Mother Calling

I have read on other blogs and in some articles, where mothers of special needs children have a much more difficult job. That for some reason we are stronger than a mother of a "normal" child. I have both and I tend to disagree.

I think that any mother is a mother of a "special needs" child. What child out there doesn't have "special needs?"

In today's world, there is so much that a child needs to survive that any mother who can guide her child though it with very little harm done, is a good mother.

When I was pregnant with Alison, the Iraq war started. I remember thinking that it was going to be very difficult to raise her in this world today. She has so many obstacles to overcome. Daniel does too but in a way, hers are even more dangerous because I cannot predict them. With Daniel, I sorta know what is ahead of me. He has his needs and delays and I know what we need to do to tackle them. For Alison, her needs are not so transparent. Her difficulties lie in the day to day navigation of this world which some days, I can't even navigate. I don't know how to shield her, protect her, guide her through and I haven't yet met one mother who really does.

Special needs or not, it is all a hard part of motherhood. For my children to be successful in life (and I don't mean make a lot of money or be famous), for any child to be successful, they must have a mother who is loving, and caring unconditionally. That is the task of any mother. That is the task of every mother.

Daniel's classroom

Today, Lara and I visited the elementary-school classroom where Daniel will attend summer camp for a few weeks and, in the fall, be enrolled as a preschooler.

While I had anticipated feeling uneasy about the visit, I actually became very excited by what I saw. We sat in on circle time, where the teacher led the class in songs and reading and used lots of visual aids -- really not much different from what we've observed in Alison's preschool classrooms.

What was different, of course, were the kids. Some had mobility issues, some behavioral or communicative. But there was no mistaking that these children were happy, responsive and having a great time. I immediately visualized my boy alongside his classmates, pointing to pictures, talking to the teacher, trying his sign language and "rocking out." (See 'Daniel dances' post.)

While I fully expect him to be apprehensive at first, I know that before long Daniel will be having a great time in his new class. And I am confident that he will excel from being in this new and wonderful environment.

Truth, Reality

I know in my heart of hearts that it is unfair to compare Daniel to other children his age. However, when faced this past weekend with two little boys slightly younger than Daniel-walking, talking perfectly normal little boys, I cannot help but to compare.

I still go back to the why of it all. Why Daniel? I cannot make sense of it, and I don't think that I ever will.

I love Daniel with all my being but the reality is that that love will never change his differences. I wish it could. I wish that someone could just love someone so much that all of that person's difficulties would go away because I can't move mountains, I can't change it and I can't control it either and that is what bothers me the most.

The other day I visited Daniel's soon to be special ed classroom. It was a truly surreal situation for me. Here I saw children that seemed to me to be far worse than Daniel, but in reality, some were very much like him. I fully expected someone official to come walking in to the classroom and tell me that a mistake had been made and that my son actually belonged in the regular classroom, but that was just a wish on my part.

I know full well that Daniel will do great in this class. I know he will love it and that it will be the best thing for him but in truth I still wish it weren't so.

Daniel dances to 'Banana'

The fact that he can't stand up doesn't stop Daniel from grooving to a reggae beat. We came upon this song, "Banana," on our new favorite TV show, Yo Gabba Gabba. I think everyone should watch it, whether or not you have young kids.

My two favorite moments:

• 1:11 -- Danny stops to acknowledge me with a point of the finger, saying "Da-da."
  
• 1:50 -- Daniel does sign language for banana.

By the way, if you're interested in dancing along, here's the "Banana" video.

Lost

I have tried to explain this to Jason without much success and maybe it is something that can never be explained, I don't know.

I have struggled with dealing and thinking of Daniel's condition since before we even knew it had any sort of a name.

I love my son. I love him and his sister more than anything. My life is complete with my family and Daniel is a wonderful little boy. The best, I wouldn't trade him for anything ever!

But there is a feeling I have, a certain sense of loss. It is almost like a person died but someone I never even met. I don't know if this is normal, but it is how I feel. Because of this I am lost.

After learning of his "first" diagnosis, I felt like I was drifting through life temporarily. Like any life-changing event I felt surreal as though I was an observer and not a participator. I don't feel that way anymore, but I still don't feel normal. It is almost like I left that life before and it is never the same. It is not better or worse, just not the same. I am still angry, still sad and still left with many many questions.

Jason and I are different when it comes to this particular point. I need answers. I see things in black and white and always have. He, on the other hand, is able to look beyond and deal with what is and not with abstract of what could be. We compliment each other this way but is one right and the other wrong? How do I move on?

