Son with Complete ACC

[luv2bholm]

Hi,

My son is almost 28 months old. He was diagnosed with Complete ACC the day after his birth. He also has two intercranial arachnoid cysts which were discovered in utero.

We work with our son daily and reinforce his therapies. He is no longer qualified for PT and they are only keeping him in speech therapy becuase of his diagnosis as he is age appropriate.

I really don't know how well he would be doing though if I wasn't reinforcing his therapy and working with him all day every day.

I am concerned that he may have some processing issues. No one seems to share my concern. I have heard that many ACC kids do well in the beginning but then digress later. I want to continue to help develop him as best as I am able.

Does anyone know of specific tools or ways to help kids with ACC? Most doctors here are pleased with his progress and just ignore us telling us we are lucky he is doing so well. His therapist is great in personality, but I don't believe she understands his condition well enough to be a real help to him. I think I am a greater help to him than her and I don't have the training she does.

Here are a few things he is doing that concern me. The speech therapist laid out 6 memory picture cards face up in one are of the room and then laid the match in the other are of the room. He picked a card and was expected to find the match in the other pile. He did eventually do it- took a long time, but instead of wanting to match the cards, he associated them with his toys. So he would pick up a card with keys on it and then go find his toy car. Or he would find a pic with a duck on it and then find his duck puppet. Weird?

He is easily overwhelmed with too many pictures or colors in a book. He has gotten better but does better with one picture or concept at a time.

He is extrememly laid back in his personality. So it's hard to distinguish if he doesn't care about doing or knowing things or if it is just part of his personality.

Any suggestions are welcome and helpful.

Thanks,
Jessica

[hannahsmom]

Jessica,
Other people here can probably give you more and better advice. But here's my two cents worth. Your child is still very young. I'm not surprised that he made up his own rules to the card matching game. He sounds intelligent enough that he could find the matching toy, so I wouldn't worry so much about that. I have found that my child sometimes needs things explained to her several times, in different ways, or maybe with a visual aid.

When she was 3 & 4 she qualified to attend a developmental preschool through our local school district. I think that helped her immensely. If your child does not qualify for such a program, you might want to see if he could get into one as a paying member. My child's preschool allowed "normal" children into the class to serve as examples to the "special" children.

We played classical music for her constantly, too. Music has been shown to help brain development.

My child is about to start second grade. She goes to a private school with very small classes. I think its helpful to have a small class so she gets more attention and is not distracted by so many other students. The only accomodation they have needed to make for her was to not time her tests. She is smart but slow.

I hope some of this is helpful.
Leanne

[jessica]

Thank you, Leanne! You gave me some encouragement. I work with my son at home using a Montessori based program. He seems to respond well to it. I guess I am just a little tense that I may not be meeting his needs enough now to make a difference later. I'll be looking into other avenues for additional help. Thanks,
Jessica

[matthewsmom]

Hi Jessica...(luv2bholm),

Welcome to the message board.

You are not alone in wondering if you're doing enough for your child through therapies. I also went through that when my child was younger and, at times, even now question if I did enough when my son, Matthew, was younger with intervention and therapies.

While it's wonderful that your child is making progress and doing very well I would listen to your gut feelings or your inner mommy voice that tells you when something needs attention or doesn't seem quite right. You will always ALWAYS know your child best and YOU are the one who is around your child 24/7. Being a strong advocate for your child is always in the best interests of your child.

I don't know if you're in the US or if your son is receiving Early Intervention therapy services right now or some other type of therapy such as private clinic speech therapy?

Something I did on a regular basis was to have my son get an overall evaluation/assessment by an outside clinic setting. We used a Children's Developmental and Rehabilitation clinic and in his early years he was evaluated on a yearly basis. He would be seen by a pediatric developmental pediatrician, a physical therapist, occupational therapist, speech therapist and any other medical professionals or therapists that were necessary. This type of testing showed where he was overall developmentally, what he needed to work on and therapies were suggested that would help benefit him. Those medical reports and assessments came in very handy at times when dealing with insurance and therapy services. I also gave copies of those assessments to the school when Matthew began school.

Like hannahsmom (Leanne), I think music is a wonderful and effective tool to use. I take Matthew to music therapy and he LOVES music. I also sing songs to him to help him learn because things click easier for him if it's made into a little song.

For the same reason why there is not yet a guideline for how to teach a child who has ACC there is also not yet specific tools or ways to help kids with ACC. Much of this stems from the very broad range of how ACC may affect a person diagnosed with it. Each person is different in terms of how they are affected and what they will require to help them.

Some kids with ACC do have sensory processing issues. Some kids benefit from therapies that help address those issues. An assessment coupled with your own input and concerns would be something to think about, I think.

When my own son was younger he also did better if pictures on pages were limited to one or two things. It was too much and too overwhelming if the page contained too many choices and pictures. This is something he has struggled with over the years but it did get better. Each child is so different though and will make their own progress on their own timeline.

I don't really find it weird that your son would go and get an object that matched the picture card. I think it's great and very smart of him to do that. I remember when my son was younger and we were working on him learning to use a communication device, I was told by his therapist that objects are easier to learn and that the next step is to move on to pictures. Also, if your son just had the task verbally explained to him without the task being visually shown to him as well as verbally explained to him...I can see where your son may not understand what was being asked of him. I think it's GREAT that he did figure it out.

Like your son, my own son is also very easy going. It took him several years before he made a little shift (even though he is still easy going) and began to assert himself rather than simply moving on to do something else.

One common thing that comes up often with kids who have ACC is social challenges. So many kids who have ACC struggle with how to make a friend, what to say, how to interact with peers their own age and they often times take things VERY LITERALLY. They may not get a joke, or understand certain humor or wordplay. They can greatly benefit from a social group and someone who can guide and mentor them in learning how to play and interact socially with their peers. It has been mentioned many times that as a child with ACC gets older the social gap becomes more apparent in terms of them lagging behind their peers. I think working on social goals from an early age and continuing to work on social goals with a child who has ACC would be a huge benefit for them.

I am a huge supporter of mainstreaming a child in school for the social aspect when a child has ACC. My son only had one integrated Early Intervention pre-school class where there were both typical kids and developmentally delayed kids in the same class. It was an absolutely perfect environment.

When Matthew entered school I made that a top priority...to have him mainstreamed and to provide him with the social aspects of being around typically developing children who could model for him.

Listen to your heart, trust your intuition and give yourself the credit that you deserve because it sounds like you are doing a wonderful job.

Sandie *Mom to 15 year old Matthew with complete ACC*