Great Expectations (or “How I have no idea what to expect”)

I wish that every Urea Cycle Disorder Family had a blog.  For purely selfish reasons, really.

I know that many disagree and they have valid reasons.  There is a greater chance of misinformation being spread and always the possibility that someone might take information from one child and apply it to their own child, without consulting their own child’s doctor, leading to disastrous consequences.  Doctors are not fond of being questioned either, about how they are treating their patient based on something someone read on the internet, nor are they fond of hearing that “So-and so’s doctor does this…why don’t you?”

I am not necessarily interested in the specific medical details of each child’s case, though it is just human nature to want to know what the child’s highest ammonia was and whether or not they were ever in a coma, but I am interested in the developmental path of each child with a UCD.

The thing is, most people don’t want to put their lives online.  And if they do, they certainly don’t want to talk about the hard stuff.  I know I could email folks and they would probably be more than willing to answer questions but it is the day-to-day living that I am so curious about.

I hate not knowing what I am up against here.

It is pretty clear that Corrigan’s brain took a major hit.  He is more than a year behind, developmentally, and in regards to speech he is even more delayed.  Those of you that have spent the past 2 years poo-poohing my speech concerns with phrases like, “Christopher didn’t utter a single word until he was three and now he is a doctor!” or ” He will speak when he is good and ready…one day you will be wishing he would shut up!” we are here.  Corrigan is three and he hasn’t magically started talking.  He averages a new word every two weeks.  If that.  And my boy? He wants to talk, he is “good and ready” but his brain is frustrating the hell out of him.

When I am a passenger in a car, and we are out at night, I am looking through front windows of homes whose drapes have not yet been closed.  I’m not hoping to catch a glimpse of someone in their underwear but I am looking for a peek inside of a building that I normally only see the facade.  I notice the wood stair cases, or the size of the television, as we zoom by.  I enjoy learning something more from that tiny peek.

I learn more from a two-minute YouTube video than “text only” learning.  When training for a job I just want to get my hands dirty, I don’t get much out of the training manual.  Good thing I didn’t decide I wanted to be a surgeon. I like to see how things work.   I want to see what the day-to-day life is, the real and raw stuff, with a child who is intellectually impaired.

There are few glimpses out there for us in regards to the developmental lives of a child that had a severe neonatal impact from a Urea Cycle Disorder.  I am unable to travel to the National Conferences to meet the families and get to know the kids.  I am fortunate enough to live within driving distance of several UCD families but none had the same coma/four day “ammonia stew” that Corrigan had.  Yes, I know that every child is different.  I know that each brain is unique, as is how that brain reacts and recovers from damage.  I know that comparing high ammonia numbers is not really a good indicator of what the future holds but having no idea of what the future holds is contrary to the way I function.

I’m lost.

Awhile back the phrase “IQ of 60-65” was tossed like a grenade into our laps by his doctor. Corrigan’s therapist were appalled and quickly soothed my fears with calm words and lots of examples of cases that have been given that kind of outcome and overcame and thrived.  Over time though I have realized that therapists are well versed in not giving too much information, keeping their tones upbeat and positive, and never letting the parent get too far ahead of themselves as far as milestones, no matter how modified those milestones are.

When I research IQ’s I learn that 60-65 is considered “mild mental retardation.”  I know a lot of UCD families but none are talking about IQ’s.  None are sharing learning disabilities or whether their child is struggling in school.  No one is talking about IEP’s or behavior issues.  Most look like they are getting along fine on their parent’s Facebook photos. Most appear to be doing well with gross motor skills but are there some fine motor issues?  Are any aggressive to their classmates? Do they have issues with limited attention spans?  Which subjects seem to cause the most frustration in school?

Corrigan looks perfectly normal.  His is an invisible disability.  Right now he is small for his age and with his floppy hair and chubby cheeks looks younger than he is, so the behavioral issues and developmental delays are not as apparent.  When he is screaming his brains out in Walmart because he didn’t want to turn left, or practically hyperventilating because we dared to stop the car, at a stop light,  I am sure witnesses would think he was just going through the terrible-two’s.

