Thank you all for sharing in the lives of our three amazing children- Mairead, Jack, and Ben. We hope you visit often!

Tuesday, March 9, 2010

Concerns about Mairead

I hate to follow such a happy and fun post as the boys' birthday with one that is so serious in nature, but I know we have been a little out of touch lately, and I wanted to let you know what is going on with us. We have been increasingly concerned about Mairead's development, and have been trying to figure out what is going on with her. For a long time, we thought that she was doing fine after the stroke, but now, it appears that she is not fine in terms of her development. She is very much delayed, to the point where we had a conversation with her doctor about Autism. You can't even imagine how heartbreaking it is to have that word even mentioned in regards to your kid- it is so, so, scary. Then, the alternative is that she doesn't have autism, just brain damage from the stroke. Not a great choice. We have not said much about it because we wanted to wait until we talked to her doctor and she was evaluated by Early Intervention, but we have had concerns for a while and are now trying to adjust to the special needs that she has, as well as to get services in place for her.

The doctor and EI do not think that Autism is what is going on, but we can't rule anything out at this point because neo-natal stroke is very much under-researched, and every victim shows different results. Most, however, have delays in comprehension, speech, and motor skills, as well as a very high tendency for learning disabilities and other problems. Also, what limited research there is about neo-natal stroke indicates that the deficits are more and more significant as the child approaches school age. The reason that she seemed ‘fine’ for so long is because her brain was doing ‘simpler’ tasks. Now that she should be processing and synthesizing more complex concepts and information, her brain is not keeping up.

Right now, we are on a waiting list to see a pediatric stroke specialist at Children's Hospital. We have had her evaluated by Early Intervention and the results were somewhat disheartening. This is long and involved, but here is what they said--

She does qualify for services and she was so good during the evaluation. She did some things I honestly did not expect her to do, and she was very cooperative. She came out 'lower' in some areas than I wanted to hear, but there was nothing really surprising in what they told me.

Here is how she scored (her actual age is 31 mos)
Cognitive 19 mos (ouch- a full year behind in problem solving)
Fine Motor 25 mos
Gross Motor 26 mos
Receptive Language 19mos (again, ouch. This is what they think she understands)
Expressive Language 22 mos (this is how she expresses herself through language)
Social/Emotional 26 mos (eye contact, playing, smiling appropriately, reacting to others)

The people were really great and told me that she has a lot of strengths. Also, they reminded me that these tests don't truly give a picture of the whole kid. They told me that they could tell that she is smart. Her receptive language and cognitive scores were very low, but it is hard to know what she really understands since she has a hard time communicating to us. There are some times that we think she DOES know the answer to something, but she cannot communicate it to us.

The Speech and Language pathologist is anxious to hear what neurology says because she believes Mairead "sounds like a stroke victim." Lots of ‘carrier phrases' that she uses to compensate. For example, she knows 'help please,' so when she is stuck on something, she just uses 'help please,' not 'fix my toy, please' etc. She echoes certain phrases that she hears and uses them in appropriate situations, where she should be using unique phrases. I guess stroke victims do this as they re-learn language. They get a good grasp on many phrases that help them get what they need, and they use those phrases when they are at a loss for other words.

So, I teared up when she said that because as much as I don't want Mairead to have autism, how horrible and absurd is it that my 2 year old is a stroke victim? How awful that she is starting her life with having to compensate for something so bizarre and something she never had a chance against.

They did see a few of the things that can indicate autism, but her social skills counteract anything ASD related. And, that was not their focus. The speech therapist especially thought the stroke was the underlying factor we need to look at. They said she is 'all over the map,' and that you can't run down a checklist for Autism, Pervasive Developmental Delay (PDD), etc, and see her. Nothing about her is 'black and white.'

I am relieved that the eval is over and happy that she will receive services. She will go to an EI playgroup once a week (the same group she goes to now), and will see a Developmental Specialist, a Speech and Language Pathologist, and a Motor Therapist. These last three services are one-on-one and the therapists will come to our home. I am hopeful that these will help. I am hopeful they do not help too much before her 3rd birthday, because if she reaches 3 and still needs services, she can go to public pre-school and get services there.

I am sad to see it on paper that my little girl is nowhere near where she should be. I hate that it is obvious to me (and to others) that she is smart, but that she has to cope instead of just 'be.' I know that her ability to cope shows intelligence, but I don't want my baby to 'cope' through life. I want her to just live it, like any other kid. I hate that her little brain is damaged and she is already fighting just to be 'normal.' Children with cognitive problems or learning disabilities can cope better if they have natural intelligence, and it seems that is the case with Mairead, so at least she is finding ways to work around some of the problems that she has in communicating.

What's really hard is that we STILL don't have an appt at the stroke clinic. I do understand that there are many kids who need attention and we do want her to see the best doctors that she can, so I can be a little bit patient…but not much. Hopefully we will have more information about that by the end of this week.

Thanks for reading all of this and for your support. I am happy that it is done and that she can finally start getting what she needs. But I am so sad that she is so far from where she needs to be, and that she has to fight an uphill battle against something that never should have happened to a baby, and that has no explanation.

As you can imagine, all of this is very hard on me, on Dave, and on our family. She was doing so well for so long that we were sort of lulled into a false sense of security, and now we are so frustrated and saddened by the seriousness of her situation. We want to be able to make things ‘all better’ for her, but we know there is no magic potion for that. A stroke is a very serious and life threatening event, and we know how lucky we are to even have her with us. We try to focus on the positive, but the uncertainty of the future is very scary, and I am heartbroken that she has so much to overcome. We are lucky to have such great family and friends who are supporting us, and who have been doing that since the day she was born.

I wanted you all to know what is going on with us, and to know when you see her that she is not really functioning like other kids her age. She has some fantastic strengths and has so many ways to show us her intelligence. We think she is amazing and smart and beautiful, and we want everyone in her life to see her that way, too.

Thanks, everyone. Please do check out the previous post to see how much we DO have to celebrate in our lives.


Joseph "Connor" said...

I know Mairead will do very well in EI - she has LOTS of adults around her to help and she's very bright - she'll thrive. :)

Terry Family said...

I'm praying for you all. It's very important and yet extremely difficult to focus on the positive but you have to. You have an amazing little girl and Nathan has a super fantastic cousin to play with. Everything else will work itself out. Not being able to help your child because of something you couldn't control is hell. I'm here.

Caitlin, Al, and Brielle said...

Thank you for sharing that post. It must have been hard to write. I want to share something with you that my mom said to me when Brielle was first born. She had to have an EKG because of her heart murmur and we were freaking out. My mom said, "she's going to be okay, and even if she's not, it is still going to be okay." I don't know if that makes sense in a post, but I think of what she said often. We love our children no matter what and always want what is best for them. While no child is "perfect," they are still "perfect" in our eyes no matter what. I will be thinking of you often and hope that Mairead has a lot of success with EI. It is a great program and there are a lot of services.

John and Michelle said...

John and I would like to let you know that we will be praying for you guys. Your plate is so full right now and I just wanted to let you know that we are thinking of you guys and praying that you will find all of the answers that you need.