would not be far from her and that we would all visit him and love him no matter what.

Then she cried, and I saw it...I saw the realization in her eyes of the life sentence that Daniel's disability is. I cried too knowing that she knew what we all knew. She finally understood that Daniel is who he is and will not be the little brother she dreamed of having. I think on some level she always understood that, but she is a dreamer and she continued the dream for as long as she possibly could. Yet last night she woke up and to me, that is the saddest thing I have ever seen.

Running up that hill

I lost it last night.

I didn't get angry or throw things. I didn't scream at anyone, but I silently cried in my husbands arms. It was as we were laying in bed listening to Daniel cry and scream. He has had difficulty sleeping lately and we started melatonin. Jason said something that set me off and I went down that road.

The road where I weep for what could have been. I look to who Daniel would be, had he been born normal. I wonder if Jason and I had never gotten married then Daniel wouldn't have been born.

I love Daniel. I love him so very much and would never want to live without him, but sometimes you see your future with your child with special needs and you see no movement in the future. You see no difference and that crushes your soul.

You overcome and you see what a great kid you do have, but it happens. I can't deny that I have these feelings. I can't believe that others do not from time to time have the same feelings. I think it is only natural. It is difficult to see into a future that is not filled with traditional milestones for both of my kids. You don't plan on being a parent of a special needs child. It is not a choice you make and you don't even get to prepare for it. I wouldn't ask for a different Daniel, though at times it just seems I am running up that hill...

"And if I only could,
Make a deal with God,
And get him to swap our places,
Be running up that road,
Be running up that hill,
With no problems."--Placebo

Reality check-up

Several years ago, Lara sought out and reached out to the authority on brain malformations like Daniel's. In exchange for our token contribution to his research funding, Dr. William Dobyns reviewed Daniel's brain imaging back then and provided us with a diagnosis: cerebellar vermis hypoplasia. At the time, Dobyns was practicing and researching in Chicago. Today, Dobyns is in Seattle, and so are we. And this week, Dobyns and his team met Daniel face-to-face.

The hard facts:

• Daniel will almost certainly never walk independently. At nearly 7 years old, Daniel's trunk will not develop any further. No amount of physical therapy will alter this outlook, but we will continue to work with a physical therapist to get Daniel more comfortable with his walker.
• Daniel will almost certainly not be able to live independently when he is an adult. For example, it is likely that he will never be able to have a job. Through continued physical and occupational therapy, we strive for whatever level of self-sufficiency seems realistic.
• There will come a time when Lara and I are not able to take care of Daniel. A group home will likely be in his future. We are not currently financially prepared for such events but are hopeful that we still have sufficient time to begin appropriate planning.

What's good:

• Daniel social and language skills are still developing, and we are hopeful that continued speech therapy and special education will only bolster this progress.
• Genetic research is growing by leaps and bounds every year. Dobyns now has Daniel's DNA sample, which could be made available for any possible clinical trial that may emerge.
• Lara and I also both provided DNA samples (spit) to determine any genetic causes. This analysis won't help Daniel, but it could be useful for Alison to know down the road.