Who the hell knows

I heard back from the great doctor out in Chicago today, and I will post his summary below in a minute. First though I would like to just update this blog (it has been a while) to describe how Daniel is doing.

Daniel still does not crawl or walk however, he is quite mobile. He sort of scoots on his butt to wherever he wants to go. While he still doesn't say many words he does know plenty of signs and is learning more of those every day. He is the same happy wonderfully sweet little boy that he has always been. He is becoming a typical 2 year old in some ways which is good and some not so good (for his mother and father). For instance he will not necessarily listen when you say "no" and he does not like to wait for something when he wants it, he wants it now! He also has a tendency to explore everything :-).

We love him dearly and we are so happy that he is in our life and in our family.

Now, onto the doctors summary:

Lara --

The medical records (and video) of Daniel indicate significant developmental problems, and the video shows poorly coordinated movements and stereotyped postures and movements. His face appears mildly flat with prominent cheeks also. The only head size measurement I found in the records was at the 25% when he was younger; more head size measurements would be useful.

His medical records do mention “mild” lissencephaly as you indicated. On my review, his brain scan shows mildly increased fluid over the front, which makes the convolutions appear a bit unusual. But he probably has a normal number of convolutions, so he does not have any type of lissencephaly. This diagnosis was way off base, and I doubt that any of his current physicians will argue with me about this.

His cerebellum, primarily the middle portion known as the “vermis”, is mildly small. While mild, this is definitely abnormal. It very likely accounts for his poor coordination, and partly accounts for his other unusual positions and movements. The reason he is not talking or chewing is less clear. I designate this as “cerebellar vermis hypoplasia” (CVH). An older but very confusing term is the “Dandy-Walker variant”. While concerning of course, had he had almost any type of (true) lissencephaly, he would have been worse.

CVH is a relatively common developmental problem, and occurs by itself and as part of many different syndromes. It probably has many different genetic causes, and the developmental outcome varies across a wide spectrum very nearly normal to severely handicapped. The video shows significant abnormalities in his verbal and motor skills, so is likely to continue having developmental problems when older. Some causes of CVH come out of the blue (only one in the family) while others can affect siblings. I’m not sure for your family.

He should have a good “chromosome microarray” test done. And genetic testing of the “OPHN1” gene, which can be done in our clinical lab in Chicago. His neurology and genetics docs in VA are welcome to email for other ideas. We could include him in our CVH research studies as well. You might try to email me the video, as it was helpful. I think he should probably see a geneticist in VA as well to work on diagnosis further, and I know good ones in Norfolk, Richmond and the DC area. And please track down his head growth curve.

REVIEW. MRI 5/23/2007 at 9 mo on CD shows normal extraaxial space, borderline mild frontal simplified gyral pattern (reduced number of convolutions) but o/w normal gyral pattern, cortex, hippocampus, basal ganglia, thalamus, white matter, 3rd and lateral ventricles and corpus callosum, persistent cavum septi pellucidi et vergae (minor variant), normal brainstem and cerebellar hemispheres, mild but definite cerebellar vermis hypoplasia involving all lobes, and normal posterior fossa size. wbd

Testing included normal transferrin isoforms fjor CDG and, 15q11 methylation studies.

WBDobyns

Sibling No-Rivalry

Daniel and his big sister Alison seem to have the most love between a brother and sister. There really exists no sibling rivalry. Largely due in part because Daniel is not a real threat to Alison. Given the fact that he still does not crawl or walk and mostly still observes her playing (though that is quickly changing). He hasn't challenged her and taken toys from her. Which is good and which is not so good. She is quick to take toys from him, but he has not yet gotten to the point of noticing that and pitching a fit about that--yet. She also, doesn't get to experience a baby brother.

I took Alison to gymnastics today and we were early. She saw a girl sitting down at one corner and asked if she could sit next to her. The girl was playing a game with her baby brother, who is 2, where he was running between her at one end and their mother at the other end. Alison really liked this and got into hanging around with this girl and her little brother. At one point she was helping him at the water fountain.

Alison asks questions about Daniel's therapy and can draw pictures of him getting therapy but I wonder how much at this age is really understood about her brother. Daniel is her brother, that is what she knows and that is her reality. Deep down though does she realize that it is totally unfair that he is not running around and chasing her like that little boy was doing to his big sister in gymnastics?