From Wikipedia:

In early childhood, mild mental retardation (IQ 50–69, a cognitive ability about half to two-thirds of standard) may not be obvious, and may not be identified until children begin school.[3] Even when poor academic performance is recognized, it may take expert assessment to distinguish mild mental retardation from learning disability or emotional/behavioral disorders. People with mild MR are capable of learning reading and mathematics skills to approximately the level of a typical child aged 9 to 12

So with the right therapies and interventions we could reach the level of a typical 9-12 year old child.  What should I be doing to maximize his interventions so that he can reach that 12 year old level? What are other parents doing with their children.  Not to mention subsequent hyperammonemic events, which we are not naive enough to believe we will never see again with Corrigan,  and how those future illnesses could potentially be a hit to his progress.  Heck, even with stable ammonia his Citrulline is in the multiple thousands, I do not know of anything that is hundreds of times higher than normal that cause no ill effects, do you?

I suppose that wishing all UCD families would blog is selfish.  Each family has a right to privacy, and my voyeuristic needs are not more important than individual families needs, but I am floundering here. I am out of my league with too much time on my hands.  I want to be the very best advocate for Corrigan, I want to go into his first IEP meeting with all of my ducks in a row, not being overbearing or asking for unnecessary things, but with a full knowledge of what my baby needs so that if an intellectual level of age 12 is the BEST we can hope for, then we do everything in our power to get him there.

I am just a baby in this world of “parenting a special needs child” and I have no qualms with saying it out loud.  I need a mentor, someone who has been there and done that.  If anyone knows the direction to point me I will love you forever.

Not that I don’t already.

Seriously, you rock.

I mean it.

3 thoughts on “Great Expectations (or “How I have no idea what to expect”)

  1. Gosh – this post hit me hard. I so can relate to wanting to know what to expect. I have no idea what delays Luca will have. We know she has some physical ones right now, but right now we have no idea whether they are related to brain injury, or because she has spent about 6 out of her 10 months of life in a hospital bed. I am noticing things with her babbling – she is not making the appropriate sounds she should be at this point. But again, can I attribute that to the hospitilizations? I really don’t know. I hope someone can give you some insight (and you can pass it along to me ha). Would your doctors be able to give you any more information about previous cases?

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  2. I am praying that you find the help and peace that you are looking for. This may not be any help at all, but have you asked your therapist that came to your house to help if there are any support groups for parents of children with developemental delays. I would have to guess that maybe the delays may be the same no matter the cause. Just a suggestion. Again, this will be top of my prayer list for you to find what you need so that you can have peace of mind. It must really be hard, in all fairness I will not pretend to even half way understand. I will just offer any support that you could possibly need or want from me. Let me know what or if there is anything I can do.

    Love you bunches, you are soooooo aswesome!

    Rachelle

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  3. Thanks ladies. Rachelle, you are such a special friend, I do not deserve you at ALL. Thank you!

    Kate, well I ask and they kind of blow me off. It is hard to explain how they do it, they are very adept. When she gave us the IQ statement she said, “Based on outcomes of kids that had similar high ammonias/delayed diagnosis this is what we expect.” and every time we talk about delays etc, they always ask me what his most recent therapy evaluation said, they nod their heads and say things like, “That is to be expected considering…”

    I asked about an MRI to take a peek at his brain. They said that once he turned three we would attempt one but that they would have to sedate him and they liked to do that as little as possible. They warned me that they have had MRI’s of brains that looked 100% normal and the kid is obviously mentally impacted but also have seen some weird results (looked like visible damage) and the kid was “typical” in development with no issues. So who knows. In his records I saw that when he had his first MRI, at a week old, they did see some spots. They have never mentioned it to us though, I only read it when I pulled his files out on days I like to make myself miserable.

    We would have to head over to Children’s National for some really intense developmental assessments and the MRI I think they said. I am ready to do it. I think he needs a diagnosis to help get the services he needs. How much of this is just delays and how much is actual damaged brain and once we KNOW then maybe we can then find different avenues to teach him better?